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PANS (Paediatric Acute-onset Neuropsychiatric Syndrome)

PANDAS (Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections)

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30 minutes

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This short, video-based online course provides an introduction to Down's Syndrome and dispels some of the most popular myths.

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Pathological Demand Avoidance

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3 minutes

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Foetal Alcohol Syndrome

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At own pace

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Supporting individuals and families affected by dyspraxia/DCD

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15 minutes

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What is Dyslexia? - The Dyslexia Association

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Dyslexia is a learning difficulty that primarily affects the skills involved in accurate and fluent word reading and spelling. Characteristic features of dyslexia are difficulties in phonological awareness, verbal memory and verbal processing speed. Dyslexia occurs across the range of intellectual abilities. It is best thought of as a continuum, not a distinct category, and there are no clear cut-off points. Co-occurring difficulties may be seen in aspects of language, motor coordination, mental calculation, concentration and personal organisation, but these are not, by themselves, markers of dyslexia. A good indication of the severity and persistence of dyslexic difficulties can be gained by examining how the individual responds or has responded to well-founded intervention.

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At a glance

Dysgraphia refers to a challenge with writing.

It impacts skills like handwriting, typing, and spelling.

There are many ways people with dysgraphia can improve their writing skills.

Dysgraphia is a term that refers to trouble with writing. Many experts view dysgraphia as challenges with a set of skills known as transcription. These skills - handwriting, typing, and spelling - allow us to produce writing.

Trouble expressing your thoughts in writing isn't formally recognized as part of dysgraphia. That's a learning disability known as written expression disorder. But when people struggle with transcription, it can get in the way of thinking about ideas and how to convey them.

For example, people with dysgraphia may write more slowly than others. That can affect how well they express themselves in writing. Plus, they tend to have trouble with spelling because it's hard for them to form letters when they write.

Dysgraphia isn't a matter of intelligence. The challenges are often caused by trouble with motor skills. Those skills can improve with help. And people with dysgraphia may also be eligible to use accommodations at work or at school.

About the author

About the author

The Understood Team is made up of passionate writers and editors. Many of them have kids who learn and think differently.

Reviewed by

Reviewed by

Charles A. MacArthur, PhD is a professor emeritus of special education. He researches writing instruction, self-regulated strategies, and assistive technology.

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Dysgraphia is a writing challenge that affects skills like handwriting, typing, and spelling. It's not technically a learning disability, but it can affect learning.

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*Developmental Language Disorder

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*Also known as Global Developmental Delay

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Own pace

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On this page, you'll find information on a wide range of issues that are important to blind and partially sighted young people.

School life and planning ahead

Our school life and planning ahead section covers choosing subjects, exams and study skills, after-school clubs and activities as well as how to start planning for life after school and moving on to college or work.

Starting college

If you are thinking about going to college then have a look at our starting college section. Find information on choosing the right college for you, what support is available at college and funding advice. You will also find useful study tips and hear about other student's experiences of starting college.

Starting university

There are lots to think about before going to university. You need to find the right course, get clear on application processes and it's handy to know where you can get financial help. Read on and you will discover lots of practical support for anything from choosing the right university and funding advice to how to make the most of student life!

Starting work

Starting work may seem daunting, but this section will help you to identify the people who can advise you about career choices, help with interview preparation, give guidance about work experience and volunteering and advise about the support mechanisms available, such as the Access to Work scheme.

Transition guides

We've created handy guides for blind and partially sighted young people who are about to move into higher education and work.

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If you're affected by sight loss, we're here for you

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A general section on Speech, Language & Communication needs

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Sensory Processing Difficulties

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Tourettes Action is a support and research charity working to improve the lives of people living with Tourette Syndrome. Our services include online live-chat and email support, a befriender network, information, webinars, events and resources.

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General section about Social, Emotional & Mental Health needs

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Own pace

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Information for professionals | National Deaf Children’s Society

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Find out more about our free resources for professionals who support deaf children and young people.

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*Autism Spectrum Conditions

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*Attention Deficit Hyperactivity Disorder

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*Adverse Childhood Experiences

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Tips for Managing Oppositional Defiant Disorder | Animated Video from Brain Balance

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30 seconds

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Tips for Managing Oppositional Defiant Disorder | Animated Video from Brain Balance

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6 minutes

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There are 3 videos here. Each is approximately 1hr 10mins.

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Our films offer practical guidance to support effective early intervention and education for children with Down syndrome.

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30 minutes

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We are registered as a charity in England and Wales (269425) and in Scotland (SC039427). The National Autistic Society is also a company limited by guarantee, registered at Companies House (01205298). VAT registration number: 653370050. © The National Autistic Society 2023

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50 minutes

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Life More Extraordinary with Lucy Parsons

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Podcast: Play in new window | Download

Subscribe: Google Podcasts | RSS

How to help a child with dyscalculia

Many people feel defined as 'not-a-Maths-person', but for Dyscalculics it is more than that - they cannot distinguish the number quantity from the number symbol. Without the right support and learning, numbers are mere "squiggles". On today's show, I interview Dyscaculia expert Judy Hornigold to uncover what this learning difference is, and how it affects an estimated 3 - 6% of the population. We learn how to best support your child, and what effective tools and techniques help Dyscalculics thrive as independent individuals.

About Judy

Judy is an independent educational consultant specialising in dyscalculia and dyslexia and has been a Singapore Maths trainer, for UK based Maths No Problem since 2014. She has developed the PGCert in Dyscalculia and Maths Learning Difficulties for Edge Hill University and an accredited dyscalculia course for the British Dyslexia Association. She's also a lecturer and author of several books.

What we explore on the show

What dyscalculia is

What kinds of tasks children find difficult when they have dyscalculia The signs that your child might have dyscalculia How dyscalculia is diagnosed How to help a child with dyscalculia - strategies to help children overcome their difficulties How to communicate with schools and teachers about what helps your child to learn The relation between dyslexia and dyscalculia

Connect with Judy

Resources
Singapore Bar Modelling Times Fables - by Jessie Wilson British Dyslexia Association
Useful links
How to leave a podcast review for The School Success Formula
My book, The Ten Step Guide to Acing Every Exam You Ever Take .
Ten Steps to Exam Success download. Supportive Parents, Successful Students facebook group
Contact Lucy by email: lucy@lifemoreextraordinary.com

(Visited 2,609 times, 37 visits today)

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[57] How to help a child with Dyscalculia with Judy Hornigold - Life More Extraordinary with Lucy Parsons

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Children with dyscalculia find it hard to understand basic number concepts. In this podcast episode we learn how to help a child with dyscalculia.

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At your own pace

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The National FASD website is a vital resource for information and support related to Fetal Alcohol Spectrum Disorder, offering guidance and support.

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35 minutes

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Association for Child and Adolescent Mental Health

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Developmental Coordination Disorder - Professor Amanda Kirby

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See dyslexia differently (a short animation)

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See dyslexia differently (a short animation)

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20 minutes.

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Life with a Visual Impairment: Theo's Story | BBC Teach

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60 minutes

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Speech and Language UK: Changing young lives

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Difficulties with speech sounds can include:

Muscles used to create different sounds. This can be due to muscle weakness and may be linked to conditions such as cerebral palsy.

Sending messages from the brain to make different speech sounds. This may sometimes be described as 'dyspraxia'.

Learning and using different sounds to make words. This can be called 'phonological difficulties'.

Phonological difficulties

Some children have difficulty in learning and using sounds in the right places for words.

Usually, most children will be using a full range of speech sounds by the time they are 5 years-old. Some children, however, will have difficulty in developing these skills. Primary-aged children may be experiencing difficulties if they:

Only use a small number of sounds.

Are swapping one sound for another e.g saying 'tat' instead of 'cat'.

Are missing the ends off words.

Have difficulty with vowel sounds e.g. saying 'poor' instead of 'pear' or 'pot' instead of 'pat'.

Have difficulty with long or complicated words like 'banana' or 'aeroplane'.

Good sound skills are needed when learning to talk. They are also important for developing reading and spelling.

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Difficulties with speech sounds can include: Muscles used to create different sounds. This can be due to muscle weakness and may be linked to conditions such as cerebral palsy. Sending messages from the brain to make different speech sounds. This may sometimes be described as 'dyspraxia'. Learning and using different sounds to make words.

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Understanding sensory processing issues 

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Understanding sensory processing issues 

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60 minutes

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Sensory processing issues are difficulties with organizing and responding to information that comes in through the senses. Kids may be oversensitive to sensory input, undersensitive, or both.

What are sensory processing issues? The term refers to trouble managing information that comes in through the senses. These issues, sometimes called sensory processing disorder or sensory integration disorder, can have a big impact on learning and on everyday life.

This guide can answer basic questions about sensory processing issues. You'll also find expert advice, strategies to use at home, and information on the best supports for your child at school.

Snapshot: What sensory processing issues are

In some people, the brain has trouble organizing and responding to information from the senses. Certain sounds, sights, smells, textures, and tastes can create a feeling of "sensory overload." Bright or flickering lights, loud noises, certain textures of food, and scratchy clothing are just some of the triggers that can make kids feel overwhelmed and upset.

There are two types of sensory processing challenges, and many kids experience a mix of the two. One is oversensitivity (hypersensitivity). This leads to sensory avoiding - kids avoid sensory input because it's too overwhelming. The other is undersensitivity (hyposensitivity). This causes kids to be sensory seeking - they look for more sensory stimulation.

Often, kids with sensory processing issues are oversensitive. They try to avoid sensations they find intolerable.

But some kids seek more sensory input, not less. They may want to touch things and feel physical contact and pressure. They may also be undersensitive to pain and have an unusually high tolerance for it. That's why they may prefer playing rough and not understand if they're hurting someone.

Some kids may be both sensory avoiding and sensory seeking. They may be oversensitive to some sensations, and undersensitive to others. A child's reactions can also change from one day to the next, or even throughout the day, depending on the environment or situation.

Sensory processing issues aren't a specific learning disability. But they can still have a large impact on learning.

Sensory processing issues signs and symptoms

What you or your child's teacher might see depends on two things. The first is the trigger - the sensory input that's overwhelming your child. The second is the type of sensory processing challenge your child has.

Kids who are sensory avoiding may react to a wide range of triggers. These can include loud sounds, uncomfortable clothing, crowded spaces, or certain food smells or textures, among others. Whatever the trigger, the reaction can sometimes be extreme.

Here are some other signs you might see in your child:

Is easily overwhelmed by people and places

Seeks out quiet spots in noisy, crowded environments

Is easily startled by sudden noises

Is bothered by bright light

Refuses to wear itchy or otherwise uncomfortable clothing

Avoids touching people or hugging them

Has a strong reaction to the texture or smell of certain foods

Refuses to try new foods and has a very limited diet of preferred foods

Gets upset about small changes in routine or environment and avoids trying new things

Kids who are undersensitive to sensory input have the opposite situation. They often have a need for movement. And they may seek out input like spicy or sour tastes and physical contact and pressure.

Here are some other signs you might see in your child at different ages:

Constantly touches objects

Plays roughly and takes physical risks

Has a high tolerance for pain

Often squirms and fidgets

Is constantly on the move

Invades other people's personal space

Often gets distracted or feels anxious

Is clumsy and uncoordinated

Keep in mind that kids aren't always one or the other. Some kids may be sensory seeking in certain situations and sensory avoiding in others, depending on how that child is coping or self-regulating at the time. That's why it's so important to observe your child's reactions and to try to anticipate what triggers them.

What can co-occur with sensory processing issues

Sensory processing issues aren't a diagnosis on their own. But they often co-occur with two conditions: ADHD and autism. Kids don't have to have ADHD or autism to have sensory processing issues, however.

Some of the signs of ADHD may look similar to the signs of sensory processing issues. Kids with either of these conditions might need to be in constant motion, for instance. But the reasons would be different.

Possible causes of sensory processing issues

Researchers are looking into biological reasons for these issues. Some research suggests they can be genetic. Researchers are also looking into birth complications and other environmental factors. But so far, there's no known cause of sensory processing issues.

ADHD and autism often co-occur with sensory issues. They don't cause them, however.

How sensory processing issues are diagnosed

Sensory processing issues aren't a formal diagnosis, although they used to be diagnosed as "sensory processing disorder." You might hear a professional evaluator say something like, "Your child has trouble processing sensory information."

There are a few tests professionals can use to identify sensory processing issues. These include Sensory Integration and Praxis Tests (SIPT) and the Sensory Processing Measure (SPM) checklist.

Occupational therapists (OTs) are often qualified to identify and create treatment plans for sensory challenges in kids. Other professionals may be able to identify sensory processing issues, too. These include:

How professionals can help with sensory processing issues

There are no medications for sensory processing issues. But there are professionals who can help your child learn strategies to cope with sensory challenges.

OTs often work with kids with sensory issues. They help kids find ways to be less overwhelmed by sensory input. You may have heard of a treatment known as sensory integration therapy. But more often therapists might create what's called a sensory diet.

This is a tailored plan of physical activities. It helps kids learn to calm themselves and regulate their behavior and emotions. And that makes them more open to learning and socializing.

Here are some things that might be included in a sensory diet:

Jumping jacks

Rolling on a therapy ball

Push-ups

Hopping up and down

Climbing ladders and going down slides

At school, your child might be able to get accommodations through a 504 plan. (If your child has an IEP for another issue, it could include accommodations for sensory issues, too.) The teacher may also give your child informal supports.

Classroom accommodations to help kids with sensory processing issues might include:

Allowing your child to use a fidget

Providing a quiet space or earplugs for noise sensitivity

Telling your child ahead of time about a change in routine

Seating your child away from doors, windows or buzzing lights

Allowing your child to take exercise breaks to self-regulate

How you can help your child with sensory processing issues

It's important to find support for you, too:

Key takeaways

Kids with sensory processing issues can be oversensitive, undersensitive, or both.

Occupational therapists can help kids learn to manage their sensory challenges.

Understanding your child's reactions and triggers is key to helping your child cope.

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What is sensory processing disorder, and how does it affect kids? Use this comprehensive guide to understand sensory processing disorder in children.

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5 minutes

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Executive Skill Building in Teens with Tourette Syndrome

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Hello and welcome to my resource blog for all things related to positive child mental health, SEND and staff wellbeing.

These areas have always been of interest to me throughout my 23 years in education and has been at the heart of the various roles and further postgraduate learning I have undertaken in that time. I have noticed over my time in education a marked increase in mental health issues in children and colleagues in various institutions. As professionals, we are never short of work supporting children and families in this area.

I am also the editor of Teacher toolkit ( https://www.teachertoolkit.co.uk/author/l-how/) and I have behind me a wealth of experience writing academically for qualifications. Currently I hold NPQH, MA Education with SEND and Mental Health focus, NASENCO award, FCCT and Elklan Speech and Language award. I have also undertaken training in Trauma in Education and accreditation and coaching qualification.

Through my SENCO work, I have been training new SENCOs with SEND Station as well as developing my own SENCO training programs. I am a practicing SENCO for one day a week as well.

Looking forward, I am now really keen to diversify my writing further, continuing to add to my already popular blog, as well as building my consultancy work in supporting schools and teachers. As a mum of two primary school children, I can appreciate first hand the pressure children, educators and parents are under!

If you want to know a bit more about what I'm about, this article was written about me:
https://inspodaily.co.uk/2021/04/23/mental-health-blog-advice-positive-young-minds/
Any feedback and comments on posts are gratefully received and I am also happy to take requests of area you are struggling with so just ping me a message or look on my consultancy page to see what's on offer.

Thanks for reading,

Lynn How

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Hello and welcome to my resource blog for all things related to positive child mental health, SEND and staff wellbeing. These areas have always been of interest to me throughout my 23 years in education

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5 minutes

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Supporting deaf children in special schools

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3 minutes.

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What Is ADHD? Meaning, Symptoms & Tests.

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What Is ADHD? Meaning, Symptoms & Tests.

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20 minutes.

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What Is ADHD? Symptoms & Meaning

ADHD stands for attention deficit hyperactivity disorder, a complex brain disorder that impacts approximately 11% of children and almost 5% of adults in the U.S. ADHD is a developmental impairment of the brain's executive functions. People with ADHD have trouble with impulse-control, focusing, and organization.

Neuroscience, brain imaging, and clinical research tell us a few important things: ADHD is not a behavior disorder. ADHD is not a mental illness. ADHD is not a specific learning disability. ADHD is, instead, a developmental impairment of the brain's self-management system. Both adults and children can be diagnosed with ADHD.

ADHD Symptoms

What are the signs of being ADHD? Common ADHD symptoms include:

ADHD symptoms vary by individual. You or your child may experience all or just some of the above symptoms, along with others detailed in the DSM-V.
[ADHD Directory: Find an ADHD Specialist or Clinic Near You]
Many patients and clinicians describe ADHD as an iceberg, where most symptoms lay hiding under the surface - out of sight but ever present. If you think you or a loved one might have ADHD, take one of our free, anonymous tests below to see if you should seek a formal diagnosis.

What Are the 3 Types of ADHD?

The Diagnostic and Statistical Manual of Mental Disorders (DSM) previously identified three types of ADHD:

Primarily hyperactive-impulsive type

Primarily inattentive type (formerly called ADD)

Primarily combined type

Primarily Hyperactive-Impulsive ADHD

People with primarily hyperactive-impulsive ADHD act "as if driven by a motor" with little impulse control - moving, squirming, and talking at even the most inappropriate times. They are impulsive, impatient, and interrupt others.

Primarily Inattentive ADHD (Formerly ADD)

People with the inattentive subtype of ADHD have difficulty focusing, finishing tasks, and following instructions. They are easily distracted and forgetful. They may be daydreamers who lose track of homework, cell phones, and conversations with regularity.

Experts believe that many children with the inattentive subtype of ADHD may go undiagnosed because they do not tend to disrupt the learning environment.
[Free Download: An In-Depth Guide to Inattentive ADHD]
Primarily Combined Type ADHD

Individuals with combined-type ADHD display a mixture of all the symptoms outlined above. A physician will diagnose patients with this Combined Type ADHD, of they meet the guidelines for Primarily Inattentive ADHD and Primarily Hyperactive-Impulsive ADHD. That is, they must exhibit 6 of the 9 symptoms identified for each sub-type.

How Do Physicians Diagnose the Type of ADHD?

These subtypes are now considered "presentations" in the most recent version of the DSM, the DSM-V. Researchers determined that people often move from one subtype to another. For example, a child may present as primarily hyperactive-impulsive in preschool, and lose much of the hyperarousal in adolescence to fit the primarily inattentive presentation. In college and adulthood, the same individual may transition to combined presentation.

The subtypes were primarily based on overt behavioral symptoms, and ignored less visible symptoms like emotional dysregulation, cognitive patterns, and sleep difficulties. Behavioral symptoms imperfectly capture the defining features of ADHD. Non-behavioral characteristics are increasingly recognized in research and diagnosis.

What Are the Symptoms of Each ADHD Subtype?

The symptoms of ADHD are spelled out in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-V), which lists nine symptoms that suggest ADHD-Primarily Inattentive and nine that suggest ADHD-Primarily Hyperactive/Impulsive. A child may be diagnosed with ADHD only if he or she exhibits at least six of nine symptoms from one of the lists below, and if the symptoms have been noticeable for at least six months in two or more settings - for example, at home and at school. What's more, the symptoms must interfere with the child's functioning or development, and at least some of the symptoms must have been apparent before age 12. Older teens and adults may need to consistently demonstrate just five of these symptoms in multiple settings.
What Are the 9 Symptoms of ADHD - Primarily Inattentive Type?

Often fails to give close attention to details or makes careless mistakes in schoolwork, at work, or during other activities (e.g., overlooks or misses details, work is inaccurate).

Often has difficulty sustaining attention in tasks or play activities (e.g., has difficulty remaining focused during lectures, conversations, or lengthy reading).

Often does not seem to listen when spoken to directly (e.g., mind seems elsewhere, even in the absence of any obvious distraction).

Often does not follow through on instructions and fails to finish schoolwork, chores, or duties in the workplace (e.g., starts tasks but quickly loses focus and is easily sidetracked).

Often has difficulty organizing tasks and activities (e.g., difficulty managing sequential tasks; difficulty keeping materials and belongings in order; messy, disorganized work; has poor time management; fails to meet deadlines).

Often avoids, dislikes, or is reluctant to engage in tasks that require sustained mental effort (e.g., schoolwork or homework; for older adolescents and adults, preparing reports, completing forms, reviewing lengthy papers).

Often loses things necessary for tasks or activities (e.g., school materials, pencils, books, tools, wallets, keys, paperwork, eyeglasses, mobile telephones).

Is often easily distracted by extraneous stimuli (for older adolescents and adults, may include unrelated thoughts).

Is often forgetful in daily activities (e.g., doing chores, running errands; for older adolescents and adults, returning calls, paying bills, keeping appointments)

Take the Self-Test: Symptoms of Inattentive ADHD in Children

Take the Self-Test: Symptoms of Inattentive ADHD in Adults

What Are the 9 Symptoms of ADHD - Primarily Hyperactive-Impulsive Type?

Often fidgets with or taps hands or feet or squirms in seat.

Often leaves seat in situations when remaining seated is expected (e.g., leaves his or her place in the classroom, in the office or other workplace, or in other situations that require remaining in place).

Often runs about or climbs in situations where it is inappropriate. (Note: In adolescents or adults, may be limited to feeling restless.)

Often unable to play or engage in leisure activities quietly.

Is often "on the go," acting as if "driven by a motor" (e.g., is unable to be or uncomfortable being still for extended time, as in restaurants, meetings; may be experienced by others as being restless or difficult to keep up with).

Often talks excessively.

Often blurts out an answer before a question has been completed (e.g., completes people's sentences; cannot wait for turn in conversation).

Often has difficulty waiting his or her turn (e.g., while waiting in line).

Often interrupts or intrudes on others (e.g., butts into conversations, games, or activities; may start using other people's things without asking or receiving permission; for adolescents and adults, may intrude into or take over what others are doing)."

Take the Self-Test: Symptoms of Hyperactive & Impulsive ADHD in Children

Take the Self-Test: Symptoms of Hyperactive & Impulsive ADHD in Adults

What Causes ADHD?

The causes of ADHD remain somewhat unclear. Research suggests that genetics and heredity play a large part in determining who gets ADHD. However, scientists are still investigating whether certain genes, especially ones linked to the neurotransmitter dopamine, play a defined role in developing ADHD.

Additional research suggests that exposure to certain chemicals may increase a child's risk of having ADHD.

ADHD is not caused by bad parenting, too much sugar, or too many video games. ADHD is a brain-based, biological disorder. Brain imaging studies and other research show many physiological differences in the brains of individuals with ADHD.

How is ADHD Diagnosed?

There is no single test for ADHD. To make a diagnosis, your doctor will assess for any ADHD symptoms exhibited by you or your child in the past six months. They will also do a physical exam and review your medical history to rule out any other medical or psychiatric conditions that could be causing symptoms.

Your doctor or specialists will perform an assessment using the Diagnostic and Statistical Manual of Mental Disorders (DSM-V), which details the symptoms listed above.

ADHD Diagnosis in Children

A child may be diagnosed with ADHD only if he or she exhibits at least six of nine symptoms outlined in DSM-V, and if the symptoms have been noticeable for at least six months in two or more settings - for example, at home and at school. What's more, the symptoms must interfere with the child's functioning or development, and at least some of the symptoms must have been apparent before age 12. Most children with ADHD receive a diagnosis in elementary school.

When diagnosing a child, your doctor or specialist may also review school records and questionnaires completed by your child's teacher and/or caretakers. They will likely talk with and observe your child, as well as conduct screening for learning disabilities. They will also rule out other conditions that share similar symptoms to ADHD.

ADHD Diagnosis in Adults

Older teens and adults may need to consistently demonstrate just five of these symptoms in multiple settings. For an adolescent or adult to receive a diagnosis of ADHD, the symptoms need to have been present before the age of 12. Symptoms must also not be better explained by another disorder.

ADHD in Children

According to the Centers for Disease Control and Prevention, 1 in 10 children between the age of 5 and 17 receive an ADHD diagnosis, making ADHD one of the most common childhood neurodevelopmental disorders in the U.S.

The symptoms of ADHD are often identified at school, as many children with ADHD have difficulty succeeding in a classroom setting. While teachers cannot diagnose ADHD, they are often the first to suspect ADHD in children as the symptoms typically affect school performance or disrupt the rest of the class.

Many symptoms of ADHD can be typical childhood behaviors, so it can be difficult to know if a child is displaying ADHD symptoms. Children with primarily hyperactive-impulsive ADHD may initially be seen as disruptive or misbehaving, as they are often hyper, impulsive, and impatient, and may interrupt at inappropriate times.

Boys are more than twice as likely as girls to receive an ADHD diagnosis, in part because ADHD is still wrongly considered a male disorder and because boys are more likely than girls to exhibit outward signs of hyperactivity.

Adult ADHD

ADHD is diagnosed in roughy 4.4% of the adult population in the U.S., although this figure is thought to be underreported, as up to 85% of children with ADHD are at risk for having the disorder as adults, and only 10.9% of adults with ADHD receive treatment.

Untreated ADHD in adults can negatively impact many aspects of life, including work, relationships, and mental health. Symptoms such as trouble managing time, impatience, disorganization, forgetfulness, and mood swings can all cause problems for an individual not actively taking steps to manage their ADHD.

Adult ADHD seldom exists alone. Roughly 60% to 70% of adults with ADHD have a comorbid disorder , such as anxiety, mood disorder, or substance abuse. If you suspect you may have adult ADHD, consult with your doctor or mental health professional about diagnosis and treatment so you can improve your well-being and quality of life.

ADHD Treatment

The best treatment strategies for ADHD are multimodal ones - combinations of several different, complementary approaches that work together to reduce symptoms. For one person, this ideal combination may include ADHD medication, nutrition, exercise, and behavioral therapy. For another, it may mean taking ADHD supplements and vitamins, practicing mindfulness, and spending lots of time outdoors in nature. More and more, pediatric and adult patients are pairing stimulant medication with digital therapies like EndeavorRx, which is available by prescription for patients age 8 to 12, or pinpointed apps like EndeavorOTC, a new mobile video game designed to improve focus in adults with ADHD.

Finding the right ADHD treatments - and managing them - takes research, planning, organization, and persistence. Early on, talk with your child's doctor about your options.

ADHD Medication

For children aged 6 and over or adults, medication may be an important part of the treatment plan. Finding the right medication to manage ADHD typically involves some trial and error but can lead to a significant reduction in symptoms.

The two main types of medication used to treat ADHD are stimulants and non-stimulants.

Central nervous system (CNS) stimulants, like Ritalin or Adderall, are the most prescribed ADHD medications. These ADHD medications work by increasing the amounts of the chemicals dopamine and norepinephrine in the brain, which help with focus. There are three categories of stimulant medications:

Short-acting (taken a few times a day)

Intermediate-acting (taken less often)

Long-acting (taken one a day)

If stimulants cause problematic side effects, or simply are not effective, your doctor may suggest trying a non-stimulant medication, like Strattera or Intuniv.

Non-stimulant ADHD medications are considered second-line or third-line treatments because the level of benefits and response rates are significantly lower. Meaning, stimulant medications are more effective at relieving symptoms for a larger percentage of people.

ADHD medications can have many benefits, as well as side effects. The decision to manage ADHD symptoms with medication can be a difficult one. Learn more about the risks and benefits of stimulants and non-stimulants, medication options, how to gauge effectiveness, and more.

What Is the Definition of ADHD?

"Attention deficit" is, some experts assert, a misleading name. "Attention deregulation" might be a more accurate description since most people with ADHD have more than enough attention - they just can't harness it in the right direction at the right time with any consistency. And so individuals with ADHD hyperfocus and lose track of time, or misplace their keys, or blurt out an unrelated thought when their focus breaks free from its chains.

Understanding ADHD: Next Steps

Sources

¹ "Data & Statistics." Centers for Disease Control and Prevention. Ed. Center for Disease Control. Centers for Disease Control and Prevention, 14 Feb. 2017. Web. 14 Mar. 2017.
² Association, American Psychiatric, ed. Diagnostic and Statistical Manual of Mental Disorders: DSM-5. Washington: American Psychiatric, 2014.
³ Association, American Psychiatric, ed. Diagnostic and Statistical Manual of Mental Disorders: DSM-5. Washington: American Psychiatric, 2014.
⁴ Thapar, Anita, and Evangelia Stergiakouli. "An Overview on the Genetics of ADHD." Xin li xue bao. Acta psychologica Sinica (Aug. 2008) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2854824/
⁵ Philip J. Landrigan, Jordan Slutsky. Are Learning Disabilities Linked to Environmental Factors? Learning Disabilities Worldwide. https://www.ldworldwide.org/environmental-toxins
⁶ Dovey, Dana. "Doctors May Soon Be Able To Diagnose ADHD With An MRI Scan." Medical Daily. IBT Media Inc., 30 Apr. 2014. Web. 14 Mar. 2017.
⁷ https://www.(d(.gov/nchs/fastats/adhd.htm
⁸ https://www.(d(.gov/nchs/fastats/adhd.htm
⁹ Kessler, R. C., Adler, L., Barkley, R., Biederman, J., Conners, C. K., Demler, O., Zaslavsky, A. M. (2006). The Prevalence and Correlates of Adult ADHD in the United States: Results from the National Comorbidity Survey Replication. American Journal of Psychiatry. 163, 716-723.
¹⁰ Donzelli, G., et al."The Association between Lead and Attention-Deficit/Hyperactivity Disorder: A Systematic Review." International Journal of Environmental Research and Public Health. January 2019, 16:3. doi: 10.3390/ijerph16030382

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What Is ADHD? Attention Deficit Hyperactivity Disorder in Children and Adults

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ADHD (attention deficit hyperactivity disorder) is a neurological disorder that impacts the parts of the brain that help us plan, focus on, and execute tasks. ADHD symptoms vary by sub-type - inattentive, hyperactive, or combined - and are often more difficult to diagnose in girls and adults.

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At own pace.

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What Is Oppositional Defiant Disorder (ODD)?

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What Is Oppositional Defiant Disorder?

Oppositional defiant disorder (ODD) is a childhood behavior disorder defined by a persistent pattern of hostile, vindictive, and defiant behavior toward authority figures. Children with ODD are frequently irritable, argumentative, and disobedient. ODD may be diagnosed if this behavior lasts 6 months or longer.

ODD impacts between 1 and 16 percent of children and adolescents in the general population, but is far more common among patients with attention deficit hyperactivity disorder ( ADHD). In fact, 4 out of every 10 children with ADHD also show signs of ODD.

ODD may begin in childhood or adolescence and may progress into conduct disorder if left untreated. Treatment for ODD typically involves a combination of psychotherapy and medication.

Worried your child or teenager may have ODD?

Oppositional Defiant Disorder Explained

An oppositional, defiant child will often lose his temper, argue with adults, actively defy requests or rules set by adults, deliberately annoy people, and blame others for misbehavior. He will engage in angry, violent, and disruptive conduct directed at the adults in his life - parents, teacher, physicians, and other authority figures. And he may seem to feel most comfortable in the midst of a conflict, which is upsetting and exhausting for everyone involved - even the child himself. The ODD-diagnosed child is not merely an argumentative or difficult child; he or she is vindictive, rageful and deliberately antagonistic.

The symptoms of ODD may look different for girls and boys, in whom the condition is more common. Boys with ODD tend to be more physically aggressive and have explosions of anger while girls often lie, refuse to cooperate, and otherwise express symptoms in indirect ways. ODD is usually diagnosed in early childhood; some patients outgrow the condition by age eight or nine.
[Free Download: How to Neutralize Your Child's Anger]
Consult with a physician if you recognize the symptoms below in your child, and seek help immediately for violent or self-harming behavior that could be dangerous.

Oppositional Defiant Disorder Symptoms

Physical aggression

Verbal abuse

Explosions of anger

Deliberately annoying others

Vindictive behavior

Frequent arguments

Defiance of rules and laws

All children defy their parents and lash out from time to time. To merit an ODD diagnosis, however, a patient must exhibit a consistent pattern of negative, hostile, and defiant behavior that lasts at least six months.

Types of Oppositional Defiant Disorder

Physicians typically see two types of ODD.

Childhood onset is present from an early age, and can make children very difficult to raise. Early intervention and treatment can effectively address symptoms of ODD and prevent it from progressing into a more serious condition like conduct disorder.
[Download These Kid-Friendly Mindful Meditation Exercises]
Adolescent-onset ODD begins out of the blue in the middle- and high-school years. Once-loving children become impossible to live with. Home and school become places of almost constant conflict.

Can a Child Outgrow Oppositional Defiant Disorder?

Adults can have oppositional defiant disorder, too. The condition may persist for a lifetime just as often as it spontaneously disappears. In about 40 percent of cases, adults with ODD become progressively worse and end up developing antisocial personality disorder.

Even when the condition doesn't worsen, ODD in adults can cause problems in relationships, marriage, and work. Rates of substance abuse, divorce, and employment problems are higher in this population. Therapy and medication are the treatment strategies used most often with adults who have ODD.

Oppositional Defiant Disorder vs. ADHD

Surveys estimate that 5 percent of the general population has ODD, while up to 40 percent of children with ADHD may have the condition. Experts cannot definitely say why ODD and ADHD so commonly overlap.

What Causes Oppositional Defiant Disorder?

The exact cause of ODD is unknown, though many professionals trace it back to a combination of psychological, social, and biological factors. ODD symptoms are often linked to prenatal smoke exposure, toxin exposure, or poor nutrition. ODD is more common in people who have relatives with ODD, ADHD, conduct disorder (CD), mood disorders, or substance abuse problems, though researchers have not pinpointed a specific gene responsible. Traumatic life events, like childhood abuse, can trigger ODD for some people.

Parents and teachers are often the first to identify oppositional behavior in children. Then, the next step is to visit a child psychiatrist or other qualified mental health professional. To diagnose ODD in children accurately, a physician will perform an evaluation to rule out anxiety or mood disorders, which can all cause ODD-like behaviors. These behaviors are only "symptoms" of ODD if they occur more commonly than is normal for individuals of the same age and developmental level, and if they cause clinically significant impairment in social, academic, or occupational functioning.

An evaluating physician may compile a detailed behavior history from parents, teachers, and clinical observation. Talking to as many people as possible about how and where the behavior occurs can help the doctor determine which behaviors are impacting different areas of the child's life. It also helps to determine if the child is responding to a stressful situation, or if you're dealing with an ongoing behavioral issue. The physician may use rating scales and questionnaires to make a complete assessment. Diagnosis is time consuming because multiple sources of information must be assessed.

A person with ODD seldom takes responsibility for her behavior and the effect it has on everyone around them. She sees "the problem" lying with anyone but herself. It usually takes a highly qualified physician to determine whether problems at school, work, or home trace back to ODD.

Before diagnosing oppositional defiant disorder, the clinician must rule out conditions such as a mood disorder, personality disorders (particularly borderline, narcissistic and antisocial personality disorders), trauma (physical or sexual abuse), as well as substance abuse. Each of these can cause oppositional behavior and ODD symptoms.

The strain of dealing with ODD affects the entire family, and may strain marital relationships. Fortunately, effective therapies exist for reigning in even the most defiant child or adult. Changing behaviors is not easy, but it can be done - typically with the help of specialized psychotherapy, a physician to supervise treatment, and occasionally medication.

How Do You Discipline a Child with ODD?

Treatment for ODD includes psychotherapy and medication.

Behavior therapy and family/parent training programs are the treatment of choice for ODD. These programs teach loved ones strategies for dealing with upsetting behavior; suggest positive alternative behaviors to replace defiant ones; and establish guidelines for setting clear expectations, consequences, and rewards for behavior. Treatment is most effective when started early in life.

Oppositional Defiant Disorder Treatments

In those cases where a patient doesn't respond to therapy, medication is sometimes used to "re-wire" ODD behaviors. No medications are FDA-approved for treatment of ODD in the U.S., but clinical experience suggests that most children and adolescents with ODD improve with a low dose of atypical neuroleptics - arippirazole (Abilify) and risperidone (Risperidal), for example. Medication is most effective when paired with therapy programs.

People with mild ODD may report improved symptoms after taking omega-3 fatty acids to regulate mood and emotions, vitamin E to help absorb omega-3s, melatonin to help normalize sleep patterns, or zinc to help neutralize hyperactivity and impulsivity. These alternative therapies are not empirically proven to improve symptoms, however many patients find it helps to devise a holistic treatment plan with their physicians.
[6 Essential, Natural Supplements for ADHD]
Oppositional Defiant Disorder At a Glance

Comorbidity with ADHD
· 25 percent of boys with ADHD and 10 percent of girls with ADHD will develop ODD.
· About 40 percent of those children will get progressively worse and develop Conduct Disorder (CD).

Suggestive Symptoms
· Often loses temper
· Often argues with adults
· Often actively defies or refuses to comply with adults' requests or rules
· Often deliberately annoys people
· Often blames others for his or her mistakes or misbehavior
· Often easily annoyed by others
· Often angry and resentful
· Often spiteful or vindictive
· In adults, feeling mad at the world, losing temper regularly, relentlessly defending self when criticized or blamed; may present as spousal abuse or road rage

Professional to See
A family therapist or counselor. A child or adolescent psychiatrist will need to prescribe any medication.

Treatments & Medications
· Psychotherapy, including training or counseling for parents
· Stimulant medications used for ADHD
· Atypical antipsych0tics, including aripiprazole (Abilify) or risperidone (Risperidal)

Recommended Resources
· AACAP.org
· ConductDisorders.com
· EmpoweringParents.com
·Taking Charge of Anger (#CommissionsEarned), by W. Robert Nay, Ph.D.
·Your Defiant Child (#CommissionsEarned), by Russell A. Barkley, Ph.D.
Your Defiant Teen (#CommissionsEarned), by Russell A. Barkley, Ph.D.
Your Defiant Child: Parenting Easily Frustrated, Chronically Inflexible Children (#CommissionsEarned), by Ross W. Greene, Ph.D.

#CommissionsEarned As an Amazon Associate, ADDitude earns a commission from qualifying purchases made by ADDitude readers on the affiliate links we share. However, all products linked in the ADDitude Store have been independently selected by our editors and/or recommended by our readers. Prices are accurate and items in stock as of time of publication

Oppositional Defiant Disorder: Next Steps

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What Is Oppositional Defiant Disorder (ODD)?

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Oppositional defiant disorder (ODD) is an extreme behavior disorder defined by chronic aggression, frequent outbursts, defiance, and a tendency to irritate others. 40 percent of children with ADHD or ADD also show signs of ODD. Could your child be one of them?

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Welcome to PANS PANDAS UK - PANS PANDAS UK

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Welcome to PANS PANDAS UK - PANS PANDAS UK

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PANS PANDAS UK are a Charity founded in October 2017 to educate and raise awareness of the conditions PANS and PANDAS.

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6 minutes

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What is Pathological Demand Avoidance (PDA)?

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4 minutes

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At your own pace

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FASD Network is an organisation that specialises in providing information, support and training on FASD. It was founded in 2011 in the Durham Tees Valley region which is an area that includes: Durham, Stockton-on-Tees, Middlesbrough, Hartlepool, Darlington and Redcar & Cleveland. Our work has since expanded into the north to include Northumbria, Tyneside and Wearside and also to the south to cover the Yorkshire, Hull and East Riding areas. Whilst we have a UK wide remit to press for change, our particular focus is on the Northern regions and we firmly believe that local services are best delivered by local people and local organisations.
Key Services
We provide support groups for families who are raising children with FASD on a termly basis. We also admin a closed Facebook group called FASD UK which provides daily peer to peer input for families which in turn breaks isolation and offers timely solutions to daily needs. If you are raising a child with FASD in the North East and Yorkshire then please click on this link to register with us so we can add you to the mailing list. ﻿
We provide bespoke training for organisations requiring further knowledge about FASD and how to support individuals and families more effectively. Training is regularly delivered to foster carers, adopters, kinship carers, birth families, social workers, alcohol professionals, midwives, health visitors, early years workers, teachers, police, policy makers, paediatricians and broader health agencies.
Please contact us to discuss your training requirements.

REGISTRATION ﻿

Strategic Development
We work with a range of partners to examine structural service deficits in the UK and advocate for change. Inter-disciplinary networks facilitate the ongoing development of strategic objectives to address this public heath concern and improve outcomes for people affected by FASD.

We conduct our own research and work with multi-agency partners to develop research opportunities which will address knowledge gaps and promote funding of services which are currently absent. If you are interested in research then please get in touch and let us know how we can partner with you.
​

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UK Based Foetal Alcohol Spectrum Disorder Family Support and Training Organisation.

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Challenges faced by children, and practical tips

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Challenges faced by children, and practical tips

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Today's episode is about dyspraxia, a developmental disorder which is most often associated with challenges related to motor coordination but is also often marked by disorganization, clumsiness and poor short-term memory. My guest, Victoria Biggs, knows first-hand what it's like to grow up with dyspraxia. When she was sixteen years old, she actually wrote a book to help teens like her get through adolescence called Caged in Chaos: A Dyspraxic Guide to Breaking Free.

Vicky is a university research fellow and lecturer, a teacher in a school for children with trauma-related mental health problems, a writer, and a story. In addition to having dyspraxia, Vicky is also autistic. In our conversation today, Vicky talks us through her own story of growing up with dyspraxia and shares her personal insights on how parents and teachers can better support dyspraxic children.

About Victoria: My name is Victoria Biggs. I usually go by Vicky. I'm a university research fellow and lecturer, a teacher in a school for children with trauma-related mental health problems, a writer, a storyteller, and the property of a cat named Lottie. I'm also autistic and dyspraxic.

When I was sixteen years old, I wrote a book called Caged in Chaos: A Dyspraxic Guide to Breaking Free, a light-hearted guerrilla guide to adolescence and everything it throws at you. Since it came out I've been a regular guest speaker and trainer on autistic spectrum disorders, dyspraxia, and other specific learning difficulties (SpLD). Whoever you are - a parent of a struggling child, a teacher wondering how to support the SpLD students in your class, or a person with SpLD yourself - I hope you will find something useful and encouraging on my site. Learn more here.
THINGS YOU'LL LEARN FROM THIS EPISODE:

The primary challenges children and teens with dyspraxia face while growing up

Practical tips for supporting teens with dyspraxia

What Victoria believes schools and society can do better to support kids with learning differences

How Victoria's experience with dyspraxia has influenced her as a special education teacher

The most important considerations for parents of newly diagnosed dyspraxic children
RESOURCES MENTIONED:

Victoria Biggs professional / academic website

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TPP 174: Victoria Biggs Shares Her Story of Being Dyspraxic

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Today's episode is about dyspraxia, a developmental disorder which is most often associated with challenges related to motor coordination but is also often marked by disorganization, clumsiness and poor short-term memory. My guest, Victoria Biggs, knows first-hand what it's like to grow up with dyspraxia.

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Understanding dyslexia and literacy difficulties 

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Understanding dyslexia and literacy difficulties 

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How to support children with dysgraphia 

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How to support children with dysgraphia 

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Or click on your preferred podcast player link!

Welcome to the show notes for Episode 31 of the OT Schoolhouse Podcast.

Just when Dyslexia seemed to be the new buzzword in IEP meetings, Dysgraphia and Dyscalculia joined in on the fun. Dysgraphia, especially, has cemented itself into the confines of the Occupational Therapy world. If there is an IEP team using the word Dysgraphia, there is sure to be an OT evaluation to follow.

In this episode of the OT Schoolhouse Podcast, Jayson interviews the author of the Handwriting Brain-Body DisConnect, Cheri Dotterer, MS, OTR/L.

Cheri has been an Occupational Therapist for over 20 years. Much of that time has been serving students who have been referred to her for handwriting concerns. With that said, it was her own children's struggles that really got her into studying Dyslexia, Dysgraphia, and Dyscalculia.

Listen in on this episode to learn how Cheri defines Dysgraphia and explains what the six types of Dysgraphia are. She also shares how we as OTs can help students to overcome some of the problems they face by using the Motor Learning Model and The Sensory Integration Model.

Quick reminder: Links to Amazon.com and other websites on this page may be affiliate links. Affiliate links benefit the OT Schoolhouse at no additional cost to you. I appreciate your support by using these links.

The below references were mentioned throughout Episode 31

Handwriting Brain-Body DisConnect:

Adaptive teaching techniques to unlock a child's dysgraphia for the classroom and at home

By Cheri Dotterer, MS, OTR/L

Be sure to subscribe to the OT Schoolhouse email list & get access to our free downloads of Gray-Space paper and the Occupational Profile for school-based OTs.

Have any questions or comments about the podcast? Email Jayson at Jayson@otschoolhouse.com

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OTS 31: Unpacking Dysgraphia Featuring Cheri Dotterer, MS, OTR/L

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Episode 31 of the OT Schoolhouse Podcast

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25 minutes.

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Developmental Language Disorder (DLD) - What every class teacher needs to know!

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In this episode, we talk about common adjustments teachers make in the classroom to support students who are blind or vision impaired. Students who are blind have complete or near-complete vision loss. Students with vision impairment have decreased ability to see.

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Herefordshire and Worcestershire Health and Care NHS Trust

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What is SLCN?

Speech, language and communication needs (SLCN) is the term given to describe the extensive range of needs related to all aspects of communication - from understanding others to forming sounds, words and sentences to expressing ideas and emotions and using language socially.

It is estimated that 10% of all children have long term or persistent speech, language and communication needs (SLCN) - the most prevalent special educational need identified by primary schools. In Worcestershire this figure is equivalent to 12,000 children and young people aged 0-19 years, with over 6,000 children and young people known to the Speech and Language Therapy Service. Some schools in deprived areas of Worcestershire have identified 50% of all 5 year olds entering school with delayed receptive language skills.

Download the Worcestershire SLCN Pathway Fact Sheets [PDF] using the links below
2.1 What is SLCN [pdf] 2.2 What is the impact of SLCN [pdf] 2.3 SLCN and SEN [pdf]
Useful links

The Communication Trust is a coalition of nearly 50 voluntary and community organisations with expertise in speech, language and communication. The Trust raises awarenesss of SLCN, promotes best practice amongst the children's workforce and provides an extensive range of information about SLCN.

The SEND Gateway is an online portal offering professionals free, easy access to high quality information, resources and training for meeting the needs of children with SEND.

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Herefordshire and Worcestershire Health and Care NHS Trust

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We are delighted to bring you the second podcast in our series that focuses on Tourettes Syndrome. Dr. Seonaid Anderson will be talking to leading players in the field, rising stars of research, clinicians, and experts by experience. She'll be discussing the latest evidence-based research, what's in the pipeline, together with insights for mental health professionals, those working with young people and tips for parents.

'In Conversation Tourettes Syndrome' continues with Lucy Toghill, education manager of Tourettes Action discussing 'Education, and Educating, about Tourettes'.

You can listen to this podcast directly on our website or on the following platforms; SoundCloud, iTunes, Spotify, CastBox, Deezer, Google Podcasts and Radio.com (not available in the EU).

Lucy Toghill

Lucy Toghill is an education manager for Tourettes Action. Lucy works part time and consults with schools and education professionals to optimise understanding of and support for pupils with TS. Lucy worked in mainstream schools as a primary school teacher for 15 years before joining Tourettes Action; and she has a son with TS. Bio taken from Tourettes Action.

Seonaid is a chartered research psychologist and freelance neurodiversity consultant with many years experience in neurodevelopmental disorders. She provides support to research professionals at every stage of the research process and to healthcare experts in their clinical work, for individuals, universities as well as the public sector. She provides specialist advice and guidance on the treatment and management of a range of neurodevelopmental conditions such as autism spectrum disorders (ASD), attention hyperactivity disorder (ADHD), Tourette Syndrome, dyslexia, and mental health. She is on Twitter @Seonaidanderso2 and can be found on LinkedIn.

Transcript

Dr Seonaid Anderson: Hello, welcome to the Conversation series for the Association for Child and Adolescent Mental Health, or ACAMH for short. I'm Doctor Seonaid Anderson, Charted research psychologist and neurodiversity consultant with expertise in Tourettes syndrome. I'm excited to be here today as this is the second in a series of podcasts that ACAMH is hosting on Tourettes syndrome. Over the course of this series, we'll be looking at the latest research based evidence, what's in the pipeline, together with insight from mental health professionals, those working with young people and tips for parents.

I'll be talking to leading players in the field, rising stars of research, clinicians and experts by experience. Today, I'm interviewing Lucy Toghill, who is the education manager at the charity Tourettes action. In her role, Lucy consults with schools and education professionals to optimize understanding of and support for pupils with Tourettes syndrome. Lucy has worked in mainstream schools as a primary school teacher for 15 years before joining Tourettes action, and she has a son with Tourettes Syndrome. Today, we're going to be talking about the role of schools and clinics or health professionals in the lives of young people with Tourettes syndrome or tic disorders. Lucy, welcome.

Lucy Toghill: Thank you for having me today.

Dr Seonaid Anderson: Before we start, I'm just going to give a brief overview of what Tourettes syndrome or TS is. It's a neurological condition that is estimated to affect over 300000 children and adults in the UK, and that's one school child in every hundred. So which is the same prevalence of autism up about one percent. The main symptoms are physical and vocal tics, which typically develop in childhood. And tics can be simple, such as eye blinking and sniffing through complex movements and vocalizations that can, at the extreme end, be incredibly debilitating. For TS to be diagnosed, multiple motor trips and at least one vocal tic must be present for at least 12 months. Another issue that we'll discuss later is tics wax and wane and change in their nature across time. There is more information about TS on ACAMH website with a very useful topic guide. Lucy, I'd like to start by asking, how did you become interested in Tourettes Syndrome?

Lucy Toghill: I worked for a teaching school for many years and and through that developed a special interest for SEN very early on in my career, actually. And then I had my son, who's now 14, and he was diagnosed with Tourettes Syndrome when he was seven. It was a really tough time, not just to get the diagnosis, but especially getting the school to understand and get the right support in place for him. Tourettes Action really helped me and my family and I started volunteering for them at this time. And then the job came up and I went for it and I realised how important the role was actually and how important it could be to so many families. And so the role developed really into what it is now and we can now have so much support to family the schools, which is great.

Dr Seonaid Anderson:
And can you describe some of the work you do as education manager? You describe support. What does that look like?

Lucy Toghill: My main role is really to liaise with schools and parents to help them understand the needs of children with Tourettes Syndrome in school and to provide them with support and advice and teacher training and resources, really just to best support the child in question. Before covid, we do workshops around the UK for teachers to attend. Because of covid, I've sort of had to adapt that training to an online free training resource or online package for teachers that they can easily access. And we also do webinars by schools, teachers and parents to help get the information out there. That does sometimes mean that I am contacted by health professionals like educational psychologists, school nurses, mental health workers, CAMS and clinicians. They're all interested in knowing how best to support the children.

Dr Seonaid Anderson:
It sounds like you try and take the whole school approach, as it were, and try and get all the staff a little bit more knowledgeable about Tourettes Syndrome. It's not just of course teachers that the pupils come into contact with.

Lucy Toghill: Absolutely. I mean, it's really important that this is the case. And it's it's really important that a child is able to attend school. And in order to do that, we need to make sure that the child is fully supported, they're fully understood. They feel fully accepted by the whole school community, not just that class teacher. And, you know, it's important to remember that children are in school more than they are at home. You know, school's jobs to work alongside parents, to nurture these children, to become very balanced individuals as they develop into to adulthood and go off and find work in the real world, in the lives of the real world.

Lucy Toghill: If we had a child in school that had epilepsy, for example, or an allergy, we wouldn't allow that child to go to school unless the whole school had had training on how to deal with that specific condition and manage those situations much like Epipen training. You know, if a child, an allergy to all the teachers, would have to know how to equip themselves in Epipen training. So the same needs to be said for children with Tourettes Syndrome, really, in my eyes.

Dr Seonaid Anderson: Unless teachers fully understand those hidden barriers to learning that child with Tourettes Syndrome may have, then how are they going to be able to even begin to understand how that child learns and how best to teach them? So we really want our children to have full access to the curriculum and be able to reach their full potential like every other child. And the same goes for other children in school.

Dr Seonaid Anderson: Children are very accepting and researchable generally to diversity and differences. And and I see that every day in my job, you know, we get feedback from teachers that say that they've shown the class Tourettes session peer presentation that we provide and what a huge difference it has made to that child in question. We have to be led by each individual child and some children are happy to suppress or control their tics and don't want people knowing all about the condition. And we have to we have to accept that, too.

And you mentioned the peer presentation that Tourettes Action. Could you tell us a little bit more about what that looks like?

Lucy Toghill: Yeah, sure. I mean, it's really a PowerPoint presentation aimed at children, and it's something the child can get involved in. If you've got a child that's very confident and they want to lead a class talk or an assembly, they can absolutely do that. And that's lovely. But if you are a child or parent, the wants the information to be come across to the rest of the school, the class, and they may not want to be involved in that. And that's fine. But, you know, the teacher can then deliver that.

Dr Seonaid Anderson: And so the work that you do is sounds mainly school focused. But it also sounds like you've got lots of information that might be of interest to health care professionals. What's on offer specifically to that group of people?

Lucy Toghill: And we do encourage any health professional to take our training is focused on schools. I think there's a lot they can gain from that or attend one of my webinars and many do. We have lots of health professionals come along that many CAMS or mental health services. I think there is a lot to be done for these professionals in knowing what real life is like. You know, day to day for these children in school. Many of the charities, very closely with that support the co-occurring conditions, would would say exactly the same.

Dr Seonaid Anderson: Yes. And you mentioned the co-occurring conditions. These are commonly things like attention deficit hyperactivity disorder, ADHD, or obsessive compulsive disorder, OCD. And I think we've sort of found in the past that 80 to 85 percent of patients with Tourettes Syndrome also have these co-occurring conditions as well and sometimes can be, perhaps more problematic than the tics themselves. I guess we also used the term health care professionals to sort of meet anyone the young person might come into contact with during their journey through diagnosis and treatment.

So that be GPs, nurses, neurologists, psychiatrists, psychologists and also occupational therapists and pediatricians and any of those working in the CAMS Service, which we've mentioned already. I know that you and I have both spoken with parents who report these challenges of a school for children with Tourettes syndrome.

And you mentioned these hidden barriers to learning. Sometimes that these are quite sort of neglected areas. And it would be nice to talk to you a little bit about some of those. Have you found with teachers, for example, that it can often be difficult to tell what is a tic, which is actually a tic or what's the behavior. They might be quite difficult for them to tease them apart. And what is sort of naughty behavior? What would you say about that?

Lucy Toghill:
Yeah, absolutely, and that's the number one question, actually, that I get asked every time. If I go into a school or speak I to a school, teachers will often ask me, you know, is this a tic or is this neurotypical bad behavior, you know, and and it's often very difficult to unpick that at times. And even parents report and I know from my son in the very early days of diagnosis, I wasn't quite sure what was a tic, what was OCD, what was him being, you know, typically misbehaving. But it's really a question of getting to know that child. We need to spend time with this child at school.

Lucy Toghill: We need to ask the child, you know, I'm very pro pupil voice. I'm very pro teachers using a one page profile to explain to other teachers about their condition. And we want the child to be involved in that as much as we can really. We have had some teachers say that, you know, the child in question, it doesn't sound like a tic because they're being silly and everyone's laughing at them.

But, you know, what I said to teachers is let's consider this, you know, from a child's point of view is actually a little easier to be accepted in class, to be seen to be naughty than it is, to be seen to be ticing and apparently being seen by your friends being weird and different. So I think it's important just to let health professionals know and schools know that, you know, this can happen to children and to be aware of those children that are struggling in that way.

Dr Seonaid Anderson: We know that Tourettes syndrome has no effect on IQ. There's no cognitive deficit as it were. But there are issues with learning, I think a common theme is often that there are some executive functioning difficulties. Certain tics can actually interfere with learning. Is that also your experience?

Lucy Toghill: The symptoms of around Tourettes Syndrome can have a massive impact on the child's ability to learn, for example, hand tics. I mean, that would be quite obvious. If child's not able to write. If a child's got OCD, they might rip up their paper, scribble out their writing. We know that children have visual tics. They might be looking around the room and counting things, you know, and all the other co-occurring conditions that come along with that. And as you Seonaid, you know, it's not the tics themselves sometimes that all these barriers to learning but, you know, with ADHD, you've got the distraction and the lack of concentration and you mentioned executive function skills, Seonaid.

And that's that's really important. And this is something that doesn't affect every child, which was syndrome. But certainly when you talk to teachers and certainly in the work I do. An educational psychologist will probably back this up, really, from my experience. That executive function difficulties is something that we see commonly in children, with Tourettes Syndrome. And, you know, we're talking basically about these three main set of mental skills which are working memory, flexible thinking and self-control.

And these can affect things such as organizational skills, planning and focusing, starting or finishing tasks and moving from one task to another. So for this, we need to be modeling in school these set of skills and scaffolding that for children. And we need to be giving children the time to process their thought and giving time for pause and effect and keeping those expectations clear and consistent all the time.

Dr Seonaid Anderson: So that's the kind of academic side. But there's also this element with some people with Tourettes syndrome. And this is a bit of a myth that having a diagnosis of Tourettes syndrome means that you will have the swearing tic or coprolalia. But actually, research has found that only about 10 percent of people with Tourettes syndrome will have that coprolalia tic. But there can be, it can be challenging and confronting nature of that and also other tics as well, where it's not socially appropriate to say something like a tic will come out and affect on other students and teaching staff as well. Is that you've come across?

Lucy Toghill: I actually see a lot of children with coprolalia because it's actually one of the most difficult things to manage in schools, as you can imagine, with safeguarding. That's both for children and staff. You know, we've had staff that even though they've had the training, they totally understand that this condition is involuntary and there's no malice behind the tic. If you've got a child that is particularly obsessed with one staff member and they're picking out personal things about them, you know, their tics and making them say things about them, they're quite personal.

We need to take care of staff. You know, there may be times the staff are not happy with that all the time. We need to consider that, you know, I advise schools really to have a point of contact in school, in their pastoral team for someone that's trained that both students and staff can go to if they've been upset by someone's tics. And also another thing we ask or we suggest people put in place when schools ask us is that they possibly have a letter that they can send home to parents, obviously, with the permission of the child in question and their parents to help explain Tourettes syndrome and nip any bullying or complaints in the bud as soon as we get whiff of them. Schools, where possible, you know, we need to explain to other parents that the school is very supportive of this child, and they will be intending to make this child feel accepted by the whole community and possibly offer parents at coffee morning or afternoon to come in and talk about Tourettes and pick up some information and ask questions.

You know, we don't want this to be a hidden condition within the school because in the case of coprolalia, it is not going to be hidden at all. You know, it's going to be out there and it's going to be obvious to schools. So I think we need to address it and be open to parents, really.

Dr Seonaid Anderson: I know that from speaking to parents and teachers, other issues that come up for students with Tourettes syndrome, things like disinhibition, we've talked about OCD as well, and lack of control perhaps, and that could be oppositional behaviors to and rage is something that we hear often from parents. This is perhaps more commonly seen at home than in school. And that can be a point of difficulty as well, with behaviors being slightly different between home and school environments. And we know that different environments can set off tics or bring them to the fore. And sensory integration issues as well can be fairly common with young people with Tourettes syndrome as well.

Lucy Toghill: Yeah, definitely. I mean, you know, what I would say to clinicians and schools is that, you know, you've got a child say there's an eight year old child with Tourettes syndrome that's been diagnosed. They don't really understand quite yet how it affects their body, but what they do know is that they've got lots of involuntary movements going on and their body is making them say things they don't want to say and make sounds. So, you know, consider that children think, well, no wonder that child has a lot of rage going on if their body is doing things that they don't want it to do.

And as you said Seonaid, you know, environmental factors are huge in this. We know, you know, even adults have reported to us that a change of environment, a change of smell, heat, touch, hearing if there's a particularly acoustic sounding room, can all be triggers to setting off their tics. So, again, it's very important that we use people voice and we talk to the child about what their triggers may be. And that can be very hard for a child, with Tourettes, you know, a child may not know what their triggers are. We know about this premonitory urge, don't we? We know that, you know, some children and adults get that feeling before a tic comes. And that's something that therapist can work on for CBT.

Just draw on an example, I had before Seonaid, if that's OK, that, you know, I went into a school that thought a boy didn't like maths or he didn't like the maths teacher. And, you know, his tics really kick off in maths and actual fact, when we took this boy into the classroom, the math classroom, you know, without maths, without a teacher, we sent him where he sits.

And when we sort of tried to unpick what it was, it was trigging off his tics in that situation. And it came to that it was the chair he was sitting. And on the chair scratching on his school jumper. Now, I'm not saying this is is as easy as that, but we did we took away the chair and that he was much more settled in that class and less ticy. And as I said, I'm not saying it's easy and that easy in a situation, but do consider, you know, the effect that these environmental factors and sensory issues have on children with Tourettes syndrome because it's very common

Dr Seonaid Anderson: That such an interesting example as well. And we haven't actually talked yet, I think, about children Tourettes syndrome actually trying to suppress and control their tics while learning. That can also, I imagine, absorb a huge amount of energy and concentration from them to try and control their tics while they're in the classroom and also subsequently affect their learning. They may not be able to take everything in or have taken everything in regards to instructions and things like that, I would imagine.

Lucy Toghill: Absolutely Seonaid, yeah. I mean, we know that trying to suppress a tic, and children, you know, we encouraging schools not to suppress, because we know that that can possibly have a knock on effect. And we know that suppressing is very uncomfortable for people. That's what they report. And I'm actually suppressing is very tiring. So you may have a child in class that presents very disengaged and bored and not learning, and that may be dealt with through the behaviour. But actually consider that all the time that you would doing the input, you know, in school, that child may have been ticing. And when you're ticing children tell they can't concentrate because they're concentrating on that tic.

Or, you know, the flipside of that is when you're when you're suppressing, you know, it's not just ticing when you're suppressing your very tired and you're trying to hold that in. And that takes a lot of concentration. So either way, you know, that child is going to have difficulties concentrating. So it's really important that we address that in school and that the teacher acknowledges that so that they can go and help the child after and make sure that they've understood.

Dr Seonaid Anderson: We've been touching on this already, but could you talk a little bit more now about some of the termed reasonable adjustments that schools could be asked to make for a student with Tourettes syndrome.

Lucy Toghill: I mean, we know that schools have to be seen to be making best endeavours at school to meet all children's needs in school. They have a legal obligation to make what we call reasonable adjustments, as you mentioned. Now, most schools will be able to do that within their SEN budget, their current SEN budget. And most children with Tourettes syndrome to be fair, will be able to have access to this and most of their needs will be able to be met.

However, this does depend on the level of needs of the child. It is very rare that we see a child with just Tourettes syndrome in school with pure Tourettes. In fact, as you mentioned before, Seonaid, is just around 80 to 85 percent of children with Tourettes syndrome will have these conditions and the most common being ADHD, OCD and autistic spectrum disorder. So if a child is presenting with other more serious needs from one of these other conditions, then it may be that depending on their level of need, that schools are unable to meet their needs in the given budget that they have available to them.

And in this case, we would look into applying for what we call in EHCP, which is an educational health and care plan, which is a, this is a legal document wriiten by the local authority, which sets out all the support that the child needs and the provisions on how those needs are going to be met in school. Teachers will be responsible, really, for providing most of the evidence for that. But also all the health professionals involved in that child's care will be asked to submit reports and evidence to support that. And that could be educational psychologists, OTs, anyone that's had input in that will be asked to submit a report. Educational Health and Care plan will also set out outcomes that will follow the child through to the age of twenty five, which is brilliant.

And this will of course, indeed, come with funding sometimes, not all the time. But if, depending on the need comes with funding from the local authority to help those outcomes be achieved. As far as reasonable adjustments go, we would expect to see a child receiving school before educational health and care plan needs assessment would vary really. And we would expect that child to be receiving some support from maybe a teaching assistant. That's not to say, you know, certainly not one to one. Just some time with that teaching assistant to oversee the help they need. Work could possibly be differentiated for the child. Interventions could be put in place to promote positive mental health. And we know that a lot of that work is going on this year with the impact of covid. So our children are benefiting from that this year.

Another strategy we may put in place is permission for a child to leave the classroom if they become overwhelmed or feel the need to have a break. And let a few tics out somewhere private. And that's very important actually that's followed through. We don't want the child just walking around the corridor you know we need again using that pupil voice and making sure they understand the use of that tic pass and, and that maybe they want to take their work with them and go meet someone rather than just walking around the school. And train the staff, you know, and that's that's an important thing for them to have.

Dr Seonaid Anderson: For making me think about any challenges from students or their parents. Do you ever face challenges from students, their parents not wanting the school to know about their Tourettes syndrome, you know, maybe a student refusing the support or the accommodations because they don't want to be singled out as different. I can imagine it's probably adolescence or older adolescents that. Have you come across that?

Lucy Toghill: Yeah, I have in both primary and senior schools, actually. And it's as I mentioned in and we have come across families where they wish to not be different from their from other peoples and they wish not to have any special compensations for their disability. And we and we absolutely have to respect that, don't we? You know, we have to do our best to support those children in any way that we can that's acceptable to them.

And we know I mean, we know from studies mentioned that that doesn't always have the best positive outcome. You know, what are we showing that child? If we are teaching them, they've got to hide part of who they are and they're not allowed to be themselves. And we know from studies that this can have a detrimental effect on mental health. But in some cases, actually, you know, this is the right thing for the child and we have to respect that.

Dr Seonaid Anderson: And I would imagine also there probably more many more children with ticsor tic disorders. We know that tics are a common part of childhood and there might be children who may not receive a diagnosis, but they would still have the tics present would benefit from some kind of support as well. I think it's impossible, not to mention covid this year. And you mentioned that just a few moments ago. Is that something that you're building in to your awareness for teachers? Because you and I both. That can often be quite suggestible and so in anxiety provoking situation tics that sort of come out, it might be the sort of worst option at that time to come out.

So therefore, we're hearing a lot of people with Tourettes syndrome saying that they have to go sniffing and coughing tics, especially at the moment under the current situation as well. Is that something that you're seeking to schools about or try to make teachers aware that these are tics that their Tourettes syndrome students might be showing at the moment?

Lucy Toghill: Yeah, we have we have had teachers get in contact about that. And I think, again, it's about getting to know the child, talking to the family. The covid situation has exacerbated a lot of children's anxieties over the last six months. And we know you don't need the anxiety, fuels Tourettes, and it fuels tics and the suggestibility of covid at the moment, children have got if they have vocal takes, it can be quite common at the moment to shout out I've got coronavirus or to exacerbate those symptoms of that as a tic, you know, and I think it's really important that that is addressed with children and families.

And schools have to be really careful. They have to safeguard themselves. You know, if they're unsure if its a tic or not, they probably would ask that child to be tested to make sure because they would need the evidence to school. But I think, again, talking to parents and the child themselves, you know, I haven't found too many issues with it at the moment.

Dr Seonaid Anderson: I'm really interested in the psycho education that you're offering, and just to bring in some research evidence behind those psycho education initiatives and researchers for the National Hospital for Neurology and Neurosurgery, the University College London and Tourettes syndrome clinic at Great Ordman Street Hospital carried out research examining the usefulness of psycho education for Tourettes syndrome. And they looked at whether psycho education in terms of giving other people, such as teachers or classmates, information about the conditions.

Was it an effective intervention for Tourettes syndrome? And the research consisted of two parts. The first was a review of other studies examining the effects of giving information about Tourettes syndrome, or ADHD, to children and adults, including peers and teachers. And the study found that giving factual information can make other people better informed and also lead them to think, feel and behave in more positive ways towards people with Tourettes syndrome, at least in the in the research study. So just telling people the diagnosis the person has without explaining what it is, doesn't seem to have such a positive effect.

And the second research paper was an evaluation of what we've spoken about earlier, the peer presentations that involve children with Tourettes syndrome recruited through Tourettes Action, and they were using the Tourettes Action primary school presentation. So the researchers asked teachers to give a presentation about Tourettes syndrome to the classmates for children Tourettes syndrome.

And the classmates were given questionnaires before and after the presentation and interviewed in groups. The children Tourettes syndrome their parents and teachers who were also interviewed. And the aim of the interviews, focus groups and questionnaires was to find out what impact the presentation had from these different perspectives. The findings suggested that in general, the presentation increased the classmates knowledge Tourettes syndrome gave them more positive attitudes and behaviors towards the child Tourettes syndrome.

It also appeared to help the children themselves with Tourettes syndrome to feel more accepting of their condition. The more confident and less different and the findings suggest that it is useful to educate other people about Tourettes syndrome, and this will help improve the experiences of those living with the condition.

As I said, that presentation stayed updated. That was from 2013. But we don't have a current evaluation of your presentation given in schools. But hopefully the impact of this new and improved presentation would be even greater than the previous one building on it. What about your own experience as a parent receiving diagnosis? Did you feel supported by school and health care services enough?

Lucy Toghill: Well, you know, I feel very strongly about moving forward towards lessening that gap. And as you know Seonaid, in services, especially to support families. And if schools and other services such as CAMS shared all these resources, it would be great and it would be so much we could do to make more of a positive message that's given the point of diagnosis in offering families that lifeline really and making them aware of services that are available to them, not just with medication, but with behavioural therapies and information on charity such as ours so that we, so they can feel so much more empowered and supported and therefore less alone.

And you talk about my own experience, drawing on my son. Our experience, unfortunately, was waiting a long time to see CAMS. We were refused referral at first and then we were able to get one. And it was very much, we saw a psychiatrist who diagnosed us, and it was unfortunately just a case of, yeah, Tourettes syndrome. Off you go. You know, we were left to the point as What does that mean? What is a syndrome? You know, we didn't have a lot of explanation, not a lot of time to talk about that in the appointment.

And I very quickly had to do my research as a parent as to what that meant for us and what that meant for my son in his life. You know, and it's very important to draw upon the effect of a parent and that grieving process that a parent goes through from receiving that shock of a diagnosis. You know, the parent may say, gosh, is anyone going to love my child like I do? Are they going to be able to get a job, hold down a job? Will they be able to get, you know, drive? And the answer to all these questions is absolutely, yes. What is important is this, you know, the support we put in place and making sure that support is there for that child to make sure they can just carry on and thrive so think can get a point of diagnosis, that needs to be more support for the families so that they don't feel alone and they feel that they are supported by both school and the information they receive from the clinician.

Dr Seonaid Anderson: I mean, we've definitely heard the issues from parents of children with the Tourettes syndrome about diagnosis and treatment. Why is it that is so fraught with difficulties and challenges from the very start of parents noticing tics in their child, and taking their child to the GP? It can be described as a bit of a battle for some. And obviously in some areas around the UK, it's working much more smoothly. But it's interesting looking at the differences between the parents, describing this immense challenge and other families where it's much smoother.

I know that we've talked a little bit about diagnosis. Quite often when a child with tics is taken to the GP, there will be a period of about a year sort of watchful waiting to see if the tics come or go or if they're still there after a year that they might get referred. And we do hear about people bouncing around the system from their GP to a pediatrician, maybe to a neurologist, maybe to CAMS and it seems like in some cases, health care professionals could be more educated about what Tourettes syndrome is and what it isn't. We've heard of some health care professionals saying but your child isn't swearing it can't be Tourettes or maybe their sniffing it's to do with an allergy. But what would you say about this huge challenge and difficulty of getting diagnosis and treatment in some areas?

Lucy Toghill: I think really, Seonaid, it is because the diagnosis pathway varies so much in every NHS trust. And this is what we're hearing from parents and no one trust does it the same, which actually makes my job a lot harder for the help that I can give families and advice, because they're pathway to diagnosis is so different. You know, some I hear from my work that some people get referred to CAMS by the GP straight CAMS and if they're lucky enough to to get on the list and not turn down because their needs aren't high enough, then, you know, the long wait to be seen begins. And some GPS referred a straight to neurologists, which again with the long waiting list can be successful. And then there's some GPS have been known to refer to specialist tics clinics if there is one in the area.

But these, as we know, are far and few between. But some GPS will refer to a local child development centres if it's not straight forward and there are other complications. So once successfully getting on the list and finally being seen, the next wait, if you like, begins. If Tourette syndrome is suspected and a child needs to be seen to be having both motor and vocal tics for at least a year to get that diagnosis. So, you know, we need to let parents know that it's best to keep a log with notes and maybe videos dating back to the first time they started to even noticing the tics so that they have a good evidence base that they can draw on by the time they get to be seen. If there are any suspected co-occurring conditions going on, then, you know, the GP or specialist may refer to another specialist for further investigations.

And that's not forgetting all the other tests that may be put in place by specialists that they will do with the support of school, for example, to decide if other conditions such as dyslexia, dyspraxia or ADHD or autism spectrum disorder is present. So you can see how varied the diagnosis pathway to Tourettes can be. You know, and I have known families takee up to three or four years, possibly more, to even get the diagnosis that feels right for them.

Dr Seonaid Anderson: It's interesting you talking about parents perhaps taking videos. That's something we've heard from clinicians as well and parents that the child may not present with tics at the clinic sometimes, which can be a little bit frustrating, so having some video evidence from home and diaries, as you say, could be really helpful in terms of informing the clinician. We touched on earlier that there are behavioral therapy treatment options as well. Sometimes, maybe in the majority of cases, medication can be offered for where tics are viewed as serious enough for some medication.

But there's also behavioral therapy that can be offered as well in some cases. There are the European guidelines on the treatment and management of Tourettes syndrome, which can be very useful for clinicians to have. And they are the actually state that behavioral therapy should be offered as a frontline treatment for tics. But we do know that there is a lack of trained therapists in the UK. Some patients report not having been given any information at the point of diagnosis about behavioral therapy as a potential treatment. And that's something that hopefully you and others can can help change.

And parents have describe this diagnosis moment as a bit of a cliff where they're not given much information, they're not signposted to support associations or given leaflet information for them to digest afterwards. So that would be something that we would hope to improve upon. And patients report one thing, the behavioural therapy, but they're unable to find the help. So hopefully there'll be more training of clinicians in the UK and hopefully using telemedicine, which we're all getting much more used to now, having meetings and perhaps even clinical consultations over the Internet is the way forward to allowing access to many more people, just thinking about what services are available to the clinicians, also to inform the parents about the point of diagnosis.

I'm sure it must be very much more satisfactory also for the clinician to be able to give the information leaflet to the parents and point out that there's a patients association in that country and guide the family towards extra help as well. I've recently been co-creator of an online directory of support of Tourettes syndrome patient associations around the world. And this can be found on ESSTs website of the European Society for the Study of Tourettes syndrome, which is a great resource.

And there www dot essts dot org slash directory and it gives an overview of the most important services and contact details of the Tourettes syndrome patient associations really around the world, and I think is the most up to date list at the moment. And this allows the professionals to share this information with their patients and open the way to support for them. And this directory has also been forming part of a chapter in the clinical textbook being written at the moment about Tourettes syndrome syndrome.

So by including it as part of a clinical textbook, it means that that point of diagnosis, clinicians can use the chapter to show the patient, maybe able photocopy it, what support associations exist in their country. It feels like what is needed then is a sort of more holistic view of the child and how to support them in a kind of multidisciplinary approach with the schools and the clinics and maybe having a clinical assessment where tics and co-occurring conditions are taken into account, a variety of treatment options might be offered, and a closer relationship between clinics and schools with more awareness of the condition.

Is that something that you think if we're thinking you mentioned the word schools standard earlier, is that some way towards that? And I should also mention that there are no nice guidelines for Tourettes syndrome, but what would you advise me on how to improve the situation at the moment?

Lucy Toghill: Definitely. In some cases, Tourettes syndrome can be very common very suddenly. And we've had a lot of covid. It actually have lots of reports of children, you know, having sudden symptoms. And this can be a massive life change for families and very traumatic, to say the least. You know, so it's really important that when this happens, families have access to clinicians much sooner and to those who are experienced and competent enough to offer advice or signposting to Tourettes regarding schools to get support in place straightaway.

Otherwise, we may be facing a lot more mental health issues. And that's a bit of a worry and possibly school refusal. You know, these children it's not a case of of not wanting to go to school. Sometimes its a case of they literally cannot because of these issues and what school refusal happens, that can be quite a slippery slope.

Dr Seonaid Anderson: And it feels like also, this closer relationship between schools and clinics might be helpful if clinicians can also sort of add to the information and training that you offer to schools, that doesn't seem to be any input from them but they have such such expertise and that it could be also sort of filtered into the information and training as well.

Lucy Toghill: There should be some flow of information between health care professionals and school. Ideally, that would be fantastic. And maybe by feeding this information to schools on behaviour interventions. And that's obviously that's not to say that we would advise teachers take on any behavioral intervention strategies. That certainly has to be delivered by a skilled therapist. But any advice on how to sort of aid that in school would be very useful for teachers, but also not expect teachers to carry out these interventions. But it does seem a bit of a missed opportunity to not feed back on what CAMS wants to see being done in children in school. So it works vice versa, really works both ways, you know.

Dr Seonaid Anderson: I think it's been a really interesting conversation, listening to all the thoughts and advice that you've got. If listeners to this podcast want to find out more information about the online training or Tourettes syndrome awareness, some of the strategies, etc., what would you suggest?

Lucy Toghill: Well, you know, the first sign of contact for any family or school would be Tourettes Action website. I would suggest where they will be offered information on an option of ways contact people. Through our live chat facility or our help desk. So I would definitely recommend they get in touch.

Dr Seonaid Anderson: Great. And the website address for that is www dot Tourettes Action dot org dot uk. They can look ACAMH the web. There's a Tourettes syndrome topic guide and other podcasts there. Lucy,, finally, what would your take home message be.

Lucy Toghill: I think really the important message really here is, is that spreading awareness is the key as well as working together and sharing knowledge. And it goes back to that say the old age saying of knowledge is power. And I think that by working together, we could make a more powerful positive impact and a real difference to so many people's lives.

Dr Seonaid Anderson: Thank you ever so much, Lucy. That was really fascinating. You can follow Lucy on Twitter, the handle @LucyToghill and her email is Lucy@ Tourettes-Action dot org . uk. You can follow me Doctor Seonaid Anderson on Twitter @SeonaidAnderso2 and email me at contact@neurodiverse dot org. If anyone listening wants more information on Tourettes syndrome they can visit the ACAMH website that's ACAMH dot org and you can follow them on social media by searching ACAMH.

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'Education, and Educating, about Tourettes' - Lucy Toghill 'In Conversation Tourettes Syndrome' Ep 2 - ACAMH

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'In Conversation Tourettes Syndrome' continues with Lucy Toghill, education manager of Tourettes Action discussing 'Education, and Educating, about Tourettes'.

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12 minutes

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Introduction to Social, Emotional and Mental Health Needs

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20 minutes

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There are some ups and downs to navigate when you're the only kid in school with hearing loss. Hear what it takes to go mainstream and what accommodations are needed.

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35 minutes.

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Webinar:  Supporting girls & young women with Aspergers & Autism in mainstream educational settings

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8 minutes

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40 minutes

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Harry J. Thompson was born in Edgware and grew up in Barnet in north London. He is currently based in London, UK. An avid reader & researcher, Harry speaks publicly and is heavily involved in projects & research on all topics around neurodiversity and autism; namely, Pathological Demand Avoidance, a behavior profile within the Autism Spectrum.

Harry began to write the first draft of his book in 2015. After connecting with many autistic & PDA families, he pivoted his direction and completed his book in about 6 weeks, a memoir entitled the PDA Paradox: The Highs and Lows of My Life on a Little-Known Part of the Autism Spectrum, published in February 2019. He launched his YouTube channel in 2017.

Harry has been elected to a Fellowship of the Royal Society of Arts (FRSA), in recognition of his work in the field of PDA, and also in recognition of the publication of his book.

BACKGROUND READING

The PDA Paradox, PDA, Harry's website, Harry's YouTube channel, Harry's Facebook page

Download a transcript of episode 54, made possible by supporters in our Patreon family. Click to join them.

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Episode 54: Understanding Pathological Demand Avoidance - The Neurodiversity Podcast

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Pathological Demand Avoidance is a newer concept for many in the US, but it's old hat for Harry Thompson.

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5 minutes

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Lots of kids struggle with math, but for some the difficulties go beyond a little bit of frustration. If your child's math troubles are serious - and persistent - they may be a sign of a learning disorder called dyscalculia.

Dyscalculia is a term used to describe specific learning disabilities that affect a child's ability to understand, learn, and perform math and number-based operations.

Though research on prevalence is limited, it's estimated that between 5 and 7% of elementary school aged children may have dyscalculia. It's also currently thought that dyscalculia occurs equally in both genders.

No. Not all difficulties in math class - even serious ones - are caused by dyscalculia. Disorders like dyslexia, visual or auditory processing, ADHD, and others can also impact a child's ability to meet expectations in completing math problems. It's also possible for kids who do have dyscalculia to have other learning disabilities as well. Many do.

A young child with dyscalculia may:

Have difficulty recognizing numbers

Be delayed in learning to count

Struggle to connect numerical symbols (5) with their corresponding words (five)

Have difficulty recognizing patterns and placing things in order

Lose track when counting

Need to use visual aids - like fingers - to help count

And as math becomes a major part of the school day, kids with dyscalculia are likely to:

Have significant difficulty learning basic math functions like addition and subtraction, times tables and more

Be unable to grasp the concepts behind word problems and other non-numerical math calculations

Have difficulty estimating how long it will take to complete a task

Struggle with math homework assignments and tests

Have difficulty keeping at grade-level in math

Struggle to process visual-spatial ideas like graphs and charts

The impact of dyscalculia doesn't stop when math class ends. The disorder can also affect kids outside of school. Children with dyscalculia also:

Have trouble remembering numbers such as zip codes, phone numbers, or game scores

Struggle with money matters such as making change, counting bills, calculating a tip, splitting a check or estimating how much something will cost.

Have difficulty judging the length of distances and how long it will take to get from one location to another

Struggle to remember directions

Have a hard time telling left from right

Get easily frustrated by games that require consistent score keeping, number strategies or counting

Have difficulty reading clocks and telling time

The biggest sign of a specific learning disorder is a notable discrepancy between ability and aptitude. A kid with dyscalculia may preform well in other subjects - such as English or history - but have very low grades in math and math-based classes.

In the DSM-5, dyscalculia is called "specific learning disability with impairment in mathematics," but "dyscalculia" is still an accepted term and is used by schools and learning specialists.

There is no specific test for dyscalculia. Taking the following steps can help you get your child the help and accommodations he needs.

Visit your doctor: Rule out any medical issues such as hearing or vision impairment that could be impacting your child's learning process.

Consult with your teacher: Ask your child's math teacher to note the areas where he has the most trouble, and any and all strategies that help.

Ask about other areas: It's estimated that as many as half of kids with dyscalculia also have another learning issue. Understanding your child's complete learning profile will help you advocate for his needs

Consult a specialist: Once you've done the groundwork, talk to a learning professional who can evaluate your child and give you specific feedback on how to help.

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How to Spot Dyscalculia - Child Mind Institute

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When math difficulties mean something more - what are the signs, symptoms causes and condition of dyscalculia, for parents and educators.

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30 minutes

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Fetal Alcohol Spectrum Disorder: Daniel and Jakob

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I0 minutes

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Developmental co-ordination disorder (DCD), also known as dyspraxia, is a condition affecting physical co-ordination. It causes a child to perform less well than expected in daily activities for their age, and appear to move clumsily.
This topic is about DCD in children, although the condition often causes continued problems into adulthood.

Find out more about DCD in adults.

Symptoms of DCD

Early developmental milestones of crawling, walking, self-feeding and dressing may be delayed in young children with DCD. Drawing, writing and performance in sports are also usually behind what is expected for their age.

Although signs of the condition are present from an early age, children vary widely in their rate of development. This means a definite diagnosis of DCD does not usually happen until a child with the condition is 5 years old or more.

Find out more about symptoms of DCD in children.

When to seek medical advice

If you're concerned about your child's health or development, talk to a GP or health visitor, or speak to a nurse, doctor or special educational needs co-ordinator (SENCO) at your child's school.

They may refer your child to an occupational therapist, paediatrician, or another health professional who can assess them and try to identify any developmental problems.

Find out more about diagnosing DCD in children.

Causes of DCD

Doing co-ordinated movements is a complex process that involves many different nerves and parts of the brain.

Any problem in this process could potentially lead to difficulties with movement and co-ordination.

It's not usually clear why co-ordination doesn't develop as well as other abilities in children with DCD.

However, a number of risk factors that can increase a child's likelihood of developing DCD have been identified.

These include:

being born prematurely, before the 37th week of pregnancy

being born with a low birth weight

having a family history of DCD, although it is not clear exactly which genes may be involved in the condition

the mother drinking alcohol or taking illegal drugs while pregnant

Treating DCD

There's no cure for DCD, but a number of therapies can help children to manage their problems.

These include:

being taught ways of do activities they find difficult, such as breaking down difficult movements into smaller parts and practicing them regularly

adapting tasks to make them easier, such as using special grips on pens and pencils so they are easier to hold

Although DCD does not affect how intelligent a child is, it can make it more difficult for them to learn and they may need extra help to keep up at school.

Treatment for DCD will be tailored to your child and usually involves a number of different healthcare professionals working together.

Although the physical co-ordination of a child with DCD will remain below average, this may be less of a problem as they get older and develop coping strategies. Some children may continue to have problems.

However, difficulties in school - particularly producing written work - can become much more prominent and require extra help from parents and teachers.

Find out more about treating DCD in children.

Dyspraxia or DCD?

While many people in the UK use the term dyspraxia to refer to the difficulties with movement and co-ordination that first develop in young children, this term is used less often by healthcare professionals.

Instead, most healthcare professionals use the term developmental co-ordination disorder (DCD) to describe the condition.

This term is generally preferred by healthcare professionals because dyspraxia can have several meanings.

For example, dyspraxia can be used to describe movement difficulties that happen later in life because of damage to the brain, such as from a stroke or head injury.

Some healthcare professionals may also use the term specific developmental disorder of motor function (SDDMF) to refer to DCD.

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Developmental co-ordination disorder (dyspraxia) in children

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Read about developmental co-ordination disorder (DCD), also known as dyspraxia, a condition that affects physical co-ordination.

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An in-depth talk about dyslexia with practical advice

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An in-depth talk about dyslexia with practical advice

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23 minutes

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Michael Rosen talks in depth about dyslexia: what it is, how to understand it and useful advice for parents and teachers, with expert Professor Maggie Snowling CBE, President of St John's College, Oxford.
Producer Beth O'Dea.

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Michael Rosen talks in depth about dyslexia with expert Professor Maggie Snowling.

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10 minutes

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Dysgraphia is a Greek word. The base word graph refers both to the hand’s function in writing and to the letters formed by the hand. The prefix dys indicates

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What we know and don’t yet know about DLD

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What we know and don’t yet know about DLD

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30 minutes.

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About the Author

Professor Courtenay Norbury is Professor of Developmental Disorders of Language and Communication at Psychology and Language Sciences, University College London. She is the Director of the Literacy, Language and Communication (LiLaC) Lab and a Fellow of the Royal College of Speech and Language Therapists.

She obtained her PhD in Experimental Psychology at the University of Oxford, working with Professor Dorothy Bishop on the overlapping language profiles that characterise autism spectrum disorder and 'specific' language impairment. Professor Norbury's current research focuses on language disorders and how language interacts with other aspects of development. She is leading SCALES, a population study of language development and disorder from school entry. She is also a founding member of the RADLD campaign.

Developmental Language Disorders (DLD)

Developmental language disorder (DLD) is diagnosed when a child's language skills are persistently below the level expected for the child's age. In DLD, language deficits occur in the absence of a known biomedical condition, such as autism spectrum disorder or Down syndrome, and interfere with the child's ability to communicate effectively with other people. Expressive language is characterised by non-specific words and short simple sentences to express meanings beyond the age at which children may be using more complex language. For example, when typical children can say 'that boy cuts shapes out paper with sharp scissors', the child with DLD might say 'him doing cuts' to express the same idea. Though such limitations of expressive language are readily apparent, for many children, understanding of language (receptive language) is also a challenge. Language disorders emerge in early childhood, have a significant impact on everyday social interactions or educational progress, and persist throughout the school years and into adulthood.

Aspects of language may be variably impaired and include:

Phonology (speech sounds)

Semantics (vocabulary)

Syntax (grammar) and morphology (endings on words that express grammatical relationships, like past tense -ed in English)

Discourse (narrative, conversation)

Pragmatics (social communication, inferencing, figurative language)

The exact cause of DLD is not known, but it is likely that there are several interacting genetic and environmental factors, rather than one single identifiable cause.

Behavioural interventions are the most common approach to treating DLD. Such interventions are typically carried out by speech-language therapists, though in some instances therapy may be delivered by parents or education staff under the supervision of the speech-language therapist. These interventions can significantly enhance a child's ability to communicate and can increase competence in specific areas of language, but, as yet, there is no cure for DLD.

Introduction

The terminology for children's language problems has been extremely variable and confusing, with many different labels being used by different professional groups (D. V. M. Bishop, 2017). In the UK, education services include DLD under the umbrella term SLCN, or speech, language and communication needs. In research, 'specific language impairment' or SLI was the term most commonly used, but there has been growing recognition that language is rarely selectively impaired and considerable controversy about the use of non-verbal IQ scores in diagnosis and treatment decisions. For example, children with non-verbal IQ scores below 85 are frequently excluded from research studies (Reilly et al., 2014) and denied access to specialist clinical services (Dockrell, Lindsay, Letchford, & Mackie, 2006).

The lack of consistency in terminology has been directly linked to poor public awareness of DLD (D.V.M. Bishop, 2010). To address this issue, the CATALISE consortium recently undertook a Delphi exercise to achieve consensus on diagnostic terms and criteria (D. V. M. Bishop, Snowling, Thompson, Greenhalgh, & and the, 2017). This cross-disciplinary panel of experts recommended the term Developmental Language Disorder, to denote a problem with language that stems from atypical developmental processes (as opposed to acquired brain damage, as in stroke or head injury) and to convey the serious nature and potential long term consequences of language deficits. DLD includes SLI, but allows for more variable non-verbal cognitive abilities. Including 'disorder' in the diagnostic label also provides consistency with other neurodevelopmental conditions such as 'autism spectrum disorder' or 'attention deficit hyperactivity disorder'.

Language is a multi-faceted system and it is likely that children will show variable patterns of skill and deficit. Efforts to identify sub-types of language disorder have generally not been successful and many large scale studies report that assessments of different language domains tend to load on a common language factor (Tomblin & Zhang, 2006). The current recommendation is that clinicians outline the particular child's profile of strength and deficit, recognising that this profile may change over time.

Phonology/speech sounds: Phonology is concerned with the rules that govern how sounds are combined together in words. Children with phonological deficits may fail to distinguish between certain speech sounds, such as 't' and 'k', so that 'cat' is produced as 'tat'. While these sorts of phonological errors are common in typically developing toddlers, some error patterns are atypical (e.g. replacing 't' with 'k' so that 'cat' becomes 'kak'), and most errors resolve by the time children are 4-5 years old (Bowen, 2015). Persistent phonological deficits may reduce intelligibility of speech and difficulties identifying and manipulating speech sounds within words (phonological awareness) is associated with difficulties learning to read.

Grammar/syntax: Grammar refers to the rules that govern how to combine words into sentences (syntax) and how to combine parts of words together such as adding grammatical endings to verbs like -ing or -ed (morphology). Grammar is often a disproportionate area of deficit for children with DLD. For instance, a child with DLD may say 'him walk to school', instead of 'he walked to school with his friends yesterday'. Comprehension of sentences can also be affected, especially when word order does not convey who did what to whom. For instance, there may be difficulty understanding sentences like 'the boy was chased by the girl' as children with DLD may interpret this as the boy doing the chasing.

Semantics: Semantics refers to children's ability to understand the meaning of words and how words are related to one another. Children with DLD often have difficulties learning new words. They may therefore have limited vocabularies and the words they do know may not have the same depth of understanding seen in children with typical language development (McGregor, Oleson, Bahnsen, & Duff, 2013).

Discourse and Pragmatics: Discourse refers to longer stretches of connected language, like conversation and narrative. Children with DLD very often have deficits in narrative (i.e. telling a story in a logical, coherent sequence) (Gillam et al., 2018) and may find it difficult to maintain the thread of conversation. Pragmatics refers to the appropriate use of language in social contexts. Pragmatic deficits may manifest as poor at turn-taking in conversation, maintaining the topic of conversation, or being able to repair conversations that breakdown by asking for clarification. Pragmatics may also refer to the comprehension and use of linguistic forms that rely on context to disambiguate meaning, for example, non-literal language like metaphors and idioms, or making an inference (Adams, 2002).

Prevalence

Prevalence estimates of DLD may vary depending on the severity criteria for language, and whether or not non-verbal ability is used as an exclusion criterion. The most recent UK population study (Norbury et al., 2016) yielded a prevalence estimate at age 5-6 years of 7.58%, equivalent to two children in every Year 1 class. An additional 2.34% of children met criteria for language disorder, but also had intellectual disability and/or another known biomedical condition, such as autism or Down syndrome. The functional impact of DLD was evident in that only 12% of children identified as having DLD met early curriculum targets.

While clinical reports suggest more boys are affected, epidemiological studies have not identified sex differences in prevalence (Norbury et al., 2016; Tomblin et al., 1997). This suggests that girls may be under-identified in community settings.

DLD rarely occurs in isolation and children with DLD are at increased risk for a range of co-occurring conditions including:

Attention deficit hyperactivity disorder (ADHD)

Motor deficit (e.g. Developmental Co-ordination Disorder)

Reading disorders (including both dyslexia and reading comprehension deficits)

Speech sound disorders

Social, emotional, and behaviour problems

In adolescence, children with a history of DLD are twice as likely as peers without language disorder to experience internalising, externalising, and ADHD-type psychopathologies (Yew & O'Kearney, 2013) and approximately 1/3 of adolescents referred to tertiary child and adolescent mental health services have previously unidentified language disorder (Cohen et al., 1998).

From school entry DLD is persistent and characterised by parallel rates of language growth relative to peers (Law, Tomblin, & Zhang, 2008; Norbury et al., 2017). As a consequence, there is currently little evidence that children with DLD are able to narrow the language gap with typically developing peers. Young people with DLD are therefore more likely to leave school with fewer academic qualifications (Snowling, Adams, Bishop, & Stothard, 2001) , and may experience on-going problems with employment, intimate relationships, and mental health (Conti-Ramsden, Durkin, Toseeb, Botting, & Pickles, 2018; Johnson, Beitchman, & Brownlie, 2010).

What we already know

Causes

A common perception in the general public is that DLD results from poor parenting and a lack of appropriate language input during development. While there are social gradients in language, such that DLD is more common in areas of socio-economic disadvantage (Law, Charlton, Dockrell, Gascoigne, McKean, & Theakston, 2017), it is in fact a much more complicated picture.

There is strong consensus that DLD is heavily influenced by genetic factors (D. V. M. Bishop, 2006). This evidence comes from twin studies, in which two twins are growing up together in the same household. These studies capitalise on the fact that there are two different kinds of twins; identical twins, who share the same genes, and non-identical (fraternal) twins who are genetically different. The question twin studies try to answer is 'how similar are twins on measures of language?' As all twins are exposed to the same home environment, differences in the strength of similarity between identical and fraternal twins is suggestive of genetic influence. Numerous studies have shown that while non-identical twins may differ radically in their language skills, identical twins tend to be much more similar in language ability. Of course, there can be some variation in the severity and persistence of DLD in identical twins, indicating that non-genetic factors (such as chance experiences, differences in school or peer experiences, illness, etc.) affect the course of disorder, but it is unusual to find a child with DLD who has an identical twin with typical language.

The recognition that genetic factors play a role also informs us about environmental circumstances. Many children with DLD will grow up to be adults with DLD. They will likely have lower levels of literacy and educational attainment (Snowling et al. 2001) and this may result in fewer opportunities to obtain high paying jobs (Conti-Ramsden et al. 2018; Johnson et al. 2010). Reading books to children or verbal communication may not come naturally to some parents of children with DLD. Thus, although there is considerable evidence that DLD is more common in children from socio-economically disadvantaged backgrounds, but this likely reflects both genetic and environmental vulnerabilities (D. V. Bishop, 2014).

Just because genetic factors are important does not mean that we are powerless to intervene. Parent language input and conversation, education, and specialist language interventions can all make meaningful improvements to children's language and communication skills.

Diagnosis and assessment

Longitudinal studies consistently demonstrate stability in language status from school entry, with greater instability when children are identified in the pre-school years (Bornstein, Hahn, & Putnick, 2016; McKean et al., 2017). More specifically, about 40% of children identified with language delay by age 4 have spontaneously resolved by school entry (D. V. Bishop & Edmundson, 1987). Early language skills predict small amounts of variance in later language ability (Duff, Reen, Plunkett, & Nation, 2015) and therefore universal screening is not recommended as it is not reliable enough and identifies too many false positives (D. V. Bishop, Snowling, Thompson, Greenhalgh, & consortium, 2016).

Consideration of multiple risk factors may improve identification (Christensen, Taylor, & Zubrick, 2017). Risk factors associated with persistent DLD include:

Family history of language or literacy deficits

Socio-economic disadvantage

Poor maternal education

Lower non-verbal cognitive abilities

Early developmental delays

DLD in the classroom may be difficult to notice if the child is quiet and able to follow the actions of other children in the classroom, without truly understanding the language or instructions. Teachers are more likely to notice obvious speech problems and/or behaviour difficulties, difficulties learning core curriculum content, and problems with learning how to read. Children presenting with such difficulties in the classroom should be referred for a language assessment.

Speech-language therapists are the primary professionals charged with assessment and diagnosis of DLD in the UK, though a multi-disciplinary team may be required for differential diagnosis of an associated biomedical condition. Associated conditions may include:

autism spectrum disorder (ASD)

sensori-neural hearing loss

neurodegenerative conditions

brain injury

acquired epileptic aphasia in childhood

genetic conditions such as Down syndrome

cerebral palsy

intellectual disability

Diagnosis of DLD requires the following:

The child has significant language deficits relative to age expectations that create obstacles to communication or learning in everyday life,

The child's language problems are persistent and unlikely to resolve by five years of age,

The problems are not associated with a known biomedical condition, as listed above

Diagnosis will involve parent/carer interview of family history, observation of the child's language and communication strategies in everyday contexts, and direct assessment of language skills using standardised assessment. Tomblin (Tomblin et al., 1997) proposed that assessment focus on the EpiSLI criterion: five composite scores representing performance in three domains of language (vocabulary, grammar, and narration) and two modalities (comprehension and production); clinicians may rely more heavily on omnibus tests of language, and measures of narrative ability have been shown to have good prognostic ability (D. V. Bishop & Edmundson, 1987). Cut-off scores on these measures are arbitrary, though typically children scoring in the lowest 7-10% on two or more composite scores are identified as having DLD. Test scores should always be considered in relation to functional impact (i.e. how language is impacting on school, social relationships, and self-esteem) in the diagnostic process.

Treatment

Currently, treatment for DLD is variable and many common approaches lack a sound evidence base. Service delivery may be focused on 'tiers' or 'levels' of intervention, including Universal approaches designed to benefit all children (e.g. specific training packages for education staff focused on enhancing language development), Targeted interventions that may be aimed at children with less severe deficits and carried out by non-specialist providers, and Specialist services in which SLTs provide direct and/or individualised treatments to children with the most-significant needs (Ebbels, McCartney, Slonims, Dockrell, & Norbury, 2018).

Large scale, high-quality randomised controlled trials are still relatively uncommon in the field and this makes it difficult to assess clinical efficacy (see Law, Dennis, Charlton, 2017, Cochrane Review protocol for overview). Children's language will improve over time, and without controlled studies, it can be hard to know how much of observed change is down to a specific treatment approach (cf. (Wake et al., 2011). In general, trials show significant, positive treatment effects for direct interventions with specific language targets including vocabulary, expressive grammar, and some elements of narrative and discourse (see Ebbels et al. 2018 for a summary). Receptive language skills appear much more resistant to treatment. Large scale studies of targeted language interventions show more variable outcomes (Bleses et al., 2017) and at best, modest treatment effects (Burgoyne, Gardner, Whiteley, Snowling, & Hulme, 2017; Fricke et al., 2017). Available evidence suggests that interventions in which education staff are asked to be the main delivery agents of SLT intervention, without on-going monitoring and support from specialist services (i.e. the "consultative" approach) are not effective (McCartney, Boyle, Ellis, Bannatyne, & Turnbull, 2011).

The take home message seems to be that children with DLD can learn aspects of language that they are specifically taught, but this learning rarely generalises to other aspects of language or other academic/developmental skills. In addition, changing a language trajectory remains challenging and is likely to take considerable time and on-going effort.

Areas of uncertainty

Despite recent advances in understanding the biological basis of DLD, we are still a long way from understanding how various genetic risk factors influence brain development, how differences in brain development affect learning, and why these differences would have disproportionate effects on language learning (Krishnan, Watkins, & Bishop, 2016). Nor do we fully understand how genetic and environmental influences interact to yield the heterogeneous profile of DLD that we see.

We don't know whether or how language disorders could be prevented, in part because early assessment of language is less reliable and therefore not strongly predictive of later language ability (Bornstein & Putnick, 2012). Many practitioners and policy makers advocate for early intervention, but a large percentage of young children will make significant language improvement without intervention. Prioritising the under-5s could therefore result in treating large numbers of typically developing children and divert precious therapy resources from children with persistent language learning needs (Norbury, 2015). On the other hand, resolving language disorder after the age of 4 is challenging. We need to know if there is an optimal age to intervene, and whether there may be periods later in development when intensive intervention may be particularly beneficial.

We know that children with DLD are at increased risk for poor social, emotional, and behavioural outcomes. We don't understand the mechanisms that underpin this risk but school failure (Tomblin, Zhang, Buckwalter, & Catts, 2000), variable education provisions (Bao, Brownlie, & Beitchman, 2016), poor peer negotiating skills (Im-Bolter, Cohen, & Farnia, 2013) and poor emotion recognition/regulation (Salmon, O'Kearney, Reese, & Fortune, 2016) are all potential candidates. Given the large numbers of children with DLD presenting to CAMHS services, we urgently need to know how children with DLD access 'talking therapies' and what modifications to standard psychological treatments are required to ensure maximum benefit for children with DLD and their families.

Our intervention evidence base is improving all the time, but we are still a long way from understanding what kinds of interventions work best, when, and for whom. In general, short periods of intervention may be sufficient to teach new vocabulary or grammatical forms (Ebbels, van der Lely, & Dockrell, 2007), but making significant improvements to a child's overall language function is likely to take considerable time and sustained input (McCartney, 2017). We do not know the impact of common co-occurring conditions, such as general cognitive deficits, attention deficits, motor deficits, on response to treatment, or whether improvements in language functioning generalise to other aspects of development (e.g. improved social skills, behaviour, academic attainment).

Providing the dosage necessary to make significant change in language proficiency remains an on-going challenge given limited therapeutic resources. Robust studies of on-line or computerised interventions for language are almost non-existent and urgently needed to evaluate whether such approaches could supplement face-to-face interventions.

What's in the pipeline?

Previously, brain imaging studies of DLD have focused on the integrity of left hemisphere language regions in the developing brain. More recently, researchers have focused on neural circuits involved in learning and memory, particularly circuits involved in learning motor sequences and statistical regularities in language input (Krishnan, Watkins & Bishop, 2016). Such studies could elucidate how interventions might circumvent language learning obstacles, either by increasing input, or providing more explicit cues to learning.

Many children with DLD are not referred to clinical services, or may wait a long time for speech-language therapy assessment. While speech-language therapists have traditionally been employed by the NHS, more and more education services are buying therapy time directly. Therapists working in collaboration with education staff may facilitate more direct links between the child's language needs and how these impact social and academic demands of the classroom.

There is increasing recognition that children with DLD grow up to be adults with considerable language needs. To date there has been little research on this population and few, if any, services to support them. Researchers and stakeholders are now exploring ways to identify these adults and what they require in terms of skills development, employment, and mental health.

Useful resources and websites

Afasic: Parent-focused charity for families of children with DLD.

The Communication Trust: The What Works database is a searchable database of commonly used intervention programmes and a rating of the quality of evidence available for that programme.

ICAN: Communication charity providing information and support to the children's workforce
Royal College of Speech Language Therapists
speechBITE: Australian database curating published trials of intervention and treatment efficacy searchable by language domain

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Bishop, D. V. (2014). Ten questions about terminology for children with unexplained language problems. Int J Lang Commun Disord, 49(4), 381-415. doi:10.1111/1460-6984.12101

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Christensen, D., Taylor, C. L., & Zubrick, S. R. (2017). Patterns of Multiple Risk Exposures for Low Receptive Vocabulary Growth 4-8 Years in the Longitudinal Study of Australian Children. PLoS One, 12(1), e0168804. doi:10.1371/journal.pone.0168804

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Dockrell, J. E., Lindsay, G., Letchford, B., & Mackie, C. (2006). Educational provision for children with specific speech and language difficulties: perspectives of speech and language therapy service managers. Int J Lang Commun Disord, 41(4), 423-440. doi:10.1080/13682820500442073

Duff, F. J., Reen, G., Plunkett, K., & Nation, K. (2015). Do infant vocabulary skills predict school-age language and literacy outcomes? J Child Psychol Psychiatry, 56(8), 848-856. doi:10.1111/jcpp.12378

Ebbels, S. H., McCartney, E., Slonims, V., Dockrell, J. E., & Norbury, C. F. (2018). Evidence-based pathways to intervention for children with language disorders. Int J Lang Commun Disord. doi:10.1111/1460-6984.12387

Ebbels, S. H., van der Lely, H. K., & Dockrell, J. E. (2007). Intervention for verb argument structure in children with persistent SLI: a randomized control trial. J Speech Lang Hear Res, 50(5), 1330-1349. doi:10.1044/1092-4388(2007/093)

Fricke, S., Burgoyne, K., Bowyer-Crane, C., Kyriacou, M., Zosimidou, A., Maxwell, L., . . . Hulme, C. (2017). The efficacy of early language intervention in mainstream school settings: a randomized controlled trial. J Child Psychol Psychiatry, 58(10), 1141-1151. doi:10.1111/jcpp.12737

Gillam, S. L., Olszewski, A., Squires, K., Wolfe, K., Slocum, T., & Gillam, R. B. (2018). Improving Narrative Production in Children With Language Disorders: An Early-Stage Efficacy Study of a Narrative Intervention Program. Lang Speech Hear Serv Sch, 49(2), 197-212. doi:10.1044/2017_LSHSS-17-0047

Im-Bolter, N., Cohen, N. J., & Farnia, F. (2013). I thought we were good: social cognition, figurative language, and adolescent psychopathology. J Child Psychol Psychiatry, 54(7), 724-732. doi:10.1111/jcpp.12067

Johnson, C. J., Beitchman, J. H., & Brownlie, E. B. (2010). Twenty-year follow-up of children with and without speech-language impairments: family, educational, occupational, and quality of life outcomes. Am J Speech Lang Pathol, 19(1), 51-65. doi:10.1044/1058-0360(2009/08-0083)

Krishnan, S., Watkins, K. E., & Bishop, D. V. (2016). Neurobiological Basis of Language Learning Difficulties. Trends Cogn Sci, 20(9), 701-714. doi:10.1016/j.tics.2016.06.012

Law, J., Tomblin, J. B., & Zhang, X. (2008). Characterizing the growth trajectories of language-impaired children between 7 and 11 years of age. J Speech Lang Hear Res, 51(3), 739-749. doi:10.1044/1092-4388(2008/052)

Law, J., Charlton, J., Dockrell, J., Gascoigne, M., McKean, C. and Theakston, A. (2017). Early Language Development: Needs, provision, and intervention for preschool children from socio-economically disadvantaged backgrounds: A Report for the Education Endowment Foundation.

Law J, Dennis JA, Charlton JJV. Speech and language therapy interventions for children with primary speech and/or language disorders. Cochrane Database of Systematic Reviews 2017, Issue 1. Art. No.: CD012490. DOI: 10.1002/14651858.CD012490.

McCartney, E. (2017). Commentary: So was it worth it? A commentary on Fricke et al. and Hagen et al. (2017). J Child Psychol Psychiatry, 58(10), 1152-1154. doi:10.1111/jcpp.12796

McCartney, E., Boyle, J., Ellis, S., Bannatyne, S., & Turnbull, M. (2011). Indirect language therapy for children with persistent language impairment in mainstream primary schools: outcomes from a cohort intervention. Int J Lang Commun Disord, 46(1), 74-82. doi:10.3109/13682820903560302

McGregor, K. K., Oleson, J., Bahnsen, A., & Duff, D. (2013). Children with developmental language impairment have vocabulary deficits characterized by limited breadth and depth. Int J Lang Commun Disord, 48(3), 307-319. doi:10.1111/1460-6984.12008

McKean, C., Wraith, D., Eadie, P., Cook, F., Mensah, F., & Reilly, S. (2017). Subgroups in language trajectories from 4 to 11 years: the nature and predictors of stable, improving and decreasing language trajectory groups. J Child Psychol Psychiatry, 58(10), 1081-1091. doi:10.1111/jcpp.12790

Norbury, C. F. (2015). Editorial: Early intervention in response to language delays-is there a danger of putting too many eggs in the wrong basket? J Child Psychol Psychiatry, 56(8), 835-836. doi:10.1111/jcpp.12446

Norbury, C. F., Gooch, D., Wray, C., Baird, G., Charman, T., Simonoff, E., . . . Pickles, A. (2016). The impact of nonverbal ability on prevalence and clinical presentation of language disorder: evidence from a population study. J Child Psychol Psychiatry, 57(11), 1247-1257. doi:10.1111/jcpp.12573

Norbury, C. F., Vamvakas, G., Gooch, D., Baird, G., Charman, T., Simonoff, E., & Pickles, A. (2017). Language growth in children with heterogeneous language disorders: a population study. J Child Psychol Psychiatry, 58(10), 1092-1105. doi:10.1111/jcpp.12793

Reilly, S., Tomblin, B., Law, J., McKean, C., Mensah, F. K., Morgan, A., . . . Wake, M. (2014). Specific language impairment: a convenient label for whom? Int J Lang Commun Disord, 49(4), 416-451. doi:10.1111/1460-6984.12102

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Tomblin, J. B., Zhang, X., Buckwalter, P., & Catts, H. (2000). The association of reading disability, behavioral disorders, and language impairment among second-grade children. J Child Psychol Psychiatry, 41(4), 473-482.

Wake, M., Tobin, S., Girolametto, L., Ukoumunne, O. C., Gold, L., Levickis, P., . . . Reilly, S. (2011). Outcomes of population based language promotion for slow to talk toddlers at ages 2 and 3 years: Let's Learn Language cluster randomised controlled trial. BMJ, 343, d4741. doi: 10.1136/bmj.d4741

Yew, S. G. K., & O'Kearney, R. (2013). Emotional and behavioural outcomes later in childhood and adolescence for children with specific language impairments: meta-analyses of controlled prospective studies. Journal of Child Psychology and Psychiatry, 54, 516-524. . doi: 10.1111/jcpp.12009

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DLD - Developmental Language Disorder - ACAMH

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Developmental language disorder (DLD) is diagnosed when a child's language skills are persistently below the level expected for the child's age. In DLD, language deficits occur in the absence of a known biomedical condition, such as autism spectrum disorder or Down syndrome, and interfere with the child's ability to communicate effectively with other people.

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25 minutes

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Supporting the visually impaired learner

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Supporting the visually impaired learner

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20 minutes

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Exploring common issues faced by blind and partially sighted students, and tips for achievement in the classroom
It is estimated that around 25,000 children and young people in England and Wales have a sight impairment that requires specialist education support. Of these, more than 60 per cent are educated in mainstream schools where their requirements might not be so easy to address. As many as half of young people with a sight impairment also have additional disabilities. So how can schools ensure that blind and partially sighted learners are best supported?

According to the Royal National Institute of Blind People (RNIB), severe visual impairment or blindness can substantially delay early childhood development and learning. Even a moderate visual impairment can have a notable impact. So what are the learning issues that schools should consider?

The main functional effects of visual impairment include central or peripheral vision loss, poor image sharpness, low contrast sensitivity or adaptability to light, and impaired eye movement or colour loss; but not all visual impairment is the same. A person's "functional revision" is a key concept here, referring to what can be seen, rather than what can't.

Adopting this mindset allows educators to consider how a learner's level of useful vision can be maximised. Considering the practical implications for the individual learner is vital; the distinctions in their educational needs will have a direct impact on the teaching and learning approaches required.

Blind learners

Educationally blind learners have a level of sight that is insufficient to learn visually, and so rely on their other senses. Distinguishing between those who have had some past sight and those who have never seen, may influence the visual concepts they can understand.
Questions to consider:

how much sight, if any, does the learner have and how useful is it?

how competent is the student with Braille and tactile skills?

what experience of vision does the learner have, if any?

how competent is the student in moving around the classroom independently?

Partially sighted learners

Partially sighted learners still work primarily through the visual medium, and make up the majority of learners with visual impairment. Their needs vary considerably and many work with normal print, which can create difficulties as their needs may be underestimated.
Questions to consider:

is the student's level of sight stable or variable and under what conditions?

is the learner's field of vision restricted?

what size/style of print is comfortable for the student?

does the learner have particular preferences for the learning environment, in terms of, for example, lighting or choice of seat?

Impact on learning

Stevie Wonder said, "Just because a man lacks the use of his eyes, doesn't mean he lacks vision." This is an important lesson; we may be inclined subconsciously to have different expectations of academic achievement for learners with visual impairment, but there is no direct correlation between visual impairment and intelligence. Most learners with visual impairment have the same range of intelligence and abilities as their sighted peers, just with additional barriers. More than a third will have some additional needs that may affect their learning.

Of course, additional barriers can affect a number of areas, such as the speed of working, communication skills (particularly reading or writing), environmental and spatial awareness, and social interaction, with a reduced ability to recognise body language and facial expressions. As a result, students can suffer from lower self-confidence which can have a negative impact on learning.

What is needed to succeed?

Inclusion is key to the successful education of students with visual impairment. According to The Centre for Studies in Inclusive Education, inclusive education means disabled and non-disabled young people learning together in ordinary school provision, with appropriate networks of support. They should have access to the same information, at the same time and, if possible, in the same way to participate in and enjoy mainstream settings to the best of their abilities, whatever their needs. Leoni Masterson, qualified teacher of the visually impaired (QTVI) at Linden Lodge School, explains: "Blind and visually impaired students face barriers to learning. If we can break down these barriers through tactile resources, we are promoting inclusion. They can take part in activities they've not been able to before."

In mainstream settings, it is important to make the most of specialist support that is available. Many mainstream educators will not have the skill set to teach specialist areas such as Braille, but QTVIs can visit and work closely with schools to advise how to meet children's needs through inclusive teaching and learning methodology. Each local authority has a vision impairment service which includes at least one QTVI.

Educators should also consider what they can do to enrich the learning process. As Leoni notes, "Visually impaired and blind children need a rich learning environment as sometimes they miss out on the visual clues." Sighted children's learning is constantly reinforced by things such as colours, shapes, people and landscapes. These give us a wealth of information subconsciously. Learners with visual impairment have reduced opportunities for incidental learning, so it is important to include as much multi-sensory learning in the classroom as possible, such as touch or smell. Also consider that visual and spatial concepts need more explanation; many learners with visual impairment struggle with concepts such as brighter versus darker, or telling which object is bigger at a glance.

Social inclusion is also important. Helen Keller said that "The chief handicap of the blind is not blindness, but the attitude of seeing people towards them." To reduce the risk of the student being ostracised by peers, consider the Circle of Friends approach, designed to enhance inclusion in a mainstream setting. It creates a support network for the student, with a peer group encouraged to look at their own behaviour, and understand the behaviour and difficulties of the student with visual impairment, in order to develop strategies and practical solutions to help them. In time, this can close the gap whilst strengthening core social skills.

Tips and ideas for the classroom

The classroom environment can have a significant impact on the success of teaching and learning. On top of dealing with core health and safety issues, it is important to consider the room's sensory nature. Your school might have had an audit conducted by a QTVI to suggest improvements, but here are some questions to consider for your classroom:

is the space clear and tidy to allow easier movement?

are frequently used resources kept in the same accessible place, and labelled?

is the level of lighting right for the learner?

are learners with visual impairment sitting close to a power source if they are using accessible ICT devices?

do you use real objects to support your teaching?

have you allowed adequate space for any special equipment or large print resources to be stored and used?

Accessible resources

Jennifer Williamson, resources technician at Joseph Clarke School, highlights the importance of accessible resources: "For students who have visual impairment, it is really important to strengthen their learning; therefore, learning materials need to be interesting enough to engage them."

Consider the issue of time for both staff and students. Visually impaired learners will often require extra time to process information and complete tasks, so using the simplest formats can help them. Make sure you and any support staff have the time to modify materials to include, for example, larger print or bolder colours. Providing both a print and a digital copy can be useful as this can be further adapted by the student to suit, if needed.

If you don't have time to modify items, look out for pre-created versions; a wide range of Braille materials, audio-visual resources, and tactile pictures and diagrams is available from various educational suppliers.

Role of access technology

Access technology has enormous potential for supporting learners with visual impairment across different ages and abilities. Assistive technology, such as audio-visual devices or software, allows students to work at their own pace and, with the right training, often independently. Technology isn't a magic wand, though; to be a success, it requires the right device, training and time. When this is achieved, students can take control of part of their learning journey, improving not only their academic progress, but also their self-confidence in learning and wider life.

If we can metaphorically open our eyes to the specific needs of visually impaired students, and take the time to recognise the impact they have on their learning and social integration, we can take the first steps towards making education an inclusive process.

Further information

Robene Dutta is Managing Director at educational publisher Mantra Lingua:
www.mantralingua.com

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Supporting the visually impaired learner * SEN Magazine

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Exploring common issues faced by blind and partially sighted students, and tips for achievement in the classroom

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Association for Child & Adolescent Mental Health 

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Association for Child & Adolescent Mental Health 

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Welcome to ACAMH

Our vision: Sharing best evidence, improving practice. We aspire for ACAMH to become a major portal, access point for anyone seeking the most expertly digested understanding and interpretations of the best evidence available.

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The Association for Child and Adolescent Mental Health (ACAMH)

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The Association for Child and Adolescent Mental Health (ACAMH) provides information, training and evidence to health professionals.

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Online British Sign Language Course - Learn BSL Today

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The fast, easy, & effective way to learn BSL. Our online British Sign Language course is fun, & flexible. Ideal as level 1 revision & beginners.

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Practical ideas for supporting and understanding emotional regulation.

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Podcast #2: Emotional regulation, behaviour and autism with Adem Cetindamar

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How trauma affects health across a lifetime.

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How trauma affects health across a lifetime.

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Childhood trauma isn’t something you just get over as you grow up. Pediatrician Nadine Burke Harris explains that the repeated stress of abuse, neglect and parents struggling with mental health or substance abuse issues has real, tangible effects on the development of the brain. This unfolds across a lifetime, to the point where those who’ve experienced high levels of trauma are at triple the risk for heart disease and lung cancer. An impassioned plea for pediatric medicine to confront the prevention and treatment of trauma, head-on.

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When kids have dyscalculia, it impacts how well they learn and do math in school. But having poor number sense and other math skills can also lead to all sorts of challenges in daily life.

For example, kids with dyscalculia may have trouble with amounts, time, distance, speed, counting, mental math, and remembering numbers. Those difficulties can show up in ways you might not expect or recognize as being related to math.

Here are 10 surprising ways dyscalculia can impact kids.

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Dyscalculia can impact kids in unexpected ways. Here are 10 surprising behaviors you may see in your child with dyscalculia.

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Dr. Jennifer Shields & Dr. Sarah Brown discuss Fetal Alcohol Spectrum Disorder (FASD) with freelance journalist Jo Carlowe.

FASD is the most common preventable non-genetic cause of neurodevelopmental disorders in the UK. FASD is an umbrella term used to describe the range of effects that can occur in an individual with prenatal alcohol exposure. These effects can have lifelong implications including physical, mental, behavior, and/or learning issues.

You can listen to this podcast directly on our website or on the following platforms; SoundCloud, iTunes, Spotify, CastBox, Deezer, Google Podcasts and Radio.com (not available in the EU).

Transcript

Intro Speaker: This podcast is brought to you by the Association for Child and Adolescent mental health, ACAMH for short. You can find more podcasts and other resources on our website www.acamh.org and follow us on social media by searching ACAMH.

Interviewer: Hello. Welcome to the in conversation podcast series for the Association for Child and Adolescent mental health or ACAMH for short. I'm Jo Carlowe, a freelance journalist with a specialism in Psychology. Today I'm interviewing principal clinical psychologist Dr. Jennifer Shields and consultant paediatrician Dr. Sarah Brown of the Scottish government fetal alcohol advisory and support team. Jennifer and Sarah will be giving us an overview on fetal alcohol spectrum disorder, FASD, which is the most common preventable non-genetic cause of neurodevelopmental disorders in the UK. Welcome Jennifer and Sarah. Can you start by introducing yourselves?

Dr. Sarah Brown: Hello. My name is Sarah Brown and I work alongside Jen in Ayrshire.

Dr. Jennifer Shields: And hi I'm Jennifer Shields. I'm a clinical psychologist based in this fetal alcoholic advisory support team.

Interviewer: Fantastic, and fetal alcohol spectrum disorder is an umbrella term for several diagnoses related to prenatal exposure to alcohol what precisely does FASD encompass?

Dr. Sarah Brown: So people may be more familiar with the term fetal alcohol syndrome, which was first described the late 1960s and 1970s seventies and that really described a syndrome where the were marked physical features such as small head, poor growth and quite distinct facial features. However, a bit like autism over the years we have realized it's much more of a broader spectrum and FASD would refer to the whole spectrum of conditions which for the vast majority in fact ninety percent have none of the physical features that you would see in the first described people alcohol syndrome group. So only ten percent would have different facial features, ninety percent of those affected by FASD have no physical features.

Dr. Jennifer Shields: According to other international classification systems, people might have heard of FASD under the diagnostic term of a new developmental disorder fetal alcohol exposed. And so that's just a different way of saying the same thing but FASD is the more recognized term.

Interviewer: Right? Thank you. There's always debate about whether or not women should drink during pregnancy. And I know in two thousand and sixteen the UK chief medical officer changed the guidance to say no alcohol should be consumed in pregnancy. So when you're talking about prenatal exposure to alcohol leading to FASD. Just how much drinking is harmful?

Dr. Jennifer Shields: To me it's a bit like drinking and driving, it's people realize that they shouldn't drink and drive because it increases your risk, and people accept that quite readily, however, when it comes to pregnancy and drinking those same risks the more you the more you more alcohol you drink during a pregnancy the higher the alcohol exposure to the pregnancy, the more likely you are of having FASD, but just because you drink during pregnancy doesn't mean that you will necessarily have an affected child. And that's what makes the messaging really really difficult.

We are certainly not advocating that people drink any alcohol in pregnancy and the arguments around what is the safe limit, is a bit like we're not having a similar conversation about what is the least number of cigarettes that you can smoke in pregnancy. It's because alcohol is so wrapped into our culture that people feel that we should be able to find the safe floor limit. But the evidence would tell us that we don't know what's safe and that's what makes the advice to be on the safest possible side of the advice being given as it's no alcohol, no risk.

Interviewer: Can you start by giving some details of the types of congenital anomalies that one sees caused by exposure to alcohol in the womb?

Dr. Jennifer Shields: So I think you can probably put these down into structural anomalies and maybe kind of more functional anomalies. In terms of the structure anomalies people may be familiar with the facial features which I mentioned briefly earlier, and that is the thinner blood that we note from new slightly smaller eye openings. We also know that alcohol can increase your risk of having a congenital heart abnormality and also differences within the way that your brain is developing. So you might have a very thin or absent corpus callosum. These are just the structural abnormalities that we can see and there's more than I've mentioned here. But what is common across all those affected previously by alcohol is the neurodevelopmental consequences of fetal alcoholic exposure.

Dr. Sarah Brown: Yeah, and in terms of the functional differences it might not be that these differences in the brain wiring would show up in a brain scan for example, but what we see are marked differences in how children are able to process information, protect extensity information, to remember to be able to problem-solve and so there's lots of thinking and cognitive problems that can be picked up through certain psychological assessments.

Interviewer: Right and how might it manifest in terms of behavioral issues?

Dr. Jennifer Shields: Yeah, so I think what's interesting about if you esteem and you think about the types of children who might present at a Child and Adolescent Mental Health Service, for example, a lot of these children are presenting with distress, and that distress might appear like significant behavioral difficulties through refusal, not wanting to remain in the classroom. They may have meltdowns at home, may lash out and and you know be verbally abusive and and seem to have meltdowns a lot of the time and sometimes this is a real relationship to how the brain is functioning and and how it might not be conducive to learning in a mainstream classroom environment where it's quite noisy. There's lots going on lots, to be filtered out, these children have very similar sensitive problems to that kids who are autistic and they have lots of learning and behavioral differences to other neurotypical children. And it just depends on them meeting a clinician who has the range of lenses in order to understand that this could be a potential explanation.

Interviewer: So what other signs are there to alert health professionals to the presence of FASD?

Dr. Sarah Brown: There are the facial features which may be picked up when a child is younger or in primary school. The main thing is taking a good alcohol history, which is something that I think people need to put more training in.

Dr. Jennifer Shields: Yeah. I mean, I guess just echoing what Sarah said about ninety percent of these children won't have facial features. The presence of an alcohol history, so that could come from a conversation that the ACAMH clinician is meeting with a family for the first time you'll might be able to ask a series of questions about pre-pregnancy lifestyle in a conversational way, not just asking did you drink in pregnancy? Because that normally illicits a "yes or no" response. Mainly a "no" response, actually asking about when somebody realized they were pregnant what the lifestyle was like up until then, what their diet, stress, smoking, alcohol or other drug taking status was, but in a very sort of conversational way and that is the sign that would alert you to the possibility of FASD. But as we said not all alcohol in most pregnancies lead to FASD.

Interviewer: And how well-trained are health professionals in asking those types of questions in what sounds like it has to be a non-judgmental way?

Dr. Sarah Brown: I think it's getting better. But I think you would agree Jen, there's a large piece of work needing done probably across many specialties within health, but also within multi-agency teams and really and education to raise the awareness and be able to speak about alcohol exposed pregnancies in our non-judgmental, non-stigmatizing manner, and I think the first step that would be embedded in our curriculums across professional groups regarding FASD in terms of awareness raising, but in particular taking that sense of alcohol history regardless of the assessment process that you think you might be needing to do. So if a child is brought in for an autism assessment I still think there's merit in taking a good alcohol history as part of your your developmental process.

Interviewer: In my intro I described FASD as the most common preventable non-genetic cause of neurodevelopmental disorders in the UK. Just how big is this problem? What is the prevalence?

Dr. Sarah Brown: Well, there is, I have to be upfront and say there's a lack of research in this area, I guess we've got the problem where there's no data. There's no problem. There's no action. And therefore there's not been a lot of impetus to get data unless until fairly recently, but there has now been in the last year Sharon Maguire and colleagues in Bristol did a screenings study. So this isn't about diagnostic outcomes, but from screening a large cohort of individuals as part of a previous study their estimates lie between six percent and seventeen percent. That sounds like a very high number, but when we look at the biological data that we have from a Glasgow based study which looked at meconium and biomarkers of alcohol, they found that forty percent of the children born had alcohol biomarkers and actually fifteen percent had those biomarkers to a very high level which indicated routine drinking in pregnancy to levels that would be teratogenic to a fetus. So it's a big issue that we need to confront.

Interviewer: I'm wondering whether people with FASD are unaware of what is happening to them and why they have the issues they have?

Dr. Sarah Brown: A really good question. I think a lot of the time the individuals that we've spoken with, in particular the adult community tell us that they're very aware that things are different for them, that they don't seem to fit this world like they see their peers coping with school and relationships and independent living and particularly for teenagers these individuals are very self-aware that things aren't right. And the consequence is that they have misunderstood presentations to see cams or mental health services at large and and receive interventions for things in like merging anxiety at really underpinning reason for that, difference is something new development and it's not been understood.

Interviewer: How is FASD diagnosed, when it all goes right. What happens?

Dr. Sarah Brown: So I think it would depend on the age of the individual. If a wee one is born and we know that there has been a high level of alcohol exposure during pregnancy. It may have a small head circumference, it may have facial features and that's something that can be detected you know at birth or shortly thereafter, and appropriate diagnoses depending on the timing and the family situation. It may be potentially diagnosed by that point. I was say for the vast majority it's later on during either childhood or into adulthood and that would depend on their physical presentation. But also the new developmental presentation. We certainly see children presenting at different ages and it seems to relate to when the kind of environment becomes slightly less supportive. So it might be going from preschool years and Nursery into primary one or reception think in England. Equally when it gets about middle school, middle primary school and children are being expected to do a little bit more for themselves, that might be where there's a bigger gap growing between them and their peer groups.

And again to secondary school, that's a big time for referral simply because the environment is not as supportive. You don't have a single classroom. You've got to get yourself around schools. So once the concern has been flagged up and if we have a positive alcohol history, then that is actually referred in boring your developmental assessment. And as part of that new development assessment, we would look to see what we think is the most likely cause that you would with any presenting industrial illness as an edit or is the psychologist?

And I think that if you felt that alcohol was a significant contributing factor, then we would involve our wider multiple disciplinary team. When the child is I mean, it's very difficult to do this I would say under the age of five even maybe seven depending on the child's ability. So it's often kind of that middle primary school age where they present, and at that point if they were having difficulties learning to ride a bike or are quite clumsy. You can catch a ball, tie their shoelaces, if it was functional difficulties related to their fine motor, gross motor skills. We would ask our colleagues in occupational therapy to see the child and assess them.

Dr. Jennifer Shields: For me having an assessment of their language standardized assessment can be very very useful. We know that the children, young people are often able to express themselves very, well. It may not be entirely age appropriate as to the peer group, but it is good enough that you wouldn't necessarily pick up on there being a big difference in the content or structure of their language, but that can often mask a difficulty with understanding language and they can be very lost within busy settings and busy classrooms and more complex instructions. So for me referring on to speech and language therapy to get a good understanding of both their core language skills, and the pragmatics of their language is really really important.

My role as a pediatrician is to look for I suppose the underlying cause or any associated health conditions. So for me, it's great examining whether they have any birthmarks, any structural abnormalities, if their head size is appropriate for their age. If they have any facial features. And but also thinking about any inherited vulnerability, so any genetic contributions that may make a child more prone to having some learning difficulties or difficulties with education or mental health issues. Another line of my work is in children who are care experienced. These are children who've been in the looked after in accommodated service, and often the histories that you have for these children are very patchy and the understanding they have of their family makeup or their family history can be lacking. I think it's particularly important for this group to ensure that there's not been a small inherited micro-deletion or duplication, which is the one small change in your genetic material, because that may offer an explanation as to why their parents struggle to meet their needs. And that might be in addition to a prenatal alcohol exposure because of moms difficulties, and knew what she was facing in life. So I think it's all about piecing together information as a pediatrician about that medical history and health history and any head injuries or severe illnesses really that might also have contributed to a new developmental picture. I think that one of the biggest kind of pieces of work is by my colleagues in Psychology and although Jane is the principal local psychologist for this we do work within a team where we have the skills within a cam psychology department who can all work with these these young people.

Interviewer: Right, you've described best practice, but how good are clinicians and other health professionals at making a correct diagnosis? Does that good practice happen enough?

Dr. Jennifer Shields: Well at the minute, I think it's fair to see that there are only two main centers or health boards that are providing that systematic approach to FASD assessment, and there are pockets of good practice happening in other health boards. But it's just new and emerging within their new developmental pathways. And so to my knowledge in Surrey and borders there's the national FASD center. Run by Dr. Raja Mukherjee and partners in Psychology. And he's also a consultant psychiatrist for a number of new developmental conditions, so, he's a very suddenly spread resource I must say. And there's ourselves in NHS Ayrshire and Arran but within Scotland we've been trying to encourage other health boards, and they are doing as I said pockets of assessment here and there for fetal alcohol spectrum disorders. Generally in a multi-disciplinary neuro developmental pathway approach. It's not specialist centres like you have in Surrey in England. So I feel like we have got a long way to go, but the fact that Scotland have now produced signed guidelines so it's sort of the move to the nice guidelines in England and we understand now in England there will be a nice quality standard for FASD which I hope will promote in clinicians and health professionals to get training to make the correct diagnosis because I think the risk of misdiagnosis is high and I think the further risks as a society of us to know what to identifying this will have huge impact on prevention or the lack of prevention.

Interviewer: So if the condition is misdiagnosed, mistaken, perhaps for autism spectrum disorder or ADHD. What harm is caused by that misdiagnosis?

Dr. Jennifer Shields: Well I think for some of those children there will be benefits of being understood as having a typical neurodevelopment and certainly, you know, children can benefit from stimulant medication, but perhaps for children with FASD there are going to be brain areas that are affected beyond social communication, social interaction that aren't identified and therefore the interventions that follow will not fit the profile of that child. And similarly, if children are misdiagnosed as having ADHD, and actually the reason for their distractibility, fidgetyness and impulsivity is coming from more a brain structured place rather than a neuro chemical place then potentially these children will have medication that has limited efficacy and certainly even in the kids that have FASD and ADHD there are different medications. That would be your first line medication that is different to general pathway for ADHD management.

But I mean, I'm a psychologist speaking about this but I've learned a lot from psychologists and psychiatrists who work in the FASD field and I hope I'm doing a good enough job to represent your thinking on that. But I think it's about accurate diagnosis coming from a good understanding of the profound strengths of different difficulties. If you think it's autism or ADHD, then you're going to be missing a large part of the picture.

Interviewer: So what happens when a correct diagnosis is made how are children with FASD and their families helped and perhaps you can talk about some of the existing interventions?

Dr. Jennifer Shields: Yes. So I think the correct diagnosis also comes as part of a bigger picture of the correct understanding of the brain profile. So for example, if a child has got language comprehension difficulties that are now eliminated by speech and language therapy that their motor difficulties are understood, that we can see that their executive function is very difficult for them to control and pulsivity, for example, there's a whole range of environmental and and multi-disciplinary interventions that would affect that profile. It's really about making sure the child gets the right understanding and sometimes very simple environmental adaptations in the school environment can have a huge benefit to the child. So bringing down the sensory stimulus changing the position in class, the teacher knowing about the comprehension problems, knowing about the motor difficulties, seeing that impulsivity in a different light as our brain based problem, not just behavior, can change the responses of others, the understanding of the family and can provide a meaningful lens by which the child's behaviors, distress and emotions can be understood. So there's lots of things that we can do for these children, but it does follow the correct profile and diagnosis being constructed.

Interviewer: What does the research show us with regard the efficacy and effectiveness of the existing support and interventions for children with FASD?

Dr. Jennifer Shields: The broad strokes of that is that the earlier that you identify and diagnose with appropriate the better the outcomes are for children, because people understand them, they are able to adapt the environment, adapt communication and offer support where appropriate. So, basically the evidence states if you're able to provide that understanding in the diagnosis before the age of eight, then you have got the greater ability to augment the trajectory of that child and steer them away from the negative outcomes, which can be you know, disengagement from school, addiction problems, homelessness, unemployment, and I guess generally being misunderstood for much of their adult lives. These children function at a different level to their chronological age.

So, as Sarah said adjusting expectations can have a huge meaning to families and to the individuals themselves and our adult community, tell us that that being understood is the most important bit. And actually that is what helps them to find a new self-identity, self-concept and does reduce the likelihood of mental health problems because in those who aren't identified 95% will have mental health difficulties. So it's as much as trying to promote the positive and harness the strengths and also trying to diminish all the barriers that lie in the way of the child and to avoid those negative outcomes.

Interviewer: If it is known that there has been prenatal alcohol exposure. Is there anything that can be done preventatively to reduce the risk of FASD?

Dr. Sarah Brown: I think the most important thing is to recognize if you're pregnant. Even if you have been drinking stopping drinking any further alcohol is extremely beneficial.

Dr. Jennifer Shields: The other thing is that the children that the research that we know about these children indicates that if you're able to offer stability particularly from an attachment perspective having care givers who are attuned, that they are these children protected from any trauma or further victimization because a lot of these children do have those complexities, but they don not cause the degree of neuro developmental difference as you know attachment trauma, and I went to be clear on that. But if there is to be harm reduction it is stopping alcohol at the earliest point ensuring the pregnancies are well supported, that the diet is good and in mom-to-be and that yeah, those those early years that is well supported as possible.

Interviewer: Right, and talking about research are either of you working on any specific trials or projects with regards FASD that you'd like to share?

Dr. Jennifer Shields: Yes so our teams looking to be much more active in the research fields, we're looking to build up evidence on the neurodevelopmental profiles of these children using all the results of the multi-disciplinary team assessments. But I think most importantly we are looking to hear the voices of those who have the lived experience and what we want to find out is perspectives on FASD diagnosis from the perspective of birth moms, from adoptive parents, from the individuals themselves who have FASD and to see what they think about how our future services should be shaped. So that's our priority for our team We are also going to be writing up papers on our service evaluation that we conducted in NHS Ayrshire and Arran, and we've also got interesting genetic findings that Sarah is looking to explore. So but with our partners in FASD, we've got some parenting intervention work that we're looking at and we're also excited to hear our colleagues are looking at active case ascertainment in England, which I think will be really helpful in terms of being able to get people that definitive answer of how prevalent FASD is in the UK. So there's lots happening, but we need lots more people to be interested in FASD and to help take that forward.

Interviewer: With regards the near future, what else is needed either in terms of research or policy that you would like to see come to fruition?

Dr. Sarah Brown: I think that what I would like to see is this been given a much higher recognition and platform within governments and also within the research communities of universities. The funding that is attributable to FASD is very very minimal and it is an area where we need so much more research and for it to be seen as being the priority that it needs to be in terms of improving the kind of social economic outlook for not just individuals, but also society and the damage that alcohol can do prenatally. And I think to me that would be be something that we all need to work on to get it on to the agendas of policy makers, funders and people who develop curriculums for all the relevant and professionals involved in care of young people and adults.

Interviewer: That's great, we've covered an awful lot. Is there anything else you'd like to add perhaps as a takeaway message for those listening to this podcast?

Dr. Sarah Brown: I mean I think for me I always say to people when I'm giving a lecture that if you don't remember anything else from this apart from no alcohol, no risk. If you protect any future pregnancies that you have from prenatal alcohol exposure. If you can spread that message with your family members, nieces, nephews, boyfriends, husbands. I mean to me it's about everyone playing their part in the prevention message. And it's as simple as if you're drinking don't drive. If your drinking it should be that you avoid pregnancy and ensuring that contraceptive options are explored both for the young people we work with and for anybody really in the community and I think that no alcohol, no risk message needs to be really used in lots of the contacts we have with people both socially and professionally.

Dr. Jennifer Shields: Yeah and for me, I think for me it's FASD is everybody's business whether you work or are a researcher in criminal justice, in addiction and mental health, in child and young people's health. Whether you work in cardiac or whether you work in a clinic that's for for something else. This has got to be on your radar. It's affecting so many people in so many different ways and many of which we don't understand that we can't allow this to just be something that child mental health or paediatric departments need to be involved in. This has got to be everybody's business and prevention is key. And for those that are affected. They just want to be seen. They describe themselves as hidden in plain sight and they require identification, diagnosis and support like any other child and we just need to make sure we upskill as many people as we can and raise awareness of FASD and that's why we thought this podcast would be a great thing to do and if people are able to share that then we would be very grateful.

Interviewer: Right, fantastic it's been really fascinating. Thank you Dr.Jennifer Shields and Dr.Sarah Brown for your enlightening overview of fetal alcohol spectrum disorder. For more details visit the ACAMH website www.acamh.org and Twitter at ACAMH. ACAMH is spelt ACAMH.

Outro: This podcast was brought to you by the Association for Child and Adolescent mental health, ACAMH for short.

ENDS
Principal Clinical Psychologist for the Scottish Government Fetal Alcohol Advisory and Support Team (FAAST) based in NHS Ayrshire and Arran. Principal Educator for Autism (NHS Education Scotland)
Following two years working for the West Dunbartonshire Acquired Brain Injury Service, Dr. Shields completed her Doctorate in Clinical Psychology at the University of Glasgow. Alongside her clinical post within the Child & Adolescent Mental Health Service in North Ayrshire, she also completed a Post Graduate Diploma in Paediatric Clinical Neuropsychology at University College London. Dr. Shields has a longstanding interest in neurodevelopmental conditions and acquired brain injury. She was a member of the working group for the SIGN Guideline for Autism (145) and is currently a member of the working group for the SIGN Guideline for FASD.
Consultant Paediatrician, Rainbow House Child Development Centre, NHS Ayrshire & Arran
Dr Brown has longstanding interests in advocating for the needs of Looked After and Accommodated Children and is the Lead Paediatrician for LAAC Health within Ayrshire. Dr Brown is the Lead Clinician for the Scottish Government Fetal Alcohol Advisory and Support Team and is committed to supporting the nationwide development of FASD services and improving clinician confidence in the diagnosis of FASD. She regularly teaches and presents at conferences on Fetal Alcohol Spectrum Disorders and is a member of the FASD SIGN Guideline Group.

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In Conversation... Fetal Alcohol Spectrum Disorder (FASD) - ACAMH

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Dr. Jennifer Shields & Dr. Sarah Brown discuss Fetal Alcohol Spectrum Disorder (FASD), the most common preventable non-genetic cause of neurodevelopmental disorders in the UK.

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Free from the OU: Dyslexia and inclusive practice

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Free from the OU: Dyslexia and inclusive practice

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Welcome to the course

Introduction to Dyslexia and Inclusive Practice is the first of three free online modules developed to complement the 2015 Education Scotland Route Map for Dyslexia and Inclusive Practice and support the professional standards from the General Teaching Council for Scotland.

This free module aims to provide teachers and local authority staff with an awareness of what dyslexia is, its impact and how it can be supported within an inclusive school community. It may also be of interest if you work in the vo luntary sector or simply have an interest in dyslexia and inclusive practice.

If you complete the module, you will receive a digital badge and a Statement of Participation (which can take up to 24 hours to be issued to your email address and appear in your profile).

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This course was originally published on 28 March 2017. This is the updated version, revised in March 2021.

This is the first of three modules by Dyslexia Scotland and Addressing Dyslexia with the support of the Opening Educational Practices in Scotland project.

The second module is Supporting Dyslexia, Inclusive Practice and Literacy.

The third module is Dyslexia: Identification and Support.

Dyslexia Scotland would like to offer people who have completed the 3 Modules the opportunity to sign up for free electronic membership with Dyslexia Scotland, as a way of continuing to build on their professional learning.
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Developmental Language Disorder Podcast with Wendy Lee

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Support children with developmental disabilities to reach their potential

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Support children with developmental disabilities to reach their potential

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The course is designed for healthcare professionals who may provide care for children with developmental disabilities, or other groups interested in the healthcare needs of these children. The course will be of particular benefit to:

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Help your child cope with hearing loss at primary school with expert advice from the National Deaf Children's Society.

According to the National Deaf Children's Society, there are around 50,000 deaf or hearing impaired children in the UK.

If your child is one of them, it's natural to have concerns about how their deafness will affect them - and ensuring they get a suitable education is likely to be one of your top priorities.

'It can be a daunting experience when you first find out your child has a hearing loss, as most parents have no experience of deafness,' says Colin Brook of the National Deaf Children's Society.
'However, there are a range of services, professionals and groups that can offer you and your child support.'

What causes deafness?

There are many sorts of hearing impairment that can affect children, with a variety of causes.

Sensorineural deafness, or nerve deafness, is a hearing loss in the inner ear. This usually means that the cochlea isn't working effectively, and is permanent.

Auditory neuropathy spectrum disorder (ANSD) occurs when sounds are received normally by the cochlea, but become disrupted as they travel to the brain.

Conductive deafness happens when sound can't pass efficiently through the outer and middle ear into the inner ear. This is often caused by blockages such as wax in the outer ear, or fluid in the middle ear, which is known as glue ear and affects eight out of 10 children by the age of 10. Conductive deafness is usually temporary, but can be permanent.

Deafness can affect one ear only (referred to as unilateral deafness, one-sided hearing loss or single-sided deafness), or both ears (bilateral hearing loss).

How deafness is managed will depend on the type and its causes. For example, glue ear often clears up on its own, although some children have minor surgery to insert grommets, which help prevent fluid build-up.

Children with more severe or enduring deafness may need hearing aids or hearing (cochlear) implants.

How deafness affects children at school

Although many deaf children thrive at school, hearing loss can have a big impact.

Analysis by the National Deaf Children's Society shows that deaf children struggle at every stage of their education: fewer than half reach the expected standard in Key Stage 2 English and maths SATs, compared to three quarters of other children.

And under half eventually leave education with two or more A levels, compared to almost two thirds of hearing students.

Some of the problems they may encounter include:

Difficulty hearing and understanding their teacher. For example, not all deaf children are able to lip read, and even if they can, only 30-40% of spoken English is distinguishable by lip reading.

Problems with classroom acoustics. Background noise can affect children's ability to hear, and certain sounds, like the buzz from fluorescent lighting, can cause interference with hearing aids and implants.

Speech, language and literacy difficulties, including problems picking up phonics.

Lack of resources. Because schools operate on such tight budgets, they may be unable to provide all the equipment and support deaf children need, such as one-to-one support and assistive technology.

Tiredness and irritability caused by the extra concentration they have to put in at school.

Needing time off for appointments, which leaves them having to catch up on missed work.

Social and emotional difficulties, including embarrassment about drawing attention to their issues, which can affect their learning, challenges in communicating with other children and forming friendships, and even bullying.

Choosing a school for a deaf child

According to the National Deaf Children's Society, 78% of deaf children attend mainstream schools, 6% attend mainstream schools with extra resources such as a specialist unit, 3% attend deaf schools and 12% attend other special schools.

You might wonder how your child will cope in a mainstream school, but very few deaf children have no useful hearing at all. Most can hear some sounds at certain frequencies and loudness, and with the use of hearing aids or implants, they are often able to hear more sounds.

This means that the majority of deaf children can be educated in a mainstream school, with the right support. Indeed, mainstream schools can't refuse a child a place on the grounds of their additional needs.

Alternatively, you could consider a special school that caters for children with a range of special needs, including deafness. This might be your preferred option if your child has an additional need, such as autism or a developmental delay, or if you feel their hearing loss would be better catered for.

There are also over 20 specialist schools for deaf children in the UK.

When it comes to choosing a school for your child, you'll want to weigh up lots of factors including:

The severity of your child's hearing loss and how it affects them.

How they communicate.

What sort of resources and support a school can offer, such as providing assistive technology or having staff members who can use sign language.

Whether the school has a specialist unit that might benefit your child, for example a speech and language unit.

The size of the school and average class sizes.

The classroom environment and acoustics.

Whether there are, or have been, other deaf children at the school.

The location of the school: special schools may not be as local, and some deaf schools are residential.

It's vital to visit the schools you're interested in, and speak to the person who will have responsibility for your child's needs. In a mainstream school, this is likely to be the special educational needs coordinator (SENCO).

If your child has hearing loss, you may want to have them assessed by the local authority for an Education, Health and Care Plan (EHCP) or, in Scotland, a Coordinated Support Plan (CSP).

This sets out the type of support and intervention that must be provided, by law, to meet your child's needs.

Your child is likely to need an EHCP or CSP to gain a place at a special school or deaf school. Having an EHCP or CSP also means that they must be allocated a place at your first choice of mainstream school.

Supporting deaf children at school

Whatever school your child attends, it's vital that they get the right support. This is especially true of mainstream schools that may have little experience of provision for deaf children.
Your child's individual needs should be discussed with the school, and you should be involved in working out how they can be supported.
Some of the ways in which schools can support children with hearing loss include:

Providing equipment such as a radio aids (a microphone worn by the teacher that work with hearing aids or implants) or a soundfield system to help them hear their teachers.

Providing support from a dedicated member of staff, for example a Teacher of the Deaf (ToD), communication support worker (CSW) or learning support assistant (LSA).

Improving the acoustics of the school or classroom, for instance by reducing background noise, and fitting carpets and curtains to help prevent echoing.

Training staff to teach in a deaf-friendly way, for example not turning away when talking, making sure your child has understood tasks, and making sure videos used in class have subtitles.

Allocating your child a 'hearing buddy' who can help to make sure they've understood instructions and rules, for example in PE when they may not be wearing their hearing aids or implants.

Ensuring your child sits at the front of the class: hearing technologies have an optimal range of one to three metres.

Providing a quiet space in the school where your child can go to communicate with their friends, for example at lunchtime.

Making referrals to secondary services such as speech and language therapy or educational psychology if necessary.

Helping staff and other children learn to communicate through signing, such as British sign language (BSL) or Sign Supported English (SSE).

Meeting with you regularly to discuss your child's needs, progress and any concerns. It's important to involve your child in conversations about how they can be supported, if possible.

You might want to put together a 'personal passport' that details things like how your child communicates, how to get their attention, what they can and can't hear, and any technology they use.

This will help your child's teacher and other staff (including those outside school, such as club leaders) to support them as best they can.

If there's a problem

If you're unhappy with how your child's needs are being provided for, book a meeting with their class teacher, SENCO and any other staff who are directly involved with their learning and/or wellbeing.
It's useful to look at the school's SEN policy - available on their website - to inform yourself of how they meet the needs of pupils with additional needs.
If the school is failing to follow its own policy, you can raise this as an issue and, if you're not satisfied with the response, escalate it to the school governor who has responsibility for SEN provision.

The National Deaf Children's Society also has a helpline (0808 800 8800) and live chat service that can provide free independent advice.

'I work with the school to find solutions'

Tracy Holtom is mum to Stephen, nine, who has profound bilateral hearing loss.
Stephen was given bilateral cochlear implants at the age of four. His preferred method of communication is spoken English; his oral speech is right for his chronological age, although we do use Makaton and some basic BSL as well, especially when introducing new topics or contexts.

It was always felt that Stephen would manage in a mainstream setting with the right support, so we chose our local school and I went to see the headteacher before submitting his application to ensure that they could facilitate his needs in a sympathetic and understanding manner.

Stephen gets 20 hours of one-to-one support per week, but that leaves him with 90 minutes without support each day. He was given funding by the local authority for a radio aid that makes it clearer for him to hear what his teacher says: useful in a classroom where there's lots of background noise.

All staff have undertaken deaf awareness training and Stephen himself did a presentation on clear communication, and produced posters and visual aids to help. I've also been into school to run some basic sign language and social skills sessions with his classmates.

We do have many hurdles. Stephen becomes frustrated easily, and finds it difficult to make and maintain friendships. He suffers with anxiety and gets scared when he can't hear clearly or work out what's going on.

Unfortunately, people see that Stephen has cochlear implants and forget that he is still deaf and has to use so many other strategies just to keep up with a simple conversation. This means I have to keep going back into school, raising issues and working with them to find solutions.

I'd advise other parents of deaf children to remember that nobody knows your child like you do. You are their advocate, so if you think something isn't right, question it.

Don't be afraid to tell the professionals if you think something won't work for your child, but also share your strategies and successes with them, educate them and work closely with them.

Also, make sure you take care of yourself so you can support your child, so ask for help, use support networks and don't take no for an answer.
The National Deaf Children's Society provides free, impartial, independent advice on all aspects of deafness in children, including choosing a school, making sure your child is well supported, and dealing with issues like bullying. To speak to an advisor, contact the helpline (0808 800 8800) or use the live chat service.

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Managing deafness and hearing impairments at school

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Help your child cope with deafness, hearing impairment and hearing loss at school: advice for parents

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Supporting autistic children in the classroom

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Supporting autistic children in the classroom

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12 hours.

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Hello, this course provides a comprehensive introduction into Good Practice in Autism Education. It has been developed specifically for anyone working with autistic children and young people in education, as well as autistic people themselves. The course starts by discussing what autism is, as well as the role of special educational needs and disabilities within schools. Inclusion can be a difficult concept to define, and different models of inclusive education are discussed, including mainstream schools, special schools, and autism units attached to mainstream schools. What constitutes good practice in autism education is discussed, as is how to consider the evidence base for these good practices. Finally, we explore how to share good practice you is education Europe-wide.

The course runs for four weeks, and contains a range of learning opportunities, including forums to discuss your ideas with other learners. The course is accessible to everyone working in education, so please come and join us.

Learning on this course

On every step of the course you can meet other learners, share your ideas and join in with active discussions in the comments.

What will you achieve?

By the end of the course, you'll be able to...

Identify the educational requirements of children on the autism spectrum with and without intellectual (learning) difficulties

Explain the concept of inclusion to promote inclusive culture, policies and practices within mainstream schools

Reflect on what constitutes good practice for autism within educational settings

Compare specific examples of good practice in autism education

Endorsers and supporters

funded by

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Autism and Education - Free Online Course - FutureLearn

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Understand more about autism and intellectual disabilities, and develop good practice in autism education with this free online course from the University of Bath.

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At own pace.

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The ADHD Foundation is the largest provider of training in ADHD and neurodevelopmental conditions for professionals in the UK.

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5 minutes

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Childhood Trauma and the Brain | UK Trauma Council

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20 minutes

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Kristy Forbes, Advocate, Speaker and PDA inclusion activist
@_kristyforbes

We are learning and evolving in our understanding of the human brain all the time. The neurodiversity movement is a conversation, in which we are updating and evolving our language, labels and identities in a dynamic interaction between human cognition and what is considered "normal" in the modern world. For example, it's only been "normal" to communicate through literacy for 100-150 years. Many people wonder what are the "right" words to use to describe neurominorities /neurodivergence / neurodiversity and report feeling confused about how to think about it. It feels confusing because creating structure out of complexity IS confusing and for those of use with professional expertise and lived experience, we are also still finding our way.

This is especially true when it comes to Pathological Demand Avoidance (PDA), a condition widely associated with Autism but one that is emerging as an identity in its own right. Even the name has come under scrutiny from many who experience it since the word "pathological" implies a medical condition that requires treatment. Once again, we have used language to otherize a way of being, framing it around the inconvenience it may cause and implying a deficit, despite the fact that many PDAers lead full and happy lives. For this reason, some people prefer to simply say "Demand Avoidant". Perhaps a few years from now the language will have evolved on this particular subject and a new name will emerge. Either way, the UK's PDA Society report that 70% of PDA young people were missing education, which is an exceptionally high level, with ongoing potential implications into adulthood and careers.

This week I wanted to provide some education and insight into PDA so I had a talk with Kristy Forbes from InTune Pathways and The Neurodivergent Co. Forbes is an Autistic support specialist for neurodivergent people, she is passionate about radical acceptance and the celebration of neurodiversity and a PDAer herself.

Understanding PDA

I started by asking her to help us define what Pathological Demand Avoidance is. She said "It tends to be a powerful inherent protective factor for a person who requires extreme autonomy and is autodidactic by nature. Anything that compromises the autonomy of that person escalates their anxiety to an extreme state, causing them to appear to be grasping for phenomenal amounts of control over people, places and things. The truth is, we're complying with a neurobiological response to compensate for the perceived loss of control. We're not always consciously choosing or deciding this but following a neurological command which is what PDA is.

For PDAers, that neurobiological response to our environment can often be disabling, preventing us from complying with the ideas, thoughts, wants and needs of others. It is often also disabling for us in terms of our own wants and needs. If I plan too much or get too excited about my own hobbies, for example, my brain will confuse that excitement and joyous anticipation with threat and danger, resulting in demand avoidance. The brain does not care for details; it's one job is to keep me alive and the PDA brain operates in a similar way to a brain that has experienced trauma.

The earlier years of a person's life are hardest with PDA as these are the years we have the least amount of autonomy. It is an extremely complex neurobiology that is more often than not grossly misunderstood."

Forbes makes an excellent point here about the misunderstandings that can occur when someone unfamiliar with PDA encounters it. For children this often comes in the form of being labelled "defiant" and the response is to try even harder to make them submit to an adults control. For adults it is usually being called "controlling" or "lazy".

As a society we are too quick to assume negative motivation and will generally interpret a PDAers actions through a neurotypical lens, when in fact we should be offering acceptance and finding ways to work through it.

Supporting PDA Adults

Since Pathological Demand Avoidance in children is usually more noticeable and more widely discussed I wanted Forbes to share more about what PDA looks like in adults. She said "For many, it can be absolutely debilitating, but this is really in alignment with the social model of disability. That is, how well understood, supported and accommodated a person is in their environment. PDA expression can be anything from never placing ourselves in a position of vulnerability, to completely avoiding anything that is not on our terms. Many people go their lives not knowing they are PDAers and just label themselves as lazy, stubborn, defiant, insubordinate, pathological procrastinators and worse".

It's an aspect of the social model of disability that is so important to keep focus on. Disability inclusion is not only about practical accommodations like ramps, video captions and quiet spaces, it must also be about changing attitudes that teach us to assume the worst when we find someone's behavior challenging.

I asked Forbes what she thought we could do to better support PDA colleagues at work? She said "Understanding. But even before that, suspension of disbelief. As humans, we tend to be completely fixated on behaviour-the outer expression of a person, and we make many assumptions about the behaviour without further exploration. PDA behaviour may "look" like the behaviour of another person but indicate something completely different.

Keeping an open mind, exploring possibilities and options with the PDAer, but mostly allowing for as much autonomy and opportunities for self-directed tasks and learning as possible. Using language of possibility and choice rather than being too directive or instructional, and allowing the person to work in a collaborative, equal means so that respect and connection is paramount. Directive, instructional language is to the PDA brain as peanuts are for the anaphylactic. We cannot change this response. It can't be rewarded or punished away, which is why it's best accepted as a neurobiology that requires radical acceptance.

Many of us work best for ourselves or in roles with varying tasks to keep the brain on its toes. If the PDA brain does the same thing over and over, it becomes monotonous and ends up being a demand which is where resistance comes in. If we continue on this path of monotony, and there are emotional experiences associated with it such as dread or boredom, the task then becomes a threat which the brain seeks to avoid at any cost."

In my coaching and co-coaching practice, I often focus on what Forbes terms "suspension of disbelief." Humans have a tendency to assume that they can read the intentions of others by relating it to their own behaviours. If I withdraw when I am furious, I might assume that others who withdraw are also furious. If I talk excitedly with my hands when I am angry, I might assume that others who are talking excitedly with their hands are also angry. But it might not be furious, it might be taking time to process. And it might not be angry, it might be scared. And when PDA-ers are misunderstood, and their intentions miscast, this can be terrifying, setting off a cycle of spiralling communication that ends in relationship breakdown. To work with this, it is necessary to unpick the behavioral evidence from the (mis)interpretations. A few co-coaching sessions with manager and employee can work wonders.

How Can We Accommodate Parents In The Workforce?

Given the number of PDA kids who are forced out of education, I also wanted to discuss with Forbes the parents who drop out of the workforce because they are supporting a PDA child. Sadly, this is most often mothers. I asked her what changes we could employers make to facilitate neurodivergent families that want to work, to be included? She said:

"It depends on the capacity of the parent, and their need for something outside the family home. I need projects to keep me thriving, my work is my absolute joy and keeps me centred and balanced which helps me to be a better parent. However, there have been periods where I've not been able to work at all due to the support needs of my children at different stages.

I have worked in extremely flexible positions for organisations deemed family friendly (and they were), allowing me to start and finish at times that suit. But neurodivergent family culture is so fluid in the sense that our disability, our supports and our needs fluctuate from moment to moment so even in our best planning there will still be times where it may not work out.

Currently, I'm supporting one of my children through processing significant trauma as the result of a lack of acceptance, understanding and appriopriate supports in the educational system. Supporting a child who has experienced trauma is far more common in PDA families than it should be. My work and my availability has been compromised temporarily. I can't imagine a workplace where I could negotiate adequate and appropriate supports for myself in my parenting and professional role.

I'm currently designing a program to support parents of neurodivergent children to work for themselves. Working from home is a huge help. Autonomy, flexibility. If anything, as an entire world, we've just learned that working from home is absolutely doable and possible and I'd strongly encourage employers to consider this when supporting ND families."

Flexibility is essential for families of disabled children. As an employer myself, I've found a great deal of talent, loyalty and dedication from employees who are given a bit of flexibility and understanding. I'd rather have three days a week of someone brilliant and committed to our cause than five days a week of someone who is lukewarm.

Why Does PDA Get Left Out?

Finally, I wanted to address the fact that PDA is often left out of the wider neurodiversity conversation, as if it is a secondary issue or a minor co-occurring condition. I asked Forbes why she thought that might be.

"It's a relatively new neurodivergent identity and is still being explored in research. The current research began in the 80s which in research terms is very young. Thus far, it's still being debated around it's origin as it tends to mimic trauma responses yet is different in origin. It tends to be quite simplified as well, so when people hear "Autism with extreme anxiety" or "Autism with demand avoidance", the language is deceptive and does PDA a huge disservice. This is so much more than simple demand avoidance. It is a complex and whole being experience that lacks appropriate and adequate language to express itself. It's difficult for PDAers to be active participants in terms of being the researchers ourselves because, well...PDA! There are numbers of us out here, however, growing in numbers sharing our experiences and we can all be found on The PDA Society website which has been a wonderful resource.

PDA is not a formal diagnosis in itself as the research continues, rather it's an identification or recognition alongside autism."

PDA is a great case study of how our understanding of neurodiversity is constantly evolving. In the last fifty years it has gone from being nameless, to a subtype of Autism, to possibly a neurodivergent identity in its own right. By continuing to research and gain valuable insight from people like Kristy Forbes we can start to find better ways to offer vital support and inclusion to PDAers everywhere. I follow her on Instagram and her insights have touched me personally, her messages about internalized self-reproach are exceptionally reassuring and empowering. She holds wise words from which many of us can learn.

Thank you Helen Doyle for support on this article.

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neurodivergent identities: a lesson on pathological demand avoidance

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Emerging Neurodivergent Identities: A Lesson On Pathological Demand Avoidance From Kristy Forbes

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Once again, we have used language to otherize a way of being, framing it around the inconvenience it may cause and implying a deficit, despite the fact that many PDAers lead full and happy lives.

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Amanda Davey’s excellent dyscalculia website 

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Amanda Davey’s excellent dyscalculia website 

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At your own pace

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About Dyscalculia | Amanda Davey Dyscalculia | Online Dyscalculia Tutoring

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A brief introduction to what dyscalculia is. Book Amanda Davey to provide bespoke online dyscalculia tutoring or a more detailed, interactive introduction to dyscalculia as part of her INSET services.

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2 hours

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What is Foetal Alcohol Spectrum Disorder?

Foetal alcohol spectrum disorder ( FASD) is the most common preventable cause of learning disability/difficulty in the UK It is caused by heavy maternal alcohol consumption in early pregnancy, either chronic daily use or binge drinking. A number of factors may exacerbate the effects of alcohol, including:

The pattern and timing of alcohol consumption

The stage of foetal development, and

Social behavioural factors, eg poverty and smoking.

FAS is an umbrella term used to encompass the range of possible effects of prenatal exposure to alcohol. Diagnoses include:

foetal alcohol syndrome (FAS) - the most easily recognisable condition due to characteristic facial features which are formed during the first trimester of pregnancy and dissipate with age

foetal alcohol effects (FAE) - the symptoms are not usually visible, e.g. behaviour disorders, attention deficits

partial foetal alcohol syndrome (pFAS) - some but not all of the criteria for FAS are met

alcohol related neurodevelopmental disorder (ARND) - can include attention deficits, behaviour disorders, obsessive/compulsive disorder, and

alcohol related birth defects (ARBD) - includes characteristics such as organ damage, heart defects, sight/hearing problems, skeletal damage and joint defects.

Listen to Ali, the adoptive mother of Jade, a child with FAS, as she explains what FAS is. Notice the variability of the FAS population.

It is estimated that that the current prevalence of FASD in populations of younger school children may be as high as two to five per cent in the USA and some western European countries (May et al, 2009).

For a diagnosis, four criteria must be met:

growth deficiency

characteristic facial features

central nervous system damage, and

confirmed alcohol exposure.

Canadian research (O'Malley, 2007) has shown that many children with FAS are initially misdiagnosed with ASD, Asperger syndrome, ADHD, or obsessive compulsive disorder (ODD).

The effects of FASD: brain damage

Brain damage is the most serious aspect of FASD. This damage is permanent. It can be accommodated but not reversed. Look at this image. It shows an example of extreme alcohol damage to the brain of a baby with FAS. As with this baby, those who have this degree of damage are unlikely to survive into infancy.

The effects of FASD: developmental profile

The developmental profile of children with FASD is variable. Expressive language may be in advance of their actual age and their reading skills may be chronologically appropriate. In areas such as social skills and emotional maturity they may be performing at half their developmental age.

Mathematical and numerical concepts are particularly challenging for these children in that, for some, the parietal lobe of the brain, which controls numeracy and computational activity in the brain may have significantly reduced functioning.

Listen to Ali, Jade's mother, again. This time she talks about Jade's 'spiky profile'. Jade has high cognitive skills but her affective skills (skills in emotional areas) and her ability to cope with everyday life are similar to those found in a much younger child.

Characteristics of children with ASD: Strengths

Characteristics of FAS are individual to each child depending on timing and dosage of maternal alcohol consumption. However, in general, children may be

Bright in some areas

Artistic, musical, athletic, have good practical skills

Friendly, helpful, affectionate and good with younger children, and

Determined and persistent.

Listen to Jade, a teenager with FAS, talking about the things she likes. Note the many strengths that Jade has.

Characteristics of children with ASD:
Likely difficulties

Characteristics of FAS are individual to each child depending on timing and dosage of maternal alcohol consumption. However, in general, children may:

have difficulty predicting and understanding the consequences of actions

despite a good vocabulary, struggle to understand what is said to them

have difficulty in separating fact from fantasy

display behaviours which will need support, such as lying, stealing, temper tantrums

have delayed physical, emotional and cognitive development (delayed developmental milestones)

be easily influenced by others

have poor impulse control, hyperactivity and poor memory

experience sensory processing difficulties

have social communication difficulties, particularly in the areas of interpreting the actions of others and in understanding how to respond in social situations; this is due to their impulsivity and lack of inhibition, and may lead to inappropriate sexual behaviour when older

have dietary and feeding difficulties/small stature/health problems such as frequent and persistent colds, visual and hearing impairments.

In a study by Carpenter (2011), teachers were asked to identify the challenges to the classroom learning environment presented by children with FAS. Here are the top ten:

Hyperactivity

Short attention span

Erratic mood swings

Poor memory

Lack of social skills

Difficulties with auditory/vocal processing

Difficulties with visual sequencing

Sensory integration difficulties - particularly lack of coordination

Poor retention of task instructions, and

Difficulties with numeracy - mathematics.

Responding to a child with FAS (2)

Listen to the short audio clips on the next slide in which Ali talks about Jade's difficulties at school.

Using the list on the previous screen and information from the audio clip, consider how you would respond to having a child with FAS in your classroom. What approaches might work best for each of the learning needs identified above?

Compare your answers with the findings from Carpenter's research on the next screen.

Responding to a child with FAS (1)

The brain damage associated with FAS cannot be reversed so teachers use a variety of approaches to optimise childrens' learning. Carpenter's research led to the identification of ten effective teaching responses to the ten learning needs profiled above:

A calm learning environment, free from clutter

Focused tasks presented in small steps

Personal space for children with plenty of support and praise

Visual structuring

Scripting/role play

Short, key, information-carrying instructions

Visual clarity and graphic simplicity

Frequent, short exercise programmes during the day

A breakdown of tasks with visual and tactile clues and time given for the child to complete the task, and

Multi-sensory learning which gives messages through a variety of sensory pathways.

Carpenter (in press) argues that children with complex learning disabilities such as foetal alcohol syndrome are presenting new profiles of learning need that cannot be accommodated through traditional curriculum frameworks. He argues for new and innovative 'practitioner-led, evidence-based approaches to teaching such children that generate personalised curriculum pathways'.

This requires:

Structured opportunities for the professional development of school staff to ensure that new professional capacities are supported, and

Effective teamwork involving the child, its family and all the professionals working with them.

Blackburn, C., Carpenter, B. and Egerton, J. (2012) Educating children and young people with Foetal Alcohol Spectrum Disorders: Constructing personalised pathways to learning. Routledge.

Carpenter, B. (2011) Pedagogically bereft! Improving learning outcomes for children with foetal alcohol spectrum disorders. British Journal of Special Education, Vol 38, No 1 pp37 - 43.

Blackburn, C. (2010) Facing the challenge and shaping the future for primary and secondary aged students with Foetal Alcohol Spectrum Disorders (FAS-eD Project). London: NOFAS-UK.

Blackburn, C., Carpenter, B. and Egerton, J. (2010) Shaping the future for children with foetal alcohol spectrum disorders. Support for Learning, 25 (3), 139-145.

British Medical Association (2007) Foetal Alcohol Spectrum Disorders: A guide for healthcare professionals. London: British Medical Association.

Clarren, S. (2004) Teaching Students with FASD. Alberta, Canada: Alberta Learning.

Connor, P. D. and Huggins, J. (2005) Prenatal development: fetal alcohol spectrum disorders. In: K. Thies (ed) Handbook of Human Development for Healthcare Professionals. Sudbury, MA: Jones and Bartlett Fetal Alcohol Syndrome Consultation, Education and Training Services, Inc. Publishers.

Ward, L., Mallett, R., Heslop, P. and Simons, K. (2003) Transition planning: how well does it work for young people with learning disabilities and their families?. British Journal of Special Education, 30 (3),132-137.

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Training materials for teachers of learners with severe, profound and complex learning difficulties

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What is Foetal Alcohol Spectrum Disorder? Foetal alcohol spectrum disorder ( FASD) is the most common preventable cause of learning disability/difficulty in the UK It is caused by heavy maternal alcohol consumption in early pregnancy, either chronic daily use or binge drinking.

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Free from Microsoft: dyslexia awareness 

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Free from Microsoft: dyslexia awareness 

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1 hour

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Educator Center Overview - Microsoft Learn Educator Center

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Microsoft Learn for Educators takes the best of Microsoft Learn online learning paths and helps you to bring instructor-led training materials from Microsoft into your courses. This program provides members with access to Microsoft ready-to-teach curriculum and teaching materials aligned to industry-recognized Microsoft Certifications.

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Introduction to DLD for classroom teachers.

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Introduction to DLD for classroom teachers.

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90 minutes.

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5 minutes

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www.pinterest.co.uk/douglassilas/_created/"WHAT IS GLOBAL DEVELOPMENTAL DELAY?"
Global Developmental Delay (GDD) is the general term used to describe a condition that occurs during the developmental period of a child between birth and 18 years. It is usually defined by the child being diagnosed with having a lower intellectual functioning than what is perceived as 'normal'. It is usually accompanied by having significant limitations in communication. It is said to affect about 1-3% of the population.

"WHAT ARE THE CAUSES OF GLOBAL DEVELOPMENTAL DELAY?"
The most common causes of GDD are chromosomal and/or genetic abnormalities such as Down's Syndrome and Fragile X Syndrome or abnormalities with the structure or development of the brain or spinal cord such as Cerebral Palsy or Spina Bifida.

Other causes can include prematurity - being born too early - or infections, such as Congenital Rubella or Meningitis.

There are a number of diagnostic tests that can be done to identify the underlying cause of GDD. Sometimes these causes can be treated to cure the developmental delay, or at least to prevent it worsening. However, often the cause is never able to be fully determined.

"WHAT ARE THE SIGNS OF GLOBAL DEVELOPMENTAL DELAY?"
The most common signs of GDD include:

The child is unable to sit on the floor without support by 8 months;

The child is unable to crawl by 12 months;

The child has poor social skills/ judgment;

The child is unable to roll over by 6 months;

The child has communication problems

The child has fine/ gross motor difficulties

The child shows aggressive behavior as a coping skill

In some children GDD is suspected soon after birth because of feeding difficulties or muscle-tone. In others it is suspected later when learning or behaviour difficulties occur at school.
"IS THERE ANY TREATMENT FOR GLOBAL DEVELOPMENTAL DELAY?"
There is no single treatment for GDD but there are ways to help some of the conditions that may be causing the delay. Once a pediatrician or neurologist has completed testing of the child, he/ she may advise on treatments for whatever underlying medical conditions that may exist. For example, hearing or visual impairment or therapeutic input by a Speech and Language Therapist, Occupational Therapist and Physiotherapist. It is possible that no cause will be found or that the cause that is identified may be difficult, if not impossible, to treat.

On the other hand, being aware of the conditions that are causing the delay can help parents, teachers and medical professionals to better counsel and guide children who are experiencing developmental problems.

For further information about Global Developmental Delay click here to visit our Pinterest board.

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"The hope you give parents ​is nothing short of a miracle" [a previous client]

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CPD Online Short Course: An introduction to speech, language and communication

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CPD Online Short Course: An introduction to speech, language and communication

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Own pace