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In recent weeks Spectrum 10K has dominated autistic space with many valid concerns raised by the community. On this page I will share my posts about Spectrum 10k along with other information and useful resources.

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The Effects of Behavior-Based Models on Neurodevelopment and Learning with Alfie Kohn & Prof. Torres

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Description

This On-Demand Course Includes:

2-hours instruction with Kelly + Chloe

6-months (180 days) unlimited access to the course

Access to 2 exclusive downloadable resources

Personalized certificate of completion

What you'll learn:

The issues with current trends in behavior assessment and supports

First-hand stories of the long-term detrimental impacts of certain behavioral approaches

Why the term 'challenging behavior' should be replaced with terms such as 'stress response' or 'dysregulation'

How to begin to see past observable behaviors and better understand the underlying causes that often contribute to what we see on the outside

The 5 Keys to Behavior Regulation which is an evidence-based framework for supporting the regulation needs in children and adults in a kinder, more effective manner:

Key 1: Building Positive Relationships + Understanding the Whys

Key 2: Meeting Sensory Needs

Key 3: Increasing Predictability & Use of Visual Supports

Key 4: Providing Communication Supports

Key 5: Interoception, Empowering Self-Regulation & Getting More of the Good Stuff

Many practical strategies for immediately implementing the 5 Keys to Behavior Regulation in a variety of settings

Information applicable to learners of a variety of ages, backgrounds, diagnoses & learning styles

Course Description:

For way too long, behavioral regulation needs have only been viewed at the surface level resulting in many children and adults being misunderstood and many underlying needs overlooked. This course will review the issues with the current trends in both behavior assessments as well as the traditional behavior-based supports. As an autistic self-advocate and someone that has been subject to surface behavioral approaches, Chloe will share first-hand accounts about the long-term detrimental impact that these approaches have had on her life. The emerging research that echoes Chloe's experiences will be shared and will provide further justification for why we need to see past observable behaviors and get better at supporting the underlying causes that often contribute to what it is we see on the outside. The 5 Keys to Behavioral Regulation provides a practical, evidence-based framework for offering strategies that respect and support the underlying regulation needs in children and adults with a variety of learning needs. During this course, many practical strategies will be shared (or demonstrated live!) that will help you implement the following 5 Keys needed for the successful support of behavior regulation:

· Key 1: Building Positive Relationships + Understanding the Whys

· Key 2: Meeting Sensory Needs

· Key 3: Increasing Predictability & Use of Visual Supports

· Key 4: Providing Communication Supports

· Key 5: Interoception, Empowering Self-Regulation & Getting More of the Good Stuff

The practical, evidence-based strategies shared during this course are easy to implement and are applicable in supporting learners of a variety of ages, backgrounds, diagnoses & learning styles. If you are ready to enhance your ability to better support the behavior regulation needs of the learners you serve, register today.

Who this course is for:

You are serving learners that have so-called challenging behaviors.

You are an Occupational Therapy Practitioner, Educator, Mental Health Provider, Speech and Language Pathologist, Behaviorist, or Caregiver who wants to help dysregulated learners be better supported.

You know there is a better way at providing behavior regulation supports, but you aren't sure where to start or you need more ideas.

You want to learn more about regulation needs directly from a self-advocate that has lived experiences.

You want to remain on the cutting edge of practice and follow what the research states as the best evidence-based approach for supporting behavior regulation.

You want to feel empowered with information you can use to create buy-in for a different approach to supporting behavior regulation

Featured review

Christy M. Amazing course! Chloe and Kelly are wonderful presenters and play so well off of each other. I loved every minute of the course and didn't want it to end. As a school-based OT I support lots of dysregulated students. For years, I've been on teams that strongly emphasize a 'surface behavior' approach with these students. I knew there was a better way to support their needs, but it was intimidating to contradict the current approach because I wasn't really sure what to suggest as an alternative. The information presented in this course gave me confidence to return to my job and advocate for a better approach to behavior regulation. I loved the 5 Keys framework and all of the practical strategies presented. If you want to learn how to better support behavior regulation needs, this is the right course for you. I feel so empowered! Thank you, Chloe and Kelly. Blessings.

So, who are we?:

We are Chloe Rothschild and Kelly Mahler and have been friends for 7 years and speaking together at conferences internationally for 5 years. It didn't take us long to discover that we share a lot of common passions including educating others about the provision of more kind and effective supports. We co-authored a book (with another friend Jarvas Alma) called My Interoception Workbook: A Guide for Adolescents, Teens & Adults in 2019.

More about Chloe: I'm a young adult with autism who is a very passionate self-advocate. I have been educating others about autism from my perspective for the past 9 years and enjoy speaking on a variety of topics related to autism including but not limited to: communication/AAC, Autism from my perspective/my journey, Interoception/Sensory and more. I received the 2020 David Joyce Self Advocate of the Year Award from the Autism Society of America and serve on the board of directors for the ARC of the United States and the OCALI Advisory board. Before COVID-19, I worked in an autism support classroom as a teacher's aide. Currently, I use my love of art to make the world brighter with my own business Creativity by Chloe Art.

More about Kelly: I earned a Doctorate in Occupational Therapy from Misericordia University, Dallas, PA and have been an occupational therapist for 18 years, serving school-aged children and adults. I'm winner of multiple awards including the 2020 American Occupational Therapy Association Emerging and Innovative Practice Award & a Mom's Choice Gold Medal. I am an international speaker and enjoy presenting on topics related to the twelve resources I've authored including:

You May Also Like These Courses:

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On-Demand Course: The 5 Keys to Behavior Regulation: How to Support 'Challenging Behavior' in a Kinder, More Effective Manner - Kelly Mahler

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For way too long, behavioral regulation needs have only been viewed at the surface level resulting in many children and adults being misunderstood and many underlying needs overlooked. As an autistic self-advocate and someone that has been subject to surface behavioral approaches, Chloe will share first-hand accounts about the long-term detrimental impact that these approaches have had on her life.

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CRAE Webinar Series: "The construction of autistic people by researchers" Monique Botha (03/02/2022)

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European speakers, autistic and allies, from Croatia, Hungary, Portugal, Slovenia, Scotland and Sweden are joined by visiting presenters from Australia and the US to share their knowledge on ABA and other approaches that many autistic people consider harmful, and ways to change or replace such practices.

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How trauma fits into a PBS Framework | bild

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This workshop provides an introduction to the common factors and developmental impacts of trauma across the lifespan. It provides a practical overview of how PBS can be delivered to support healing and growth for traumatized children and adults. Children and adults who need intensive care and support are often more vulnerable and therefore more likely to confront traumatic experiences.

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Neuroscience infographics and support for parents and helping professionals. Info about the polyvagal ladder, the stress cycle, attachment theory, trauma science, mirror neurons, the nervous system, mental health

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https://buckinghamshire.public-i.tv/.../webcast.../715974This video shows this happening- from 27 mins in, when Councillor Kayani asks her ‘offensive’ question.Commissioning of Support Services should involve the community the "support" will affect. It must also benefit and be cost-effective - PBS is not evidence-based - the harm compliance-based approaches cause is however well documented researched and proven.

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https://buckinghamshire.public-i.tv/.../webcast.../715974This video shows this happening- from 27 mins in, when Councillor Kayani asks her ‘offensive’ question.Commissioning of Support Services should involve the community the "support" will affect. It must also benefit and be cost-effective - PBS is not evidence-based - the harm compliance-based approaches cause is however well documented researched and proven.

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Sex Differences in Mental Health Problems and Psychiatric Hospitalization in Autistic Young Adults

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This cohort study examines sex differences in psychiatric diagnoses and hospitalizations in autistic compared with nonautistic young adults.

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Transition to Adulthood – Autistic Burnout and the Costs of Coping and Passing

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A primary school has been ordered to pay €12,000 compensation to a girl with Down syndrome after she had to spend most of her school day in a foyer outside the classroom away from her classmates.

At the Workplace Relations Commission (WRC), Adjudicator Thomas O'Driscoll said that the "unprecedented actions" of the school "reinforced the idea to the other children, and alarmingly for her sister that it might be normal to exclude children with special needs".

"This should never have been the case," he said.

Mr O'Driscoll found that the school discriminated against the girl on the grounds of disability under the Equal Status Act.

He said that he was satisfied that the redress should be at the upper end of the spectrum and that the school had treated the girl less favourably, by not affording her reasonable accommodation under the Equal Status Act.

The girl started in junior infants in September 2016 and was taken out of the school by her parents in April 2019 when she was in first class.

Mr O'Driscoll said: "This is an unfortunate case and I accept in the main that the school was not resourced as fully as it should have been, but nevertheless I found that there were aggravating factors."

He said he was satisfied from the evidence given that the reason for the decision of the parents to remove their daughter from the school was because of the exclusion of the child from full social and academic activity.

Mr O'Driscoll said that it was unacceptable that the school failed to consult with the girl's mother over her spending most of her day in a 'Learning Space' in the school's foyer.

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The girl's mother told the WRC that there was no communication from the school about the fact that her daughter was spending most of her school day outside of the classroom with her Special Needs Assistant (SNA).

The mother said she became concerned when her other daughter, who was in the class, told her that her sister was not in the classroom.

Asked why she brought the discrimination proceedings on behalf of her daughter, the mother said it was the last resort and it was very upsetting to the family that her daughter was not included in the class environment.

An Education Officer with Down Syndrome Ireland (DSI) stated that this was the first time that a school had refused an offer of support from DSI.

She said she had never come across a situation where a workstation for a child was located outside the classroom and that time in the classroom was negligible for the girl.
SNA did most of the teaching
In his findings, Mr O'Driscoll stated that he found it quite concerning that the girl was timetabled to be outside of the classroom for most of her learning day and that the learning, in essence, had become the prime responsibility of the SNA rather than the class teacher.

"Clear evidence was given that the role of the SNA was to look after the care needs of the complainant as well as to reinforce the learning picked up at the classroom," he said.

Mr O'Driscoll said the reality was that the girl had very little time allocated for learning and had neither access to her teacher, nor peer models.

He said undoubtedly the girl's behaviour was challenging for the staff, as they described it, but instead of seeing the "challenge" as how best to deliver and meet the educational needs of all in their charge, they attributed the problem to her.

Mr O'Driscoll added: "Their solution was to remove her from the situation. This defensiveness was manifested further in the refusal to accept a more than reasonable offer of specialised support from Down Syndrome Ireland."

He said he was satisfied that the girl could have been reasonably accommodated by a workstation in the classroom and only to be withdrawn when she was tired or significantly disruptive.

He said: "This measure would have been cost neutral."

Along with finding that the school discriminated against the girl on the grounds of disability, Mr O'Driscoll also found that the school breached its obligation to her by curtailing her opportunity to fully access and participate in education.
Girl was accommodated in 'learning space'
The school argued that it provided the best educational service available to the girl in light of the resources that were available to it.

The school principal, who has since retired, told the hearing that the 'learning space', could not be described as a corridor because the door in the vicinity is no longer used and he took Maths class in the area in the past and described it as very bright and very comfortable.

He said he felt that it was appropriate for the girl to be in the 'learning space' because she could be very vocal and that that this space allowed her scope to move around, and it would improve her gross motor skills.

The principal said he accepted that the idea of the 'Learning Space' was acted upon without consultation with the girl's parents and accepted that no student, other than the girl, had a timetable to be there.

He took no external advice from DSI because he believed both he and the teaching staff were professionally competent to deal with the needs of the girl.

When put to the principal that the SNA was not supposed to teach the girl, he said that the primary purpose of the SNA was to cater for the care needs of a pupil, but that in reality SNA's go way beyond what was written down in their job specification.

He accepted that the class teacher has the primary role of teaching.

When it was put to the principal to explain evidence that showed that the girl was spending only 45 minutes in class and two hours 45 minutes with the SNA, he reiterated that they were the professionals on site.

He said that he believed that the allocation of time was worked out in line with the needs of the girl as they saw it.

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School kept child with Down syndrome outside classroom

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A primary school has been ordered to pay €12,000 compensation to a girl with Down syndrome after she had to spend most of her school day in a foyer outside the classroom away from her classmates.

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But hey, whilst we are wading through disproved myths, why not add in a picture of a broken home, with the autistic child in the middle of it?

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But hey, whilst we are wading through disproved myths, why not add in a picture of a broken home, with the autistic child in the middle of it? https://t.co/F2dwkpwHHE

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In the training document, we feature as a series of faults.
Ignores the modern research such as Double Empathy Theory and the fine work of Crompton & team etc, and the research showing it's nonautistic people who walk away from our offers of friendship. https://t.co/f8Yai2asXM

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But hey, whilst we are wading through disproved myths, why not add in a picture of a broken home, with the autistic child in the middle of it? pic.twitter.com/F2dwkpwHHE
— Ann Memmott PgC MA (She or They) (@AnnMemmott) January 12, 2022

# data[].attributes.attachment_link.metadata.attachment_props_source.data.text
But hey, whilst we are wading through disproved myths, why not add in a picture of a broken home, with the autistic child in the middle of it? https://t.co/F2dwkpwHHE

# data[].attributes.attachment_link.metadata.attachment_props_source.includes.tweets[].text
In the training document, we feature as a series of faults.
Ignores the modern research such as Double Empathy Theory and the fine work of Crompton & team etc, and the research showing it's nonautistic people who walk away from our offers of friendship. https://t.co/f8Yai2asXM

# data[].attributes.attachment_link.metadata.attachment_props.original_text
But hey, whilst we are wading through disproved myths, why not add in a picture of a broken home, with the autistic child in the middle of it? https://t.co/F2dwkpwHHE

# data[].attributes.attachment_link.metadata.attachment_props.text
But hey, whilst we are wading through disproved myths, why not add in a picture of a broken home, with the autistic child in the middle of it?

# data[].attributes.attachment_link.metadata.attachment_props.referenced_tweets[].text
In the training document, we feature as a series of faults.
Ignores the modern research such as Double Empathy Theory and the fine work of Crompton & team etc, and the research showing it's nonautistic people who walk away from our offers of friendship. https://t.co/f8Yai2asXM

# data[].attributes.wish_content.attachment_props.text
We are now back into the 1980s with the ancient 'triad of impairments' stuff that has been so thoroughly disproved since. This is the illustration of it. On my profile page is the blog with the modern research in it.  One wonders why the leading centre hasn't read modern info.

# data[].attributes.wish_content.attachment_props.original_text
We are now back into the 1980s with the ancient 'triad of impairments' stuff that has been so thoroughly disproved since. This is the illustration of it. On my profile page is the blog with the modern research in it.  One wonders why the leading centre hasn't read modern info. https://t.co/fNunxKBEEg

# data[].attributes.wish_content.attachment_props.referenced_tweets[].text
"When a young person with ASD doesn’t want to do something, it could be that [e.g.]  he doesn’t understand what is being asked"

Note the gendering of this, if you would.

Continuing/

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We are now back into the 1980s with the ancient 'triad of impairments' stuff that has been so thoroughly disproved since. This is the illustration of it. On my profile page is the blog with the modern research in it. One wonders why the leading centre hasn't read modern info. pic.twitter.com/fNunxKBEEg
— Ann Memmott PgC MA (She or They) (@AnnMemmott) January 12, 2022

# data[].attributes.attachment_link.metadata.attachment_props_source.data.text
We are now back into the 1980s with the ancient 'triad of impairments' stuff that has been so thoroughly disproved since. This is the illustration of it. On my profile page is the blog with the modern research in it.  One wonders why the leading centre hasn't read modern info. https://t.co/fNunxKBEEg

# data[].attributes.attachment_link.metadata.attachment_props_source.includes.tweets[].text
"When a young person with ASD doesn’t want to do something, it could be that [e.g.]  he doesn’t understand what is being asked"

Note the gendering of this, if you would.

Continuing/

# data[].attributes.attachment_link.metadata.attachment_props.original_text
We are now back into the 1980s with the ancient 'triad of impairments' stuff that has been so thoroughly disproved since. This is the illustration of it. On my profile page is the blog with the modern research in it.  One wonders why the leading centre hasn't read modern info. https://t.co/fNunxKBEEg

# data[].attributes.attachment_link.metadata.attachment_props.text
We are now back into the 1980s with the ancient 'triad of impairments' stuff that has been so thoroughly disproved since. This is the illustration of it. On my profile page is the blog with the modern research in it.  One wonders why the leading centre hasn't read modern info.

# data[].attributes.attachment_link.metadata.attachment_props.referenced_tweets[].text
"When a young person with ASD doesn’t want to do something, it could be that [e.g.]  he doesn’t understand what is being asked"

Note the gendering of this, if you would.

Continuing/

# data[].attributes.wish_content.attachment_props.text
Well. That's not good.
A thread.
I have had sight of a document used to train NHS Professionals on inpatient mental health wards.
It is from a famous London hospital who claim particular expertise in autism.
Some extracts.  Content warnings aplenty.  Here we go/

# data[].attributes.wish_content.attachment_props.original_text
Well. That's not good.
A thread.
I have had sight of a document used to train NHS Professionals on inpatient mental health wards.
It is from a famous London hospital who claim particular expertise in autism.
Some extracts.  Content warnings aplenty.  Here we go/

# data[].attributes.attachment_link.embed_code
Well. That's not good.
A thread.
I have had sight of a document used to train NHS Professionals on inpatient mental health wards.
It is from a famous London hospital who claim particular expertise in autism.
Some extracts. Content warnings aplenty. Here we go/
— Ann Memmott PgC MA (She or They) (@AnnMemmott) January 12, 2022

# data[].attributes.attachment_link.metadata.attachment_props_source.data.text
Well. That's not good.
A thread.
I have had sight of a document used to train NHS Professionals on inpatient mental health wards.
It is from a famous London hospital who claim particular expertise in autism.
Some extracts.  Content warnings aplenty.  Here we go/

# data[].attributes.attachment_link.metadata.attachment_props.original_text
Well. That's not good.
A thread.
I have had sight of a document used to train NHS Professionals on inpatient mental health wards.
It is from a famous London hospital who claim particular expertise in autism.
Some extracts.  Content warnings aplenty.  Here we go/

# data[].attributes.attachment_link.metadata.attachment_props.text
Well. That's not good.
A thread.
I have had sight of a document used to train NHS Professionals on inpatient mental health wards.
It is from a famous London hospital who claim particular expertise in autism.
Some extracts.  Content warnings aplenty.  Here we go/

# data[].attributes.attachment_link.readable_text
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This collection brings together information on the UK's international obligations in the field of human rights.

This page brings together documents relevant to the UK's international obligations under the European Convention on Human Rights (ECHR) and the United Nations (UN) human rights treaties the UK has ratified which fall within the Ministry of Justice's remit.

Council of Europe

The Council of Europe is an international organisation for the promotion of democracy, human rights and the rule of law. It was founded by the Treaty of London in 1949 and is based in Strasbourg in France. It has 46 member States, including European Union Member States, but is entirely separate from the European Union.

The European Convention on Human Rights and its protocols

The European Convention on Human Rights (ECHR) is an international treaty between the States of the Council of Europe. The United Kingdom was one of the States that drafted the ECHR and was one of the first States to ratify it in 1951. The Convention came into force in 1953.

The current version of the Convention incorporates the amendments made by Protocols No. 11, 14 and 15, in 1998, 2010 and 2021 respectively.

The substantive rights and freedoms contained in the Convention are:

Article 2: the right to life

Article 3: the prohibition of torture and inhuman or degrading treatment

Article 4: the prohibition of slavery and forced labour

Article 5: the right to liberty and security

Article 6: the right to a fair trial

Article 7: the prohibition of retrospective criminal penalties

Article 8: the right to private and family life

Article 9: the freedom of thought, conscience and religion

Article 10: the freedom of expression

Article 11: the freedom of assembly and association

Article 12: the right to marry

Article 13: the right to an effective national remedy for breach of these rights

Article 14: the prohibition of discrimination in the protection of these rights

The UK has also ratified Protocol No. 13 to the Convention on the abolition of the death penalty in all circumstances, as well Protocol No. 1, which contains three additional rights:

Article 1 of Protocol No.1: the right to free enjoyment of property

Article 2 of Protocol No.1: the right to education

Article 3 of Protocol No.1: the right to free and fair elections

The European Court of Human Rights

The European Court of Human Rights (ECtHR) is an international court which rules on individual or State applications regarding possible violations of the rights set out in the European Convention on Human Rights. The Court's judgments and other information relevant to the UK are publicly available.

The ECtHR also publishes its Rules of Courts and Practice Directions.

It is assisted in its work by a Registry, which provides legal and administrative support, particularly in the processing and triaging of applications made to the Court.

The Committee of Ministers

The Committee of Ministers is the Council of Europe's decision-making body. It is made up of Ministers from the 46 States of the Council of Europe. Amongst other functions, the Committee of Ministers is responsible for supervising the execution of final judgments of the European Court of Human Rights.

It issues decisions and resolutions on the implementation of these judgments, on the basis of action plans and reports provided by the States concerned and following a defined set of rules for the supervision of the execution of judgments.

The Committee of Ministers is supported in this work by the Department for the Execution of Judgments of the European Court of Human Rights.

The Committee for the Prevention of Torture

The Committee for the Prevention of Torture (CPT) is a Council of Europe body which organises visits to places of detention, in order to assess how persons deprived of their liberty are treated. These places include, amongst others, prisons, juvenile detention centres, police stations, holding centres for immigration detainees, psychiatric hospitals and social care homes.

CPT delegations have unlimited access to places of detention, and the right to move inside such places without restriction. They interview persons deprived of their liberty in private and communicate freely with anyone who can provide information.
The UK's Response to the Committee for the Prevention of Torture's visit to the UK The CPT and the United Kingdom (coe.int)
Annual Reports to the Joint Committee on Human Rights

Every year, the government provides a report to the Parliament's Joint Committee on Human Rights (JCHR) which sets out the government's record on the implementation of human rights judgments.

United Nations

The Ministry of Justice has responsibility for the following UN Treaties:

The International Covenant on Civil and Political Rights

The International Covenant on Economic, Social and Cultural Rights

The Convention Against Torture

The UK regularly submits reports to the UN Treaty Bodies and Human Rights Committee in response to UN observations and recommendations. They are available below.

International Covenant on Civil and Political Rights

The International Covenant on Civil and Political Rights (ICCPR) aims to ensure the protection of civil and political rights. It came into force in 1976.

International Covenant on Economic, Social and Cultural Rights

As part of the International Covenant on Economic, Social and Cultural Rights (ICESCR), the UK agrees to ensure the enjoyment of economic, social and cultural rights, including the rights to education, fair and just conditions of work, an adequate standard of living, the highest attainable standard of health and social security.

Convention Against Torture

The United Nations Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment (UNCAT) aims to prevent torture and other acts of cruel, inhuman, or degrading treatment or punishment around the world.

The UK has also signed up to the Optional Protocol to the Convention against Torture and other Cruel, Inhuman or Degrading Treatment or Punishment (OPCAT) and ratified it in 2003. The OPCAT established a UN Subcommittee on the Prevention of Torture (SPT) whose role is to visit places of detention in member States and to make recommendations to the State being visited.

The SPT last visited the UK in 2019, with a subsequent report that the UK responded to. This was followed by a dialogue with the SPT in September 2021.

The OPCAT also requires States to establish one or several independent National Preventive Mechanisms (NPM) to carry out a system of regular visits to all places of detention in order to prevent torture and other cruel, inhuman or degrading treatment or punishment.

The UK's NPM, established in 2009, is a multi-body mechanism coordinated by a Secretariat. The membership reflects the UK's inspecting and monitoring mechanisms, so includes, for example, HM Inspectorate of Prisons, the Independent Monitoring Board and the Lay Observers.

Universal Periodic Review

The UN's Universal Periodic Review (UPR) is a peer-review of the human rights records of UN Member States, coordinated by the UN's Human Rights Council. The UPR process takes place over five-year cycles.
More information on the UPR
Common Core Document

The Common Core Document is a snapshot of the constitutional structure of, and key statistics on, the United Kingdom, the British Overseas Territories and the Crown Dependencies. It is part of all periodic reports from the UK to the UN.

Reports to the United Nations

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Human Rights: The UK's international human rights obligations

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https://humanrightstracker.com/en/un-treaty/crc/                                                               How to use the human rights tracker uk https://youtu.be/bCVyprLV8xw                        7/9  UN TREATIES agreed https://www.ohchr.org/en/core-international-human-rights-instruments-and-their-monitoring-bodies

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https://humanrightstracker.com/en/un-treaty/crc/                                                               How to use the human rights tracker uk https://youtu.be/bCVyprLV8xw                        7/9  UN TREATIES agreed https://www.ohchr.org/en/core-international-human-rights-instruments-and-their-monitoring-bodies

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Introduction

EUCAP is carrying out this survey in order to understand what action it can take to support its members and the wider autistic community about Applied Behaviour Analysis (ABA).

This survey is for autistic individuals only.

Responses received will be treated anonymously unless express permission is given for EUCAP to do otherwise.

Background

ABA is the application of interventions in a systematic way to change the rate of a behaviour using the principles of learning theory. Learning theory considers that all behaviours are conditioned or learned from the environment based on what happens before (the stimulus) and after (the consequence).

ABA can be used in different settings as a therapy or intervention, standalone or as part of a wider support model, eg in hospital, home, school, clinic, habilitation/rehabilitation.

Various interventions use or are derived from ABA and for this survey "ABA" includes these, for example:
- Discrete Trial Teaching (DTT)
- Early Intenstive Behavioural Intervention (EIBI)
- Naturalistic Developmental Behavioural Intervention (NDBI)
- Pivotal Response Training (PRT)
- Positive Behavioural Support (PBS)
- Verbal Behaviour

The main organisations that provide ABA training and practitioner accreditation/certification are the Association for Behavior Analysis International and the Behavior Analyst Certification Board.

ABA is most commonly used with autistic people. EUCAP is aware that much resource and effort is being spent by autistic advocates and allies with regard to ABA and that there is significant controversy amongst the autism communities.

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Introduction EUCAP is carrying out this survey in order to understand what action it can take to support its members and the wider autistic community about Applied Behaviour Analysis (ABA). This survey is for autistic individuals only. Responses received will be treated anonymously unless express permission is given for EUCAP to do otherwise.

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European speakers, autistic and allies, from Croatia, Hungary, Portugal, Slovenia, Scotland and Sweden are joined by visiting presenters from Australia and the US to share their knowledge on ABA and other approaches that many autistic people consider harmful, and ways to change or replace such practices.

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Government's scandalous cover up of suicide, violence & rape in UK schools, demands a Public Inquiry

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person centred planning - question CQC -Alix Quinn - PBS community- NO- AQ straddling the middle - JUST Reject instead inside out approach ( my view) - new system/understanding - new language

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person centred planning - question CQC -Alix Quinn - PBS community- NO- AQ straddling the middle - JUST Reject instead inside out approach ( my view) - new system/understanding - new language

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Lived experience discussion of Positive Behaviour Support

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The problem with behaviour support-Alexis Quinn

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local developmemt framework -statutory community including hard top reach 

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local developmemt framework -statutory community including hard top reach 

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What is a Statement of Community Involvement

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Impowerused  again- despite failures - last to money focused?@Talk Back Restrain

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Impowerused  again- despite failures - last to money focused?@Talk Back Restrain

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hoki wobble seat band and interventerbody guard-ehcp-the day in the life 

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hoki wobble seat band and interventerbody guard-ehcp-the day in the life 

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MH/SUICIDE / POOR OUTCOMES ARE  far too often due to systemic-all they had to do was listen

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MH/SUICIDE / POOR OUTCOMES ARE  far too often due to systemic-all they had to do was listen

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Health staff in England to get mandatory training on learning disability and autism after a long campaign by Paula, bereaved mother of #Autistic teen, Oliver McGowan, who died after being inappropriately treated in hospital. https://t.co/zwW8keFUXP

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Health staff in England to be trained on learning disability and autism

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Mandatory programme named after Oliver McGowan, whose mother led a campaign after his death in 2016

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Health staff in England to get mandatory training on learning disability and autism after a long campaign by Paula, bereaved mother of #Autistic teen, Oliver McGowan, who died after being inappropriately treated in hospital. https://t.co/zwW8keFUXP

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Health staff in England to get mandatory training on learning disability and autism after a long campaign by Paula, bereaved mother of #Autistic teen, Oliver McGowan, who died after being inappropriately treated in hospital. https://t.co/zwW8keFUXP
— Special Needs Jungle (@SpcialNdsJungle) November 2, 2022

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Health staff in England to be trained on learning disability and autism

# data[].attributes.attachment_link.metadata.attachment_props_source.data.entities.urls[].description
Mandatory programme named after Oliver McGowan, whose mother led a campaign after his death in 2016

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Health staff in England to get mandatory training on learning disability and autism after a long campaign by Paula, bereaved mother of #Autistic teen, Oliver McGowan, who died after being inappropriately treated in hospital. https://t.co/zwW8keFUXP

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Health staff in England to get mandatory training on learning disability and autism after a long campaign by Paula, bereaved mother of #Autistic teen, Oliver McGowan, who died after being inappropriately treated in hospital. https://t.co/zwW8keFUXP

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Health staff in England to get mandatory training on learning disability and autism after a long campaign by Paula, bereaved mother of #Autistic teen, Oliver McGowan, who died after being inappropriately treated in hospital. https://t.co/zwW8keFUXP

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Health staff in England to be trained on learning disability and autism

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Mandatory programme named after Oliver McGowan, whose mother led a campaign after his death in 2016

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Welcome to our Group for Research in Relationships and NeuroDiversity (GRRAND) at the Department of Psychology and Human Development at the UCL Institute of Education (IOE). We are a diverse bunch of researchers, scholar and art activists, advocates, service users and health consultants interested in human development and neurodiversity.

The term neurodiversity refers to variation in the human brain regarding sociability, learning, attention, mood and other mental functions. Traditionally, projects are made about neurodivergent people not with them, but GRRAND breaks the mould by redefining disabled people's narratives from the perspective of their lived experience. Relationships are one of the most important aspects of our lives, yet we can often forget just how crucial our connections with other people are for our physical and mental health and wellbeing. Neurodivergent people face unique challenges and opportunities to socially connect to family, friends, or their community and form relationships. Those who enjoy these connections are happier, physically healthier and live longer, with fewer mental health problems than people who are less well connected.

Together we aim to better understand social factors in the mental, emotional, and physical well-being of people with a diagnosis of autism and/or ADHD, syndromes and other neurodevelopmental conditions across the lifespan, and to deliver coproduced research and knowledge exchange with neurodivergent people in their preferred ways. To achieve this, we are collaborating with other internal and external researchers, advocates, school staff, service users, activists, service consultants and charity leaders.

To answer our research questions, we combine behavioural, phenomenological and community based participatory techniques together with a developmental approach in research. Importantly, we work with advisory and coproduction neurodivergent led community groups to ensure that our research meets the priorities and needs of the community we serve.

GRRAND is also interested in capturing and recording the many benefits of creative knowledge exchanges between autistic and non autistic researchers and artists. Through our work in the community, we often address the questions of authenticity and representation pertinent to creative interdisciplinary collaboration with neurodivergent participants in research and public engagement. Our activities set out to be mutually beneficial, offering communities the opportunity to develop their own creative practice, find new forms of self-expression, and engage with our research themes on their own terms.

Finally, we organise train and engage days as well as bespoke Autism Mental Health Short Courses to improve access and engagement with mental health services by erasing the damaging stereotypes that exist about disabled people, and celebrating their diverse strengths and unique perspectives.

Our team is always growing, so please do get in touch if you are interested in joining us.

You can stay updated with our news and latest publications on this website. You can also follow us on Twitter and Instagram.

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The term neurodiversity refers to variation in the human brain regarding sociability, learning, attention, mood and other mental functions. Traditionally, projects are made about neurodivergent people not with them, but GRRAND breaks the mould by redefining disabled people's narratives from the perspective of their lived experience.

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@B121_Justice6 @kimturner70 @Acland_Burghley @metpoliceuk @MPSCamden @CamdenSCP @CamdenCouncil @AnntoinetteBra1 @DCSHackney @mayorofhackney @HackneyAbbott In fact in tribute to anti bullying week on the 14 perhaps we should tell the stories of the hell our children have had to endure in @Acland_Burghley. Most of my sons friends didn’t even make it to the end of year 11 let alone leave unscathed by the failures there.

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@B121_Justice6 @kimturner70 @Acland_Burghley @metpoliceuk @MPSCamden @CamdenSCP @CamdenCouncil @AnntoinetteBra1 @DCSHackney @mayorofhackney @HackneyAbbott In fact in tribute to anti bullying week on the 14 perhaps we should tell the stories of the hell our children have had to endure in @Acland_Burghley. Most of my sons friends didn’t even make it to the end of year 11 let alone leave unscathed by the failures there.

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@rachelmamabear5 @kimturner70 @Acland_Burghley @metpoliceuk @MPSCamden @CamdenSCP @CamdenCouncil @AnntoinetteBra1 @DCSHackney @mayorofhackney @HackneyAbbott Whenever safeguarding fails totally in schools, the LA are not bothered. When children are assaulted and bruised by staff, excuses are made. It's the kids faults apparently. If similar injuries stemmed from home, family will be persecuted and hounded without evidence. Sickening..

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In fact in tribute to anti bullying week on the 14 perhaps we should tell the stories of the hell our children have had to endure in @Acland_Burghley. Most of my sons friends didn’t even make it to the end of year 11 let alone leave unscathed by the failures there.
— Rachel Jamaad💪🏻 (@rachelmamabear5) November 2, 2022

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@B121_Justice6 @kimturner70 @Acland_Burghley @metpoliceuk @MPSCamden @CamdenSCP @CamdenCouncil @AnntoinetteBra1 @DCSHackney @mayorofhackney @HackneyAbbott In fact in tribute to anti bullying week on the 14 perhaps we should tell the stories of the hell our children have had to endure in @Acland_Burghley. Most of my sons friends didn’t even make it to the end of year 11 let alone leave unscathed by the failures there.

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@rachelmamabear5 @kimturner70 @Acland_Burghley @metpoliceuk @MPSCamden @CamdenSCP @CamdenCouncil @AnntoinetteBra1 @DCSHackney @mayorofhackney @HackneyAbbott Whenever safeguarding fails totally in schools, the LA are not bothered. When children are assaulted and bruised by staff, excuses are made. It's the kids faults apparently. If similar injuries stemmed from home, family will be persecuted and hounded without evidence. Sickening..

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@B121_Justice6 @kimturner70 @Acland_Burghley @metpoliceuk @MPSCamden @CamdenSCP @CamdenCouncil @AnntoinetteBra1 @DCSHackney @mayorofhackney @HackneyAbbott In fact in tribute to anti bullying week on the 14 perhaps we should tell the stories of the hell our children have had to endure in @Acland_Burghley. Most of my sons friends didn’t even make it to the end of year 11 let alone leave unscathed by the failures there.

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@B121_Justice6 @kimturner70 @Acland_Burghley @metpoliceuk @MPSCamden @CamdenSCP @CamdenCouncil @AnntoinetteBra1 @DCSHackney @mayorofhackney @HackneyAbbott In fact in tribute to anti bullying week on the 14 perhaps we should tell the stories of the hell our children have had to endure in @Acland_Burghley. Most of my sons friends didn’t even make it to the end of year 11 let alone leave unscathed by the failures there.

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@rachelmamabear5 @kimturner70 @Acland_Burghley @metpoliceuk @MPSCamden @CamdenSCP @CamdenCouncil @AnntoinetteBra1 @DCSHackney @mayorofhackney @HackneyAbbott Whenever safeguarding fails totally in schools, the LA are not bothered. When children are assaulted and bruised by staff, excuses are made. It's the kids faults apparently. If similar injuries stemmed from home, family will be persecuted and hounded without evidence. Sickening..

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"WITH RIGH SUPPORT"-CAN BECOMEfunctional/worth while-awful language 

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"WITH RIGH SUPPORT"-CAN BECOMEfunctional/worth while-awful language 

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"As autistic physicians, we agree with the position of Dawson et al1: the neurodiversity movement regards autistic individuals to be both neurodivergent (diverging from the neurotypical majority) and disabled by environments not designed for autistic flourishing.1 Neurodiversity-informed therapeutic interventions therefore emphasize modification of external factors to better fit the autistic person.1 Therapeutic attempts to alter factors within the person must be done with utmost care to maintain the person’s autistic identity while helping support integration in the neurotypical world."

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"As autistic physicians, we agree with the position of Dawson et al1: the neurodiversity movement regards autistic individuals to be both neurodivergent (diverging from the neurotypical majority) and disabled by environments not designed for autistic flourishing.1 Neurodiversity-informed therapeutic interventions therefore emphasize modification of external factors to better fit the autistic person.1 Therapeutic attempts to alter factors within the person must be done with utmost care to maintain the person’s autistic identity while helping support integration in the neurotypical world."

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To the Editor As autistic physicians, we agree with the position of Dawson et al1: the neurodiversity movement regards autistic individuals to be both neurodivergent (diverging from the neurotypical majority) and disabled by environments not designed for autistic flourishing.1...

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European speakers, autistic and allies, from Croatia, Hungary, Portugal, Slovenia, Scotland and Sweden are joined by visiting presenters from Australia and the US to share their knowledge on ABA and other approaches that many autistic people consider harmful, and ways to change or replace such practices.

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Ableist approaches are"reforms" The research was conducted by The National Autistic Society, the Royal College of GPs and the UCL Institute of Education.

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Ableist approaches are"reforms" The research was conducted by The National Autistic Society, the Royal College of GPs and the UCL Institute of Education.

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Capabilities frameworks describe the skills, knowledge, and behaviours which people bring to their work and are used to:

support development and planning of the workforce

inform the design and delivery of education and training programmes

For staff in health, social care, and other sectors

Core capabilities frameworks for supporting autistic people and/or people with a learning disability are relevant to those working in any sector and all staff working across health and social care.

Core Capabilities Framework for
Supporting Autistic People

Click here to download the framework
Click here to download the Easy Read version
Click here to download a summary briefing paper
The framework comprises of 19 capabilities grouped into 5 domains:
Domain A. Understanding autism
Domain B. Personalised support
Domain C. Physical and mental health
Domain D. Risk, legislation and safeguarding
Domain E. Leadership and management, education and research

Core Capabilities Framework for
Supporting People with a Learning Disability

Click here to download the framework
Click here to download the Easy Read version
Click here to download a summary briefing paper

Domain A. Understanding learning disability
Domain B. Health and wellbeing
Domain C. Personalised care and support
Domain D. Risk, legislation and safeguarding
Domain E. Leadership and management, education and research
The framework comprises of 25 capabilities grouped into 5 domains:
For Allied Health Professionals (AHPs)
and Nursing staff

The 'advanced clinical practice framework' is relevant to Allied Health Professionals and Nursing staff in learning disability and autism services.

Advanced Clinical Practice Capabilities framework when working with people who have a learning disability and/or autism.
Click here to download the framework
Click here to download a summary briefing paper

Domain A. Personalised and collaborative working
Domain B. Health and wellbeing
Domain C. Personalised care and support
Domain D. Risk, legislation and safeguarding
Domain E. Leadership and management, education and research

Registration of interest
The framework comprises of 19 capabilities grouped into 5 domains:
By registering your details, you will be informed of any future activities to support the implementation of these frameworks (e.g. development of resources, evaluation, and/or updates).

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Supporting autistic people and/or people with a learning disability - Skills for Health

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Capabilities frameworks describe the skills, knowledge, and behaviours which people bring to their work and are used to: support development and planning of the workforce inform the design and delivery of education and training programmes For staff in health, social care, and other sectors Core capabilities frameworks for supporting autistic people and/or people with a ...

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The environment is everything -must be small-quiet background-this is why Bucks Kingsbrook /ARPs stuck on the side of large schools doesn't work- especially for previously traumatised kids. 

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The environment is everything -must be small-quiet background-this is why Bucks Kingsbrook /ARPs stuck on the side of large schools doesn't work- especially for previously traumatised kids. 

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About this Research Topic

Interdisciplinary scholars, including anthropology, sociology, philosophy, medicine, and neuroscience, have studied human sensory processing. This has led to an abundance of sensory processing theories which posit different conceptualizations of the relationship between human sensory processing and ...

Interdisciplinary scholars, including anthropology, sociology, philosophy, medicine, and neuroscience, have studied human sensory processing. This has led to an abundance of sensory processing theories which posit different conceptualizations of the relationship between human sensory processing and environmental conditions, cognition, emotions, mental health, physical health, and participation in meaningful activities. Humans experience a range of biological conditions which can result in distinct sensory processing patterns (e.g., autism spectrum disorders, schizophrenia, post-traumatic stress disorder, traumatic brain injury, developmental disorders, etc.). Despite formidable technological advances in neuroimaging to explore the most fundamental neural sensory activity, there remains a dearth of research exploring the relationship of human sensory processing to participate in meaningful activities, community integration, and inclusion in society. Research addressing this gap in the literature can contribute to the development of interventions, policies, and other initiatives to support the meaningful participation, quality of life, and inclusion of all persons regardless of their sensory processing capacities.

Research has demonstrated that sensory processing patterns are associated with mental health, physical health, emotional regulation, and a person's capacity to perform tasks. The majority of research on sensory processing has adopted the biomedical model which conceptualizes sensory processing mechanistically as transmitting sense data from the environment to the central nervous system for integration and processing. Research exploring these processes tends to use sophisticated neural imaging or heavily controlled lab experiments to isolate sensory processing. As a result, these approaches have generated understandings of sensory processing which are acontextual, ahistorical, and not reflective of the everyday human lived sensory experience. There is insufficient research exploring the lived experience of sensory processing and its relationship to participation in meaningful activities, community integration, and inclusion in society. Since a proportion of the human population experiences atypical sensory processing patterns, there is a critical need to further explore the aforementioned relationships to support the health and wellbeing of persons with diverse sensory processing. Therefore, the goal of this Research Topic is to expand understandings of the relationship between human sensory processing and meaningful participation, community integration, and inclusion.

We welcome empirical research and theoretical papers which explore the relationship between sensory processing and themes related to meaningful participation, community integration, and inclusion. We welcome research from diverse perspectives including anthropology, cognitive psychology, neuroscience, occupational science, performance studies, sociology, and others. Themes of particular interest include studies exploring: the lived experience of sensory processing using participatory methods, sensory processing and meaningful activity, sensory processing and community integration, sensory processing and inclusion, embodiment, emplacement, novel research methods for studying sensory processing, new methods for measuring sensory processing that capture the experience and environmental adaptations (e.g., physical, social, cultural, etc.) to support the participation of persons with atypical sensory processing.

Keywords: Meaningful participation, sensory processing, inclusion, community integration, justice

Important Note: All contributions to this Research Topic must be within the scope of the section and journal to which they are submitted, as defined in their mission statements. Frontiers reserves the right to guide an out-of-scope manuscript to a more suitable section or journal at any stage of peer review.

Topic Editors

Topic Coordinators

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Meaningful Participation and Sensory Processing

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Interdisciplinary scholars, including anthropology, sociology, philosophy, medicine, and neuroscience, have studied human sensory processing. This has led to an abundance of sensory processing theories which posit different conceptualizations of the relationship between human sensory processing and environmental conditions, cognition, emotions, mental health, physical health, and participation in meaningful activities.

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which organisations and schools restrain autistic /adhd / ld

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which organisations and schools restrain autistic /adhd / ld

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One of @Talkback_UK Employability participants doing a great job @greendragoneco (now known as #HogshawFarm), under the watchful eye of one of the resident wallabies! #Talkback #Employability #SupportedEmployment 🦘

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One of @Talkback_UK Employability participants doing a great job @greendragoneco (now known as #HogshawFarm), under the watchful eye of one of the resident wallabies! #Talkback #Employability #SupportedEmployment 🦘 https://t.co/Wq72lEHE3o

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One of @Talkback_UK Employability participants doing a great job @greendragoneco (now known as #HogshawFarm), under the watchful eye of one of the resident wallabies! #Talkback #Employability #SupportedEmployment 🦘 pic.twitter.com/Wq72lEHE3o
— Ian Rowlands💙💛 (@IanRowly38) November 2, 2022

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One of @Talkback_UK Employability participants doing a great job @greendragoneco (now known as #HogshawFarm), under the watchful eye of one of the resident wallabies! #Talkback #Employability #SupportedEmployment 🦘 https://t.co/Wq72lEHE3o

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One of @Talkback_UK Employability participants doing a great job @greendragoneco (now known as #HogshawFarm), under the watchful eye of one of the resident wallabies! #Talkback #Employability #SupportedEmployment 🦘 https://t.co/Wq72lEHE3o

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One of @Talkback_UK Employability participants doing a great job @greendragoneco (now known as #HogshawFarm), under the watchful eye of one of the resident wallabies! #Talkback #Employability #SupportedEmployment 🦘

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Important update on ABAI and the position statement regarding CESS | We will be providing an update on the current status of the process regarding a position statement from the Association for Behavior Analysis... | By NeuroClastic | Facebook

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0 views, 10 likes, 11 loves, 17 comments, 10 shares, Facebook Watch Videos from NeuroClastic: We will be providing an update on the current status of the process regarding a position statement from...

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TA's aren't Teachers - neither are most non neurodivergent specialists

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TA's aren't Teachers - neither are most non neurodivergent specialists

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Naomi Fisher: child-led learning, home education, unschool, agency, pschology | Podcast

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will take too long to reform - 5k for abuse isnt compensation for whole family

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will take too long to reform - 5k for abuse isnt compensation for whole family

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THE Royal Borough has paid a mother £5,250 for causing 'serious distress and anxiety' after her daughter, who has special needs, was without full-time education for seven months.

The Local Government and Social Care Ombudsman (LGO) ordered the council to pay and apologise to the mum for its failures and for it to review the case at a 'senior level'.

The daughter, who has autism and other complex educational needs, started in a mainstream school on a restricted part-time timetable in September 2020.

But her mother said she was 'struggling to manage the hours' at the school and eventually, the child stopped attending in March 2021. The mum said her daughter required a specialist school placement in order to receive a suitable education.

The council maintained its stance that a mainstream school could meet her child's needs despite one school telling officers it could not.

READ MORE: Cost of living: Single Slough mum who lives on one meal a day hospitalised TWICE

In April, the mother decided to send her daughter to an alternative education provider at her own expense. The girl's mother paid £2,100 for 10 weeks of part-time education through an alternative provider between April and July 2021. The council later funded it from September 2021.

Only by February 2022 did the Royal Borough change its mind and agreed with the girl's mum that her child would attend an independent specialist placement, which could meet her needs.

The LGO concluded the girl suffered a loss of full-time education between mid-March to mid-December 2021. Because of the eight-week school holiday during that time, she lost a total of seven months of education.

It also stated the LGO saw 'no evidence' from the council that the girl should not have been receiving full-time education and considered part-time education to be 'unsatisfactory'.

READ MORE: Wokingham woman to take part in Alzheimer's Society memory walk in Windsor

The LGO wrote: "I consider the council's failing to make full-time alternative education provision available for [the girl] to have had a serious adverse impact on her development and wellbeing.

"In addition, I consider [the mother] suffered serious distress and uncertainty during this period due to her daughter not receiving a full-time education as she was entitled to receive."

The council was ordered to pay the girl's mother £2,400 in compensation for her daughter's loss of education, reimburse the £2,100 the mom spent on alternative education, £500 for her 'serious distress and anxiety,' and £250 for her time and trouble pursuing her complaint.

A council spokesperson said: "The council has accepted the findings and recommendations of the Ombudsman and we've already written to the parent to apologise, paid the compensation, and will be reviewing this case to identify and make any necessary improvements."

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Council caused 'serious distress' to mother & daughter over special needs education

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THE Royal Borough has paid a mother £5,250 for causing 'serious distress and anxiety' after her daughter, who has special needs, was without full-time education for seven months. The Local Government and Social Care Ombudsman (LGO) ordered the council to pay and apologise to the mum for its failures and for it to review the case at a 'senior level'.

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https://www.buckinghamshireccg.nhs.uk/public/about-us/publishing-information/what-we-spend-and-how-we-spend-it/

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CCG Procurement Decision Register

The CCG Procurement Register is a register of procurement decisions taken, who was involved in making the decision and a summary of any conflicts of interest in relation to the decision and how this was managed by the CCG. This includes external contract tenders above financial thresholds as determined by EU legislation*.

This allows us to demonstrate that we are acting fairly and transparently and in the best interest of our patients and local population. All CCGs must maintain a register of procurement decisions taken.

This is in line with the requirements of guidance published by NHS England
NHS Buckinghamshire CCG Procurement Decisions Register JANUARY 2022.pdf
This document is updated after each meeting of the Audit Committee when Single Tender Waivers as documented on the register have formally been noted.

CCG Contract Registers

The CCG holds clinical and non-clinical Contract Registers, including those where relevant as also detailed in the CCG Procurement Register (where subject to formal external tender or single tender waiver). It also documents other contracts that the CCG negotiates and agrees both annually and at other frequencies.

This includes, for example, contracts for hospital and mental health services which are based upon a model contract template used nationally within the NHS (national standard contract) and are renewed annually, along with appropriate negotiation or re-negotiation of performance indicators, breach clauses and penalties. These negotiations and agreements are not otherwise classified as procurement decisions as they are not subject to formal external procurement or single tender waiver.

*Note: The CCG applies the relevant OJEU - Thresholds to its procurement activities and decisions. From 1 January 2020 the current threshold is £663,540. This only applies (in the CCG's case) to health care services. There is a much lower threshold for other goods and services (£106,047). This is total contract value and excludes VAT.

Clinical and non-clinical contract registers are available upon request.

Transparency Data

In accordance with the HM Treasury guidance 'Transparency - Publication of Spend over £25,000', NHS Buckinghamshire CCG has made a commitment to publish all transactions over £25,000. Each month's transactions will be published by the end of the following month.

Buckinghamshire 2022-23

Buckinghamshire 2021-22

Buckinghamshire 2020-21

Buckinghamshire 2019-20

Buckinghamshire 2018-19

Chiltern 2018 (to 31 March 2018)

Aylesbury 2018 (to 31 March 2018)

Chiltern 2017

Aylesbury Vale 2017

Chiltern 2016

Aylesbury Vale 2016

Chiltern 2015

Aylesbury Vale 2015

Chiltern 2014

Aylesbury Vale 2014

Chiltern 2013

Aylesbury Vale 2013

National Allocation of Resources

To see how NHS England allocates resources to CCGs see the NHS England Resources for CCGs page.

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The CCG Procurement Register is a register of procurement decisions taken, who was involved in making the decision and a summary of any conflicts of interest in relation to the decision and how this was managed by the CCG. This includes external contract tenders above financial thresholds as determined by EU legislation*.

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Supplementary Evidence (download as PDF)

1. PBS is a brand of ABA

2. PBS does not support human rights

3. PBS is not supported by quality evidence

4. The extent to which PBS is not supported is widespread

5. Harms and risks of behaviourist interventions

PBS is a brand of ABA

1. Positive Behaviour Support and Applied Behaviour Analysis (Johnston et al 2006)
Paper published in ABA International journal about the relationship of ABA and PBS.

2. Positive Behavioural Suppport and Applied Behavior Analysis: A Familial Alliance (2008)
"Recently, there has been some confusion regarding the definition of PBS and, in particular, its relationship to ABA. In this article, it was noted that the practice of PBS and ABA, in some instances, can be indistinguishable but that important differences in definitions and emphases mandate an explicit distinction."

3. UK Society for Behaviour Analysis - About Behaviour Analysis
Scroll to the bottom of the page where it confirms PBS is based on behaviour analysis and that "it should be overseen by a qualified Behaviour Analyst."

4. PBS Academy UK competency framework (2015)
Page 7 sets out the PBS framework. Point 5 "Primary use of principles and procedures from behaviour analysis", point 6 "The secondary use of other complementary, evidence-based approaches to support behaviour change".

5. BiLD Introduction to PBS video (at 4:45 mins)

6. Autism, ABA and PBS some questions (2017)
Article looking at the relationship between ABA and PBS.

PBS does not support human rights

1. Care Quality Commission review of PBS plans in "Out of Sight - Who Cares?" report (Oct 2020)
Findings included PBS plans omitting diagnosis and inadequate consideration of sensory needs.

British Institute of Human Rights noted dignity concerns with PBS plans as "people were seen not as individuals but as a condition or a collection of negative behaviours"

2. Ethical Concerns with ABA for Autism, Kennedy Institute of Ethics Journal 2020

Written by a philosopher and ethicist this paper concludes that "ABA manifests systematic violations of the fundamental tenets of bioethics. Moreover, the supposed benefits of the treatment not only fail to mitigate these violations, but often exacerbate them. Warnings of the perils of ABA are not original to us - autism advocates have been ringing this bell for some years. However, their pleas have been largely unheeded...Specifically, we will argue that employing ABA violates the principles of justice and nonmaleficence and, most critically, infringes on the autonomy of children and (when pushed aggressively) of parents as well."ABA lacks social validity

3. Flagship Journal of ABA was reviewed over 50 years (Pritchett et al 2020) and findings concluded that ABA is not used collaboratively, contributes to oppressive and commodified structures, lacks informed consent, addresses problems that were rarely initiated/voiced by community and there was little indication of improved lives of the "person at the centre".

4. United Nations Human Rights Special Rapporteurs (2015)

"In many countries, autistic persons lack access to services which would support, on an equal basis with others, their right to health, education, employment, and living in the community. When available, services are too often far from human rights friendly or evidence-based....

Autistic persons are particularly exposed to professional approaches and medical practices which are unacceptable from a human rights point of view. Such practices - justified many times as treatment or protection measures - violate their basic rights, undermine their dignity, and go against scientific evidence...

Autistics persons should be recognized as the main experts on autism and on their own needs, and funding should be allocated to peer-support projects run by and for autistic persons.."

5. How behaviourism fails when it comes to understanding behaviours

An autistic human rights campaigner shares her experience of behavioural analysis and support, highlighting how stressed autistic behaviours were inappropriately viewed and treated and led to long term restraint and seclusion.

In one of ten videos linked to the National Autistic Taskforce's Independent Guide to Quality Care for Autistic People we see another example of how behaviours were inappropriately viewed leading to restraint and seclusion.

6. Autonomously Autistic: Exposing the Locus of Autistic Pathology (2018)
Paper discussing how ABA goes against rights, such as autonomy and agency.

7. Distorting Psychology at the Expense of Joy (2018)
Human Rights violations against autistic people via ABA.

8. Scottish Human Rights Commission
Human Rights Based Approaches: "Everyone has the right to participate in decisions which affect them. Participation must be active, accessible and meaningful"
[PBS was developed and is being endorsed without meaningful say by disabled people. PBS is routinely used on disabled people without consent and without values that reflect those of the "person at the centre".]

9. The Misbehaviour of Behaviourists (Dawson 2004)
Extensive paper about "Ethical Challenges to the Autism-ABA Industry"

10. Review of 2020 ABA textbook (900 pages, known as the "white bible")
Concerns include omission of discussion of ethics, consent, human rights, risks/harms, and protecting autonomy and promotes harmful practices discussed such as ignoring a person in distress, putting children in aversive situations, removing favourite things for noncompliance.

11. PBS Values and quality of life - BiLD online training course 2020
These reflect those of typical society and those around the person, rather than the goals of those of the "person at the centre"

The PBS training on Values creates harmful mindsets, power imbalances and fuels ableist and "saviour" mentalities. Extracts from the BiLD PBS training course (prerequisite for its accredited courses):

PBS normative approach targets behaviours that look odd and devalues normal autistic behaviours, such as stimming or other ways of self regulation, often treating autonomic brain responses e.g. behaviours from fight/flight, trauma or dysregulation, as purposeful and learned.

Such stress responses can manifest in external challenging behaviour, or can be contained as the individual becomes passive and disassociates. A focus on unwanted external behaviour is flawed and goes against development of regulation, current understanding of autism, neuroscience and child development.

The Challenging Behaviour Foundation guidance on PBS reinforces the idea that behaviours are learned/purposeful. "in general, many cases of challenging behaviour appear to be effective ways for a person with learning disability to control what is going on around them. This may reflect their lack of more usual methods of control or making choices, such as communication skills or daily living skills."

The PBS Academy Competency Framework (2015) states the first step in PBS is to define a person by their external behaviours which is over simplistic and dehumanising:

"The PBS process begins with a systematic assessment of when, where, how and why an individual displays behaviour that challenges, a process known as functional assessment or functional analysis. The primary outcomes of this process are:

1. A clear description of the behaviours of concern (including classes or sequences of behaviour that occur together).

2. The identification of the events, times, and situations that predict when the behaviour will and will not occur across the person's full range of typical daily routines.

3. Identification of the consequences that maintain the behaviour (that is, the purposes or functions that the behaviour appears to serve for the person)

4. The development of one or more summary statements or hypotheses that describe specific behaviours, the situations in which it occurs, and the consequences that may maintain it.

5. The collection of direct observational data that support the summary statements that have been developed.

PBS is not supported by quality evidence

An investigation into Positive Behaviour Support and Quality of Life (2019)

Systematic review "Although the Challenging Behaviour Foundation (2019) attest to their being "strong evidence that PBS is effective in producing positive outcomes, such as increasing the person's skills and positive life opportunities", this was not substantiated for adult service users in this review. The main output of this review for service users, their families, clinicians, services and policymakers, is that there is a lack of scientific knowledge on the extent to which PBS is effective for adult service users. This is consistent with the evidence review undertaken by NICE (2015) who did not explicate PBS in clinical guidance due to the scarcity of evidence."

Clinical outcomes of staff training in PBS to reduce challenging behaviour in adults with intellectual disability (March 2018)

"Staff training in PBS, as applied in this study, did not reduce challenging behaviour. Further research should tackle implementation issues and endeavour to identify other interventions that can reduce challenging behaviour."

Process evaluation of a randomised controlled trial of PBS-based staff training for challenging behaviour in adults with intellectual disability (Aug 2019)

"Therapists found it difficult to undertake all the elements of the intervention in routine care. Implementing a workforce training strategy is important to better define the active components of PBS, and resource implications if the intervention is no better than usual care". Can PBS be done with fidelity?

Clinical and cost effectiveness of staff training in the delivery of PBS for adults with intellectual disabilities, autism and challenging behaviour (April 2020)

"Results suggest lack of clinical effectiveness for PBS delivered by specialist ID clinical teams. Further evidence is needed from larger trials, and development of improved interventions."

Pervasive failure to disclose Conflict of Interest in ABA Autism Literature (2021)
https://www.frontiersin.org/articles/10.3389/fpsyg.2021.676303/full

Addressing the wicked problem of behaviour in schools Armstrong (2019)

Review of PBS in schools in Australia, Canada, England, New Zealand and US concludes "Students with disabilities affecting their behavioural development or who have mental health difficulties (MH) frequently face disadvantage, suspension or exclusion as a result of the application of this model in practice. ... Evidence-based, initiatives designed to address this dilemma in the US since the late 1990s, using PBS (Positive Behaviour Support) and also SWPBS (School-Wide Positive Behaviour Support) are outlined but the conclusion is reached that these efforts do not appear to have been successful. Recommendations are made for progress in tackling this wicked problem and include: wholehearted rejection of the manage and discipline model by practitioners....Finally, this article advocates radical change in attitudes by teachers toward student conduct in schools and argues that educational practice should align with insights about human behaviour arising from research in developmental psychology."

US Dept of Defense 2020 Annual TRICARE Autism Report on ABA

This concluded (page 30) "there is no way to know if the relatively small change observed here is the result of ABA services, other services received, or if this simply a result of maturation.... This finding strongly suggests that the small changes noted are not related to ABA services"

Autistic People's Organisation A4A Ontario Summary ABA evidence 2020

The extent to which PBS is not supported is widespread

US National Council for Independent Living (2021) Resolution passed against all forms of ABA, considered to be abuse.

Critique of ABA and PBS: Labour Party Neurodiversity Manifesto Appendix (2018)

Autistic UK Does ABA therapy harm autistic people? (2018)

Autistic people should be listened to and autistic communities do not support ABA (2017)

Evidence that autistic people should be listened to and the extent to which autistic communities do not support ABA, including the Autistic Self Advocacy Network, the largest Autistic People's Organisation.

Therapist Neurodiversity Collective: organisation consisting of multidisciplinary therapists and educators:

Why the TNC does not support PBS
ABA goes against supporting neurodiversity
Why TNC do not support social skills training (with evidence)

"PBS, PBIS and Positive Reinforcement are all forms of ABA. Despite some industry changes in ABA and therapy models, ABA practices will always be based upon a foundation of compliance, coercion and behaviourist principles. It is impossible to practice ABA even gently or playfully, without attempting to control and manipulate a persons behaviour. The fundamental goal of ABA is compliance with the will of the person in position of authority. This is completely counter-intuitive to self advocacy, self-determination and upholding human rights and dignity".

Dr Damian Milton - ABA and The Autistic Community: Time to Listen

Webinar delivered in 2020 about the normative approaches of ABA PBS, nature of issues and alternatives.

New Jersey Autism Centre for Excellence

Has various resources and webinars discussing the issues of behaviourist approaches, how they are outdated and do not reflect current understanding of neuroscience and development, eg why positive reinforcement is not so positive, troubling questions about behaviourism

American Speech and Hearing Association article (2020)

Mentions harms of behavioural therapies and collaborative approaches with autistic people to support emotional regulation and energy levels.

Alliance Against Seclusion and Restraint (2019)

Hold panel discussions with other experts in neuroscience, child development and educational psychologists. Their 2019 paper on "The Problem with Behaviourism" sets out why it goes against current understanding and asks where is the evidence that it reduces restraint and seclusions?

Studio 3 Prof Andy McDonnell: The Recovering Behaviourist

Paper setting a journey from 1980s as an ABA user through the decades with lessons learned from supporting people with distress behaviours, including the problem of focusing on behaviours.

Polls of autistic people's views:

Bonello (2018) on ABA - "Generally speaking, I support ABA for autistic children?"

(n=3,431, agree 5%, disagree 52.5%, n/a or no answer 41.2%)

Memmott (2020) on PBS - "Should teams use PBS methods on autistic people?" (n=649, yes 7%, No 75%)

AutCollab international effort to ban autistic conversion therap/all forms of ABA

ABA in all its forms is considered autistic conversion therapy as it targets natural ways of being for not being typical or looking odd. This international collaboration includes a number of panel discussions about this.

Trauma informed care and intellectual disability 2021

Article in Learning Disability today raises issues of behaviourism

Physical and petition protest against the BiLD PBS International Conference 2021
https://www.change.org/p/hilton-worldwide-stop-pro-abuse-conference-at-doubletree-by-hilton-glasgow https://m.facebook.com/events/doubletree-by-hilton-glasgow-central/protest-the-bild-international-pbs-conference/553535232625187

Harms and Risks of behaviourist interventions

The National Autism Dividend report (2017)

An extensive review into autism interventions noted on page 93 "There are also concerns strongly expressed by some autistic people and their families and carers that some behavioural therapies (and this would include ABA and PBS) are unethical, trying to force people to adopt (or stop) certain behaviours, even when it causes considerable discomfort or even pain, and therefore can cause harm."

The psychological risks of behaviourist methods have not been looked at in ABA literature

Dawson & Fletcher Watson 2021 research paper, When Autism Researchers Disregards Harms, "Failures in addressing harms have proliferated across autism research...for reasons such as the embrace of low standard by journals, and the omnipresence of unchecked conflicts of interest. Disregard of harms has in turn wrongly been interpreted as evidence of no harms, with consequences rippling out to other areas (e.g. early detection and screening), distorting research and practice. Despite a large literature spanning decades, accumulated knowledge about potential or actual harms to autistics from interventions that may occupy many of their waking hours, for years, is negligible. Indeed, conflicts of interest entangled with low standards in research and practice would undermine future efforts to accurately capture harms via routinely collected data. Nothing justifies these multiple failures on the part of autism researchers.

We welcome the attention to harm. But this attention is as rare as it is terribly overdue. We are left with an influential literature lacking fair tests of the benefits versus harms of autism interventions that have been widely implemented for decades. Autism researchers should be deeply troubled by this comprehensive failure to apply fundamental standards. We must recognize, understand, take responsibility for, and reduce the unacceptable biases that have led to autistics being considered unharmable, such that anything can be done to them."

PBS focus on stress, trauma and regulation is inadequate

Functional assessments (avoidance, access to something, social attention, other (feels good) , Antecedents, Behaviours and Consequences (ABCs), documentation of immediate triggers etc are an oversimplification and reductionist approach to understanding autistic (and human) behaviour generally, going against what we understand about stress and neuroscience and what is needed for autistic learning and regulation.

Research showing clear links between role of the sensory environment and resulting anxiety and stress, especially for those with higher levels of autistic traits (behaviours).

This tweet about a PBS manual shows how the role of trauma (more common amongst autistic people) takes a back, rather than front seat:

April 2020 research paper looking at autism and trauma, concluded that autistic people are more likely to have PTSD from traumatic life events and noted few service providers consider this.

Autistic people are more likely to be victims of traumatic events, due to treatment by others in society. Targeting the victim for their behaviours is the wrong target.

Need to move beyond "trauma-informed" approaches to "trauma-focused" ( FULD 2018). Too many are applying behaviourist interventions before understanding mental health co-occuring conditions.

"Mounting evidence for stress and trauma as a risk factor for comorbidity and the worsening of core ASD symptoms may intimate a shift in the way clinical social workers and other clinical practitioners conceptualize and approach work with this population to include trauma-focused assessment strategies and clinical interventions".

Study suggesting behaviour therapies may lead to an increase in trauma/PTSD symptoms ( kupferstein 2018) and response to the ABA field who dismissed the study ( Chown et al 2019)

Using Functional Analysis (ABA) to treat Self-injurious behaviours is unethical and beyond scope (Scheldy 2019)

Masking/camouflaging costs to mental health

Behavioural interventions reward/reinforce individuals to act in ways that are considered culturally more appropriate, including how stress is manifested, repetitive and stereotypical behaviours, engaging in activities mainstream society values. There are significant costs to mental health from camouflaging/masking and not being accepted for natural ways of being:

Cassidy, Baron-Cohen et al 2018 research concluded "camouflaging and unmet support needs appear to be risk markers for suicidality unique to ASC"

2021 research paper on poor mental health outcomes and burnout from living in authentic lives, including links between masking and suicide

2021 Journal American Medical Association Article discussing problem of autistic individuals masking to conform with societal expectations, "....Quantitative and qualitative research studies show that such camouflaging is exhausting and is associated with poor mental health, including suicidal thoughts and behavior. This has important implications for many interventions" with a "risk of exacerbating a disconnect between the true self and performing self, potentially increasing anxiety and decreasing self-esteem."

ADR: Anti-Ableism 101 Facebook group (1,800 members)

A basics/beginner Facebook group set up in the last year to learn about the harms that ABA can cause clients, particularly autistics. This group educates about anti-ableism, pro-neurodiversity, autistic experiences and voices.

McGill & Robinson research 2018 into Experiences of Applied Behaviour Analysis - emerging themes :'removal of autistic self', 'increased vulnerability', 'missed empathic response' and 'autistic led alternatives', a clear antithesis between ABA practices and perceived wellbeing in comparison to experienced quality of life. "

Autistic Science Person - why ABA is harmful to autistic people.

Dr Beurkens podcast, US (2020)

"The serious problem with behavior management approaches". Interview wiith OT expert in neurologically supportive approaches. Discuss "how many approaches used for challenging behaviours are outdated, not supported by current research, and there are many adults on the autism spectrum and with related kinds of issues who have started to speak out about the trauma they experienced during these kinds of therapies when they were kids. Unfortunately, these types of approaches continue to be recommended in schools, in some therapy settings, and at home"

As set out in A (6) above, the values in PBS training are normative and create unhealthy mindsets.

A 2019 thesis review of ABA research showed the existence of oppression violence within ABA research articles reviewed in one month of the Journal of ABA, and that autistic people resisting ABA highlights agency and dignity.

Behaviour analysis links to gay conversion therapy

Disturbing behaviours: Ole Lovaas and the queer history of autism science (2018)

Treating autism as a problem the connection between gay conversion therapy and ABA (2018)

The main behind ex-gay conversion therapy started out trying to make autistic children "normal" (2021)

Building a person legal and clinical personhood for autistic and trans childrenin Ontario (2020)

LGBTQ+ conversion therapy and applied behavior analysis: A call to action (2021)

Societal changes and expression of concern (2020)

Autistic Conversion Therapy (2016)

How ABA methods go against autistic learning

The problem with PECS (ABA communication tool)

Hyperlexia: a systematic review, neurocognitive modeling and outcome (2017) - why many assumptions about autistic learning are not supported by current understanding.

Should we change methods and targets of early intervention in autism in favour of a strengths based education? (Mottron 2017) how ABA methods have been called into question in the last decade due to poor standards, and evolution of ethical and societal standards, illustrating various areas where assumptions ABA makes about autistic learning are not supported.

Perceptual learning in autism: overspecificity and possible remedies (Oct 2015) repetition of information ( a key feature of ABA) hinders ability to apply learning to new situations.

Learning in autism (Section 2.38.5) sets out history and incorrect assumption what lead behaviour analysts to believe ABA methods are a good way of learning for autistic people, inconsistent with more up to date research

Alfie Kohn - child development expert speaks out against the use of reinforcements ( punished by rewards) and behaviourism and autism.

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September 2021 Supplementary Evidence (download as PDF) PBS is a brand of ABA PBS does not support human rights PBS is not supported by quality evidence The extent to which PBS is not supported is widespread Harms and risks of behaviourist interventions PBS is a brand of ABA Positive Behaviour Support and Applied Behaviour Analysis...

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The Effects of Behavior-Based Models on Neurodevelopment and Learning with Alfie Kohn & Prof. Torres

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Developing a Top Quality Evidence-Base For Supporting Autistic People and Their Families

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Developing a Top Quality Evidence-Base For Supporting Autistic People and Their Families

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https://youtu.be/dtJTrQROBf4

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Developing a Top Quality Evidence-Base For Supporting Autistic People and Their Families

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https://youtu.be/-fxzfuvuek4

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Raising Awareness of the AIC - How Branding, Mktg, and Cap Invstmt Turned Autism into Big Business

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Autism Intervention Research Needs Ethics Overhaul: Conflicts of Interest and Adverse Event Reports

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Prof. John L Taylor - Newcastle UniversityTizard seminar: Transforming Care, Mental Health Act reform and Positive Behaviour Support(Learning Disability and Autism)PBS - there is no evidence to support

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Prof. John L Taylor - Newcastle UniversityTizard seminar: Transforming Care, Mental Health Act reform and Positive Behaviour Support(Learning Disability and Autism)PBS - there is no evidence to support

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https://www.youtube.com/clip/UgkxuHoKi6IZk71Xr7y-DdOc3y01fkOcghsl

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✂️ PBS - is not supported by any evidence of effectiveness

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58 seconds · Clipped by IR · Original video "Tizard seminar: Transforming Care, Mental Health Act reform and Positive Behaviour Support" by Tizard Centre Uni...

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Commissioning of Support Services should involve the community the "support" will affect. It must also benefit and be cost-effective - PBS is not evidence-based - the harm compliance-based approaches cause is however well documented researched and proven.

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Commissioning of Support Services should involve the community the "support" will affect. It must also benefit and be cost-effective - PBS is not evidence-based - the harm compliance-based approaches cause is however well documented researched and proven.

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The Inside of Autism

To find out about The Inside of Autism please visit this page:
The Inside of Autism
The dates for this round of live training are 04 November to 16 December 2022.

Each session is at 7pm GMT (UK) for approximately 2 hours.

You have access to recordings of the live training sessions until 06 January 2023.

PRICING PLANS: We have two options for pricing; $50 for the general public and $125 for professionals. However, this isn't set in stone and professionals can pay $50 and members of the public and pay $125 (basically, you can choose how much you would like to pay 💗).

There is more information under each pricing option. Please scroll down to under the 'What Is Covered' section. ⬇⬇⬇⬇⬇

Show All Lectures

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The Inside of Autism To find out about The Inside of Autism please visit this page: The Inside of Autism The dates for this round of live training are 04 November to 16 December 2022. Each session is at 7pm GMT (UK) for approximately 2 hours.

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Milton, Damian (2020) Applied Behavioural Analysis and the autistic community: time to listen. In: Are We Asking the Right Questions About Behaviour? Studio3 Web Conference, 21 Oct 2020, Online. (Unpublished) ( KAR id:83599)

Abstract

This presentation gives an overview of criticisms made of Applied Behavioural Analysis (ABA) and Positive Behavioural Support (PBS) and its implementation with autistic people and discusses the ongoing controversy and deepening polarisation of views regarding these theories and practices.

Depositors only (login required):

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Applied Behavioural Analysis and the autistic community: time to listen

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Milton, Damian (2020) Applied Behavioural Analysis and the autistic community: time to listen. In: Are We Asking the Right Questions About Behaviour? Studio3 Web Conference, 21 Oct 2020, Online.

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Why not Positive Behavior Support (PBS), Positive Behavioral Interventions and Supports (PBIS), or Positive Reinforcement?

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Positive Behavior Supports are a form of ABA. Compliance-based education and therapy are harmful. There are better ways.

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Kristy Forbes - Autism & Neurodiversity Support Specialist

Jay Jay Mudridge - Autistic Advocate and ABA Survivor

Gillian Kearns - Neurodivergency Rights Activist

Katie Kerley - Occupational Therapist

Siobhan Ui Dhalaigh - Gaelscoil Teacher

Cole Sorensen - AAC User, Public Speaker and Writer

Evaleen Whelton - Founder AUsome Training and Autistic Advocate

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Alternatives to ABA | AUsome | Neurodiversity Affirming

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Kristy Forbes - Autism & Neurodiversity Support Specialist Jay Jay Mudridge - Autistic Advocate and ABA Survivor Gillian Kearns - Neurodivergency Rights Activist Katie Kerley - Occupational Therapist Siobhan Ui Dhalaigh - Gaelscoil Teacher Cole Sorensen - AAC User, Public Speaker and Writer Evaleen Whelton - Founder AUsome Training and Autistic Advocate

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Kristy Forbes - Autism & Neurodiversity Support Specialist

Jay Jay Mudridge - Autistic Advocate and ABA Survivor

Gillian Kearns - Neurodivergency Rights Activist

Katie Kerley - Occupational Therapist

Siobhan Ui Dhalaigh - Gaelscoil Teacher

Cole Sorensen - AAC User, Public Speaker and Writer

Evaleen Whelton - Founder AUsome Training and Autistic Advocate

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Alternatives to ABA | AUsome | Neurodiversity Affirming

# data[].attributes.attachment_link.description
Kristy Forbes - Autism & Neurodiversity Support Specialist Jay Jay Mudridge - Autistic Advocate and ABA Survivor Gillian Kearns - Neurodivergency Rights Activist Katie Kerley - Occupational Therapist Siobhan Ui Dhalaigh - Gaelscoil Teacher Cole Sorensen - AAC User, Public Speaker and Writer Evaleen Whelton - Founder AUsome Training and Autistic Advocate

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Why not Positive Behavior Support (PBS), Positive Behavioral Interventions and Supports (PBIS), or Positive Reinforcement?

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Positive Behavior Supports are a form of ABA. Compliance-based education and therapy are harmful. There are better ways.

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ISA House, 5-7 Great
Chesterford Court, Great
Chesterford, Essex, CB10 1PF

T: 01799 523619
E: [email protected]

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Links to the latest legislation and policy relating to Equality, Diversity and Inclusion.

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Autistic Perspectives on the Future of Clinical Autism Research

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Autistic Perspectives on the Future of Clinical Autism Research

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The Lancet Commission on the Future of Care and Clinical Research in Autism recently published their recommendations for what should be done in the next 5 years to address the current needs of autistic individuals and families.1 Although the Commission includes many prominent clinicians and researchers from around the world, as well as some autistic advocates and parents of autistic people, there have been widespread expressions of dissatisfaction among autistic people and communities regarding these recommendations.

We, the Global Autistic Task Force on Autism Research are a group of autistic professionals and representatives of organizations run by and for autistic people. We are autistic clinicians, therapists, educators and researchers, parents, and family members of autistic people of all ages and with all types of support needs, as well as individuals with high support needs. Among us are also autistic people of color, autistic people from the Global South and Asia, autistic women, and autistic people belonging to gender minorities.

Despite aiming at bringing together different stakeholders, representation within the Lancet Commission was limited in these respects. We hope to bring more voices to the discourse. We previously wrote an open letter to the Commission to draw attention to our main concerns.2 In this editorial, we offer a more detailed discussion of the Commission's report, as well as our own recommendations for future directions in autism research and care.

The Commission gives detailed recommendations on the types of studies and the research themes they consider most important for funding, highlighting randomized controlled trials for short-term interventions, including medication and behavioral trials, as a priority. The Commission recommends more research on the usability of diagnostic methods and practices in different countries, and it considers it necessary to bring about system change, by which they mean making local and national systems more effective at delivering diagnostic services and interventions.

In addition, the Commission proposes a classification of “profound autism” be adopted as an administrative term to apply to autistic children and adults with high support needs, for example, those with a co-occurring intellectual disability or limited ability to communicate by using spoken language.

The Commission endorses research on genetics, biomarkers, and the development of medications to treat autism as well as co-occurring conditions, but it stresses the importance of investing resources in research focusing on practical clinical approaches, strategies, and treatments that can be implemented immediately to yield faster results. To implement the various clinical approaches effectively, the Commission proposes a “stepped care and personalized health model for interventions in autism.”

The proposed model starts with identifying the relevant diagnoses or conditions that require services, prioritizing needs, and defining the goals of treatments. The model also involves considering individual and family factors that may affect treatment success, as well as the accessibility and cost of the various interventions. These interventions are described as focusing on “building skills that are absent or diminished,” such as neurotypical social skills, as well as “reducing behaviors or feelings that have negative effects,” such as temper tantrums, aggression, depressive feelings, irritability, or hyperactivity.

Also, the Commission highlights as one of their key messages that “valuing autism and neurodiversity benefits society as a whole,” and it argues that neurodiversity, along with other factors, is “important for an understanding of any autistic individual and of the differences between individuals who have this diagnosis.”

We believe that the report falls short of truly including autistic perspectives. We focus on several key concerns: (1) We feel the report inadequately incorporates the advocacy and scholarship of autistic people and misunderstands the neurodiversity paradigm; (2) we consider the functional classification of “profound autism” to be misleading and counterproductive; and (3) we point out that the Commission's recommendations are in certain respects incomplete and, therefore, risk misrepresenting the necessary priorities for the next 5 years.

We close with a call to action, based on recent research on participatory approaches, in which we propose to set up true collaborative efforts in the spirit of the Commission's proposals, including our autistic perspective from the outset rather than as a mere output quality check.

Limited Consideration of the Advocacy and Scholarship of Autistic People

We find it encouraging that the Lancet Commission mentions the importance of collaborative participation when discussing the future of autism research, and we look forward to being increasingly included as collaborators.

We also find it positive that the Lancet Commission recognizes the need for systemic change and participatory research with all stakeholders, as well as the need for quality standards in autism research with randomized trials. Similarly, it is positive that the report discusses the urgent needs of autistic adults, although briefly, and that there were some autistic members in the Commission.

Nevertheless, it seems that as autistic adults and producers of knowledge on autism, the vast majority of autistic people in general, as well as autistic researchers, have remained invisible. For example, key studies and reports mapping autistic people's priorities regarding autism research have not been cited.3–8 These provide some broader context: Most autistic people's primary wishes for the next 5 years would not concern clinical interventions but matters of law, ethics, policy, and how these translate into support practices and realization of human rights.3

More than three decades of individual and collective advocacy, scholarship, and development of theory and praxis by autistic people were covered by the Commission under the heading of parent and family advocacy, in three words: “increasingly, self-advocacy.” Autistic people who offer their expertise and experience-based knowledge appear to be generalized as “more able” despite our widely varying support needs, and despite many of our organizations focusing partly or primarily on the needs of those who are less able to advocate for themselves.9–11 Similarly, we appear to be grouped under the title of the neurodiversity movement, despite our different approaches and varying levels of emphasis on the concept, and despite the history of the autistic rights movement preceding it.12,13

Regarding the neurodiversity paradigm, we wish to point out that considering something as natural variation does not equal claiming that it “does not need intervention.” It means preferring interventions that target systems and environments, supporting individuals to thrive as they are, instead of trying to bring them closer to the “perceived norm.”14–19 We agree with the Commission's observation that “not all autistic people and stakeholders identify with the neurodiversity movement.” We would welcome research on the distribution of people identifying with the neurodiversity movement or paradigm versus identifying with clinical and other portrayals of autism.

We also wish to point out that researchers embracing the neurodiversity paradigm do not comprise a new phenomenon.20 It has been encouraging to see the increasing number of established autism researchers re-considering the traditional framing of autism and recommending this approach to colleagues.21,22

On a fundamental level, we need to be seen from the dual perspectives of minority and disability. We find it positive that the Lancet Commission suggests using the International Classification of Functioning, Disability and Health in research. However, the authors consistently refer to autism as a “disorder” rather than a “disability,” while equally consistently using the expressions “intellectual disability” and “learning disability.” This terminology appears to signal that autism itself belongs to the category of illness or disease, rather than neurodivergence or disability, both of which would allow for the inclusion of positive characteristics as part of the core definition of autism.23

The Term “Profound Autism”

The Commission proposes the label of “profound autism” to be adopted as a term to apply to autistic children and adults who have or are likely to have particular support needs, specifically, those “requiring 24 hours access to an adult who can care for them if concerns arise, being unable to be left completely alone in a residence, and not being able to take care of basic daily adaptive needs.” The commission notes that in most cases, these needs will be associated with a substantial intellectual disability, very limited language, or both, effectively creating a label to classify the most vulnerable autistic individuals. The Commission further states that the term “profound autism” was chosen as the term “low-functioning” is disliked by many.

We do not agree with the proposal to adopt “profound autism” as an administrative term. For more than 30 years, autistic people have resisted functioning labels as misleading and offensive.24,25 “Profound autism” would be a step back, even as “low-functioning” is falling out of use.

The term would not be sufficient to steer service provision or research efforts, just as functioning levels never were. It provides no useful information to others who may need to interact with the autistic person. High support needs are associated with co-occurring characteristics and health issues in many combinations, and the level of support needs often fluctuates. It is clearer to use brief descriptions such as “autistic person with intellectual disability,” “autistic person with minimal language,” or “autistic person with extreme anxiety and co-occurring physical condition.” Expressions such as “autistic person with high support needs” or “autistic person requiring 24-hour care” are also useful.

The term would also give the false impression of intellectual disability and impaired language development being core characteristics of autism. An autistic person with these characteristics would somehow be “more autistic,” or closer to the deep end of an imaginary linear spectrum, than an autistic person without them. “Profoundly autistic” would misleadingly refer to people who actually have profound impairments that are not autism specific, while not necessarily having any particularly extreme autistic characteristics.

Participatory Research

Participatory research gets two brief mentions in the Commission report. The Commission states that research should in all contexts embrace a participatory approach that includes autistic people, alongside other stakeholder groups. This stated importance is not reflected in the rest of the report, as no definitions of good examples of participatory research are offered, and only one citation is provided. The only examples of participatory roles that the Commission suggests for autistic people in the context of clinical research are “consulting on the details of clinical trials and outcome measures.”

The participatory approach is a crucial element in all future autism research. A body of literature exists on its principles, practices, and significance.26–33 Anything that will truly help needs to be co-designed, developed, and evaluated with the involvement of autistic people. It has positive implications for the wider research agenda, in particular when established non-autistic autism researchers collaborate meaningfully with autistic scholars. We need approaches that value and center autistic voices, experiences, and expertise.

As participants, autistic people can correct misperceptions regarding concepts developed by autistic communities, researchers, and scholars, including neurodiversity and the neurodiversity paradigm,34–36 the double empathy problem,37 autistic inertia,38 monotropism,39 hyperfocus,40 and autistic space.41 We can offer insights on the therapeutic and empowerment value of self-help activities and the positive aspects of engaging in intense interests, as well as introducing emerging ideas such as sensory trauma,42 the co-creation of extended autistic families, and community-based mentoring.43 These concepts have implications for clinical research, including early intervention,44 and can lead research to new, more effective directions.

Research Topics and Approaches

The Lancet Commission highlights randomized controlled trials for short-term interventions, including medication and behavioral interventions, as a priority in clinical autism research. The Commission emphasizes the need for trials to test the relative efficacy of different types, intensities, and combinations of interventions, as well as assessing the generalization of particular interventions and moderators of response and outcome.

Although the Commission states that the inclusion of stakeholders in the development of trial designs and outcome measures is vital, we do not believe that the Commission's recommendations regarding clinical trials adequately consider the needs and well-being of autistic people. As such, we do not believe that the Lancet Commission's recommendations can lead to improvements in the lives of autistic people, or the lives of our autistic children, within the next 5 years.

Instead, we urge focusing more resources on causes of mortality, improving our access to health care45–49 and mental health support,50–53 and large-scale monitoring of the effects of better access. This should include the impact on the detection and treatment of co-occurring conditions. We find it particularly surprising that the mortality studies published over the past few years received very little attention in recommendations for clinical research.54–58

We need clinical research to tackle the problem of harmful pseudoscientific treatments, mapping their use and effects on mental and physical health, as well as improving awareness among clinicians and carers.59

We need more research on assisted and augmented communication and supported decision making in the context of clinical work and care. To autistic people with limited communication, they are crucial to accessing health care and the appropriate delivery of medical and care services. Advocacy organizations often appear to be needed to ensure the right to use them, when this should be part of the work of clinical and care staff.60,61

We need more research on how stressful environments, being misperceived by others, lack of appropriate social and disability services, lack of reasonable accommodations, stigma, discrimination, and bullying affect the health of autistic people, contributing to anxiety and depression, and how such effects can be mitigated.62–66 A counseling methodology for autistic and other neurodivergent people needs to be developed and tested.

We also urgently need research on large-scale, affordable, and accessible screening and diagnosis for all age groups, in all parts of the world, especially in low-income and middle-income countries (LMICs).67,68 Diagnostic services must be seen as a basic right for all autistic people, not something that clinicians grant at their discretion or only when the diagnosis can lead to the provision of interventions. Diagnosis helps both children and adults to develop identity, self-knowledge, and personal strategies, and to start engaging in peer support, self-advocacy, and collective advocacy. These can be crucial to well-being, quality of life, and realization of basic rights, especially when very little else is available.69

The Commission has recognized the importance of research in adolescents and adults. However, we find that the recommendations for clinical research fall short, offering no concrete suggestions for topics or types of research. Repeating that something is urgently needed does not provide sufficient guidance.

The social70 and human rights71 models of disability should be understood and applied in the context of clinical work, leading to research and practice models that target systems, not just us as individuals. The existence of interventions with the goal of “optimizing person-environment fit” has been recognized by the Commission, which is a promising first step, but again this is not linked to concrete recommendations. Studies focusing on the Double Empathy Problem37 and unconscious negative perceptions of autistic people16,63 provide both theoretical frameworks and examples of practical interventions.16,17,44

Some aspects of the Treatment and Education of Autistic and related Communications Handicapped Children (TEACCH) programme, covered by the Commission in two sentences, might also offer starting points as a decades-old approach focused on adjusting environments.72 Educational and employment interventions need to be developed that promote positive uses of autistic people's intense interests and capacity for passionate focus, seeing the potential at the system level. They should not be dismissed as signs of “restricted” thinking or limited to being used in teaching social interaction as happens in the Program for the Education and Enrichment of Relationship Skills (PEERS), which the commission consistently recommends.1

Studying system change may not be amenable to controlled trials or commodification of intervention services. This does not diminish its significance. We need clinical research to work in collaboration with other fields of autism research, becoming part of a fundamental cultural shift in approaching autism, instead of falling outside it and operating in isolation.

Addressing Harmful Research and Treatments

The Lancet Commission discusses the problem of pseudo-treatments being promoted in popular literature and on the Internet, using the term “non-evidence-based treatments,” and stressing the responsibility of clinicians to be informed on which treatments are evidence-based, to be able to guide and advise caregivers.

However, we feel that some important aspects of this topic did not receive enough attention. Autistic children, adolescents, and adults with limited ability to advocate for themselves need to be actively protected from malpractice.59

Early autism research often objectified autistic people, and in many cases caused immense harm. Unfortunately, this can still happen. Historically, autistic children and dependent adults who are unable to give informed consent have been enrolled in experiments that may not have been allowed on non-autistic people, based on weak, far-fetched hypotheses. This has fed the creation of new pseudo-treatments. Research that focuses on pseudo-cures decenters the voices of autistic people regarding our actual needs and priorities.

We wish to draw attention to the fact that many pseudo-treatments have been initially trialed at universities and other research institutions, or promoted by them, including “packing,”73,74 holding therapy,75 secretin,76 hyperbaric oxygen,77 fecal transplants,78,79 oxytocin,80 and injections of stem cells,81 to name only a few. Clinical trials can be driven by the promise of commercializing a new “solution,” and by negative bias and disdain toward autistic people. It is necessary to recognize that some structures and practices of the academic world allow or even support the development of pseudo-treatments, which seek a thin veil of apparent academic credibility to attract followers and funding.

Autistic people's organizations have attempted to draw attention to the fact that defining the behavioral characteristics listed in diagnostic criteria as “core,” and trying to develop biological treatments with behavior as the primary target and means of measuring success, is both unwanted by many autistic people and likely destined to fail; similar behavior does not equal similar biology.82 The inherent fallacy in this approach is likely to contribute to continuous generation of pseudo-treatments. We urge researchers to focus the development of medications on co-occurring health problems that autistic people identify as distressing, and to target clearly identifiable biological factors instead of behaviors, with the aim of improving autistic people's quality of life and appreciating neurodiversity in this context as well as others. We predict that for many of us, better health would automatically lead to some positive changes in cognition and behavior as well as quality of life and well-being.

Behavioral Concepts and Interventions

We are particularly concerned about the dominant role of behavioral interventions, concepts, and interpretations of autism that is evident throughout the Commission's text. For example, the word “behavior” appears in the Commission's publication 161 times; in contrast, the word “cognitive” only appears 32 times, “quality of life” 12 times, “sensory” 9 times, and “wellbeing” only 4 times. The Commission endorses the use of behavioral interventions to target autistic behavioral and social communication differences and underlines conducting randomized controlled trials for short-term interventions, including behavioral trials, as a priority.

Autistic-led organizations have engaged in widespread criticism, activism, and campaigning focusing on behavioral approaches, including recent appeals to the UN Committee on the Rights of People with Disabilities.83 We see this especially in countries where the methods have been used extensively.

Changing behavior, as such, should not be the main goal of clinical research or treatment for autistic people of any age. Appearing autistic or acting in typically autistic ways should not be considered an illness. Clinicians need to be aware of the potential mental health risks of “camouflaging” and avoid encouraging or manipulating autistic people to engage in it, even through naturalistic or play-based methods.84,85 Keeping in mind health and well-being as the goals of clinical work, and the fundamental principle of beneficence, research should explore the long-term effects of behavioral interventions on autistic adults who have been subjected to them, as there have been reports of adverse effects.

The lack of an evidence base for older forms of Applied Behavior Analysis (ABA) has been mentioned by the Lancet Commission. However, there are other concerns that need to be addressed. In the past, unethical ABA practices included physical abuse and using the method in gay conversion therapy. Those who applied such practices included key developers of the methodology, such as Dr O. Ivaar Lovaas.86,87 This history needs to be openly admitted and the practices clearly renounced. There are other continuing ethical concerns,88 as well as issues with the evidence base of behavioral approaches more generally.

For example, Cochrane Review and meta-analysis of early-intervention ABA (early intensive behavioral intervention) found the overall quality of evidence low or very low.89 Seventy percent of ABA research has been reported to involve conflicts of interest, with less than 6% of the researchers declaring the conflicts.90 A recent US Department of Defence report on their Autism Care Demonstration program, which involves 47,000 certified ABA professionals and provides services to nearly 16,000 autistic people, mostly children and adolescents, expressed serious concerns about the lack of results from their ABA provision.91

Because of the emphasis on behavioral interventions, the Commission also appears to have ignored a number of more recently developed, promising possibilities.15–19,44,92,93 Researchers need to hear the many families that are seeking approaches that are more in alignment with the neurodiversity paradigm, and which are more oriented to the long-term well-being of autistic children than to their compliance with neurotypical behavioral norms.

In the light of the what has been stated earlier, elevating behavioral approaches above other therapeutic, habilitative, and educational methodologies to the status of medical treatments, and promoting them as treatments in LMICs, is considered by many autistic people a mistake of massive proportions.

Call to Action

To illustrate our ongoing work, we wish to name a few examples that clinical researchers might want to be aware of, and that could function as starting points for further discourse.

In 2011, the Academic Autism Spectrum Partnership in Research and Education (AASPIRE) described a model for using Community Based Participatory Research (CBPR) to partner with autistic people, based on lessons from the first 5 years of their research collaboration.27 In 2017, a Starter Pack for Participatory Autism Research 94 was published by the participatory Research Collective in the United Kingdom, followed in 2019 by a German Checklist for Autism Friendly Research.31

Also in 2019, the National Autistic Taskforce published An Independent Guide to Quality Care for Autistic People, describing quality provision for those with high support needs95; a Dutch autistic-led project published a report on Onderzoeksagenda Autisme, the most detailed study available on the research priorities of autistic people and other stakeholders8; and AASPIRE published “The AASPIRE practice-based guidelines for the inclusion of autistic adults in Research as Co-Researchers and Study Participants.” In 2021, The European Council of Autistic People presented preliminary results of a survey mapping the research priorities of autistic people in 12 languages.96 This year (2022), the Autistic Self Advocacy Network released a report titled “For whose benefit? Evidence, ethics, and effectiveness of autism interventions,” creating a template for a core set of underlying ethical principles for autism-related services.97

Although many ethical issues and questions remain unaddressed,98 it is encouraging to see an attempt at considering such ethical issues in clinical autism research and a call for “constructive collaborations” with autistic people and the wider autism community.99 However, although this is a welcome development, at times such collaborations have appeared merely performative.

We invite researchers and clinicians to join the critical conversation about ethics in autism research and services, and to actively include the voices of diverse autistic individuals and communities in their work. We wish to draw attention to power imbalances and lack of accessibility in such discourse. We lack platforms and channels to reach the research and clinical communities effectively. Current common practice that exacerbates the power imbalance is inviting individual autistic people to take participatory roles in research projects, representing their own “lived experience” only; in these roles, they are isolated, engaging with powerful organizations as individuals, often with very limited personal resources.

We call for the creation of shared platforms for continuing discourse on autism research at the global level, engaging autistic individuals as well as the organizations we have formed to advocate for our rights collectively.

Ways Forward

We came together as an ad hoc committee to respond to the Lancet Commission. Although time pressures prevented us from extensive surveying of autistic stakeholders, our collective history of engagement in autistic communities and discourses allows us to state with some confidence that we represent the views and interests of a significant proportion of autistic people. We are aware of the limitations of the process we have engaged in, but we suggest that learnings from it could be used and expanded upon.

We hope to move toward a more permanent and systematically developed global body of autistic people, reaching larger numbers of autistic communities to establish a global pool of NGO representatives, community leaders, researchers, and scholars interested in engaging in autism research and related public discourse. This would allow widespread implementation of previous recommendations of involving community leaders as well as individuals representing the wider autistic community, equalizing some of the power imbalance.27,28 It would introduce the possibility of involving autistic people who are not interchangeable even when they disagree or criticize, being mandated and supported by their autistic and academic communities.

To break existing imbalances, it is also imperative to differentiate key stakeholders. In the case of autism research, stakeholders such as parents, caregivers, and clinicians are driving the research agenda. For decades, researchers have suggested therapies or interventions, often dismissing the views of those who have received them. Acknowledging autistic people as the key stakeholders is an essential and fundamental step forward. It could allow experience to be absorbed and transformed into knowledge to redefine the research strategy regarding autism. The research strategy itself should be community-oriented instead of disorder-oriented. An inclusive research strategy is a crucial component for the long-term positive results benefiting all stakeholders.

More autistic researchers are needed worldwide to bring more global attention to their viewpoints on autism. Autistic people worldwide should be encouraged to enter universities and undergraduate schools to discover their strengths in research. However, some universities can be reluctant to accept autistic students, or they may not have the expertise or resources to support them. Therefore, we need international grant programs to support higher education of autistic people.

Many methods and principles that can allow us to move forward already exist in the literature on participatory research. They have been successfully used in several countries, allowing us to recognize universal principles. For example, the “Toujishakenkyu” (Participatory study) method used by Japanese researchers could serve as one starting point for researchers everywhere to learn about autistic people's issues and insights.100

To give another example, collaborative consultation, if implemented with care, could be a positive tool. It has been suggested that participatory research, nevertheless, is still the exception rather than the standard, and that much of the participatory research that does take place is merely tokenistic.101

Thus, the most crucial question concerning participatory research at this point is not how to gain more knowledge about it, but how to consistently apply what we already know.

To increase accountability in autism research in general, it is necessary to create clear regulations on ethical engagement with the wider autistic community, using existing guidelines as the basis and aiming for global consensus. Increasing transparency in autism research, tackling conflicts of interest, and increasing autistic inclusion is crucial in developing accountability and trust. Autistic researchers, advocates, and community partners must be included at all levels of autism research, particularly in leadership.

Autistic people must be involved in setting the research agenda and have decision-making power in autism research, and not be merely tokenized. This inclusion is necessary to ensure that the research is aligned with the needs of autistic people. We must continue to establish and support groups and institutions that are aligned with the neurodiversity paradigm and have sufficient autistic representation. These groups must be consistently included in the discussion and decision making in autism research.

The power imbalance that currently allows interconnected non-autistic groups and individual researchers to control which research gets funded, how that research is conducted, and how research findings are reported must be challenged and rebuilt to a more equitable, inclusive system that centers on autistic people's needs and well-being.

Acknowledgment

The authors wish to thank Dr Sue Fletcher-Watson for her helpful comments during the preparation of the article.

Authorship Confirmation Statement

All authors have worked as an ad hoc committee where all participants have contributed by offering ideas, writing brief paragraphs or individual sentences, suggesting references, proofreading, and assessing content. H.P., J.B., and w.-h.Y. have worked as an editing team within the committee.

Author Disclosure Statement

H.P. is an employee of Suomen Autismikirjon Yhdistys, a non-profit NGO that promotes the empowerment of autistic people. M.D., S.C.K.S., N.C., and M.J. are all part of a John and Lorna Wing Foundation funded research project based at London South Bank University, exploring National Health Service (UK) General Practitioners' knowledge, attitudes, and practices regarding annual health checks for autistic adults and autism training. M.D. is a member of AIMS-2-Trials Autism Representatives Steering Committee. S.M. is a member of the Royal College of Psychiatrists' Autism Group (promoting the importance of autism to the psychiatric profession) and Disabilities Equality Action Plan Working Group. Other authors declared no conflicting interests.

Funding Information

No funding was received for this article.

References

1. Lord C, Charman T, Havdahl A, et al. The Lancet Commission on the future of care and clinical research in autism. Lancet. 2022;399(10321):271–334. Crossref, Medline, Google Scholar

2. The Global Autistic Task Force on Autism Research. An open letter to the Lancet Commission on the future of care and clinical research in autism. https://eucap.eu/2022/02/14/open-letter-to-lancet-commission/ Accessed February 14, 2022. Google Scholar

3. Roche L, Adams D, Clark M. Research priorities of the autism community: A systematic review of key stakeholder perspectives. Autism. 2021;25(2):336–348. Crossref, Medline, Google Scholar

4. Pellicano E, Dinsmore A, Charman T. What should autism research focus upon? Community views and priorities from the United Kingdom. Autism. 2014;18(7):756–770. Crossref, Medline, Google Scholar

5. Australian Autism Research Council. Research report on focus groups to identify research questions for community informed priority areas. https://www.autismcrc.com.au/aarc Accessed February 2, 2022. Google Scholar

6. Australian Autism Research Council. Draft Research Priorities for Consultation 2019. https://www.autismcrc.com.au/aar Accessed February 2, 2022. Google Scholar

7. Pellicano L, Dinsmore A, Charman T. A Future Made Together: Shaping Autism Research in the UK. United Kingdom: Centre for Research in Autism and Education (CRAE), Institute of Education, University of London. Google Scholar

8. Van den Bosch K, Weve D. Report of the Autism Research Agenda: Mapping research needs of three interest groups the field of autism: adults, parents and legal representatives [in Dutch]. Project Onderzoeksagenda Autisme, the Netherlands, Nijmegen, The Hague. https://onderzoeksagenda-autisme.nl/rapport.pdf Accessed January 27, 2022. Google Scholar

9. The National Autistic Taskforce. The National Autistic Taskforce. https://nationalautistictaskforce.org.uk/ Accessed February 1, 2022. Google Scholar

10. Adventor. Naše cíle [Our goals]. https://www.adventor.org/o-nas/nase-cile Accessed February 1, 2022. Google Scholar

11. A4A Ontario. Guides & Policy Papers. https://a4aontario.com/policy-statements-reports/ Accessed February 1, 2022. Google Scholar

12. Sinclair J. Autism Network International: The development of a community and its culture. https://www.autismnetworkinternational.org/History_of_ANI.html Accessed January 27, 2022. Google Scholar

13. Dekker M. From exclusion to acceptance: Independent living on the autistic spectrum. In: Kapp S, ed. Autistic Community and the Neurodiversity Movement: Stories from the Frontline. Republic of Singapore, Singapore: Springer Nature Singapore, 2020;41–49. Google Scholar

14. Walker N, Raymaker DM. Toward a neuroqueer future: An interview with Nick Walker. Autism Adulthood. 2020;3:5–10. Link, Google Scholar

15. Fletcher-Watson S. Merging psychological theory with a neurodiversity framework for better autism interventions. The 31st European Academy of Childhood Disability (EACD) Conference. May 23–25, 2019. Paris , France. https://edu.eacd.org/node/697 Accessed January 27, 2022. Google Scholar

16. Chapple M, Davis P, Billington J, Myrick JA, Ruddock C, Corcoran R. Overcoming the double empathy problem within pairs of autistic and non-autistic adults through the contemplation of serious literature. Front Psychol. 2021;12:708375. Crossref, Medline, Google Scholar

17. Jones DR, DeBrabander KM, Sasson NJ. Effects of autism acceptance training on explicit and implicit biases toward autism. Autism. 2021;25(5):1246–1261. Crossref, Medline, Google Scholar

18. Holyfield C, Drager KD, Kremkow JM, Light J. Systematic review of AAC intervention research for adolescents and adults with autism spectrum disorder. Augment Altern Commun. 2017;33(4):201–212. Crossref, Medline, Google Scholar

19. Davis R, den Houting J, Nordahl-Hansen A, Fletcher-Watson S. Helping autistic children. OSF preprints. 2021. https://osf.io/zrfyp/download Accessed February 1, 2022. Google Scholar

20. Nicolaidis C. What can physicians learn from the neurodiversity movement?. Virt Mentor. 2012;14(6):503–510. Crossref, Medline, Google Scholar

21. Sonuga-Barke E, Thapar A. The neurodiversity concept: Is it helpful for clinicians and scientists? Lancet Psychiatry. 2021;8:559–561. Crossref, Medline, Google Scholar

22. Pellicano E, den Houting J. Annual Research Review: Shifting from ‘normal science’ to neurodiversity in autism science. J Child Psychol Psychiatry. 2022;63(4):381–396. Crossref, Medline, Google Scholar

23. Bervoets J, Hens K. Going beyond the Catch-22 of Autism Diagnosis and Research. The Moral Implications of (Not) Asking “What Is Autism?”. Front Psychol. 2020;11:529193. Google Scholar

24. Williams K. The fallacy of functioning labels. The National Centre for Mental Health. 2019. https://www.ncmh.info/2019/04/04/fallacy-functioning-labels/ Accessed February 1, 2022. Google Scholar

25. Bottema-Beutel K, Kapp SK, Lester JN, Sasson N, Hand BN. Avoiding ableist language: Suggestions for autism researchers. Autism Adulthood. 2021;3(1):18–21. Link, Google Scholar

26. Gillespie-Lynch K, Brooks PJ, Someki F, et al. Changing college students' conceptions of autism: An online training to increase knowledge and decrease stigma. J Autism Dev Disord. 2015;45(8):2553–2566. Crossref, Medline, Google Scholar

27. Nicolaidis C, Raymaker D, McDonald K, et al. Collaboration strategies in non-traditional CBPR partnerships: Lessons from an academic-community partnership with autistic self-advocates. Prog Community Health Partnersh. 2011;5(2):143–150. Crossref, Medline, Google Scholar

28. Nicolaidis C, Raymaker D, Kapp SK, et al. AASPIRE Practice-Based Guidelines for the Inclusion of autistic adults in research as co-researchers and study participants. Autism. 2019;23(8):2007–2019. Crossref, Medline, Google Scholar

29. Chown N, Robinson J, Beardon L, et al. Improving research about us, with us: A draft framework for inclusive autism research. Disabil Soc. 2017;32(5):1–15. Crossref, Google Scholar

30. Fletcher-Watson S, Adams J, Brook K, et al. Making the future together: Shaping autism research through meaningful participation. Autism. 2019;23(4):943–953. Crossref, Medline, Google Scholar

31. Lipinski S, Blanke ES, Sünkel U, et al. Präferenzen erwachsener Autist_innen bei Teilnahme an wissenschaftlichen Studien. [The preferences of autistic adults regarding participation in scientific studies] 12. Wissenschaftliche Tagung Autismus-Spektrum (WTAS). February 21–22, 2019. Berlin, Germany. Berlin: Wissenschaftliche Gesellschaft Autismus-Spektrum (WGAS) e.V.; 2019. 131 p. Google Scholar

32. Pellicano E., Lawson W, Hall G, et al. “I Knew She'd Get It, and Get Me”: Participants' perspectives of a Participatory Autism Research Project. Autism Adulthood. 2021 [Epub ahead of print]; DOI:10.1089/aut.2021.0039 Link, Google Scholar

33. Milton D, Ridout S, Kourti M, Loomes G, Martin N. A critical reflection on the development of the Participatory Autism Research Collective (PARC). Tizard Learn Disabil Rev. 2019;24(2):82–89. Crossref, Google Scholar

34. Stenning A, Rosqvist AB. Neurodiversity studies: Mapping out possibilities of a new critical paradigm. Disabil Soc. 2021;36(9):1532–1537. Crossref, Medline, Google Scholar

35. Hipolito I, Hutto D, Chown N. Understanding autistic individuals: Cognitive diversity not theoretical deficit. In: Bertilsdotter-Rosqvist H, Stenning A, Chown N, eds. Neurodiversity Studies: A New Critical Paradigm. Abingdon, UK: Routledge; 2020. Crossref, Google Scholar

36. Chapman R. Defining neurodiversity for research and practice. In: Bertilsdotter-Rosqvist H, Stenning A, Chown N, eds. Neurodiversity Studies: A New Critical Paradigm. Abingdon, UK: Routledge; 2020. Crossref, Google Scholar

37. Milton DE. On the ontological status of autism: The ‘double empathy problem’. Disabil Soc. 2012;27(6):883–887. Crossref, Google Scholar

38. Buckle , KL, Leadbitter K, Poliakoff E, Gowen E. “No Way Out Except From External Intervention”: First-hand accounts of autistic inertia. Front Psychol. 2021;12:631596. Crossref, Medline, Google Scholar

39. Murray D, Lesser M, Lawson W. Attention, monotropism and the diagnostic criteria for autism. Autism. 2005;9(2):139–156. Crossref, Medline, Google Scholar

40. Ashinoff BK, Abu-Akel A. Hyperfocus: The forgotten frontier of attention. Psychol Res. 2021;85(1):1–19. Crossref, Medline, Google Scholar

41. Sinclair J. Cultural commentary: Being autistic together. Disabil Stud Q. 2010;30(1). https://dsq-sds.org/article/view/1075/1248 Accessed January 27, 2022. Google Scholar

42. Fulton R, Richardson K, Jones RA, Reardon E. Sensory Trauma—Autism Sensory Difference and the Daily Experience of Fear. United Kingdom, Carmarthen: Autism Wellbeing Press; 2020. Google Scholar

43. Bettin J. Nurturing good company, one trusted relationship at a time. 2021. https://autcollab.org/2021/07/25/nurturing-good-company-one-trusted-relationship-at-a-time/ Accessed January 27, 2022. Google Scholar

44. Leadbitter K, Buckle KL, Ellis C, Dekker M. Autistic self-advocacy and the neurodiversity movement: Implications for Autism Early Intervention Research and Practice. Front Psychol. 2021;12:635690. Crossref, Medline, Google Scholar

45. Calleja S, Islam FMA, Kingsley J, McDonald R. Healthcare access for autistic adults: A systematic review. Medicine (Baltimore). 2020;99(29):e20899. Crossref, Medline, Google Scholar

46. Malik-Soni N, Shaker A, Luck H, et al. Tackling healthcare access barriers for individuals with autism from diagnosis to adulthood. Pediatr Res. 2021 [Epub ahead of print]; DOI:10.1038/s41390-021-01465-y Crossref, Google Scholar

47. Doherty AJ, Atherton H, Boland P, et al. Barriers and facilitators to primary health care for people with intellectual disabilities and/or autism: An integrative review. BJGP Open. 2020;4(3):bjgpopen20X101030. DOI:10.3399/bjgpopen20X101030 Crossref, Google Scholar

48. Doherty M, Neilson S, O'Sullivan J, et al. Barriers to healthcare and self-reported adverse outcomes for autistic adults: A cross-sectional study. BMJ Open. 2022;12(2):e056904. Crossref, Medline, Google Scholar

49. Haydon C, Doherty M, Davidson IA. Autism: Making reasonable adjustments in health care. Br J Hosp Med (Lond). 2021;82(12):1–11. Crossref, Google Scholar

50. Helverschou SB, Bakken TL, Berge H. Preliminary findings from a Nationwide, Multicenter Mental Health Service for Adults and older adolescents with Autism Spectrum Disorder and ID. J Policy Pract Intellect Disabil. 2021;18(2):162–173. Crossref, Google Scholar

51. Adams D, Young K. A systematic review of the perceived barriers and facilitators to accessing psychological treatment for mental health problems in Individuals on the Autism Spectrum. Rev J Autism Dev Disord. 2021;8(10):436–453. Crossref, Google Scholar

52. Lipinski S, Bögel K, Blanke E, Sünkel U, Dziobek I. A blind spot in mental healthcare? Psychotherapists lack education and expertise for the support of adults on the autism spectrum. Autism. 2021;13623613211057973. [Epub ahead of print]; DOI:10.1177/13623613211057973 Crossref, Medline, Google Scholar

53. Lipinski S, Blanke ES, Sünkel U, Dizobek , I. Outpatient psychotherapy for adults with high-functioning autism spectrum condition: Utilization, treatment satisfaction, and pre-ferred modifications. J Autism Dev Disord. 2019;49(3):1154–1168. Crossref, Medline, Google Scholar

54. Smith DaWalt L, Hong J, Greenberg JS, Mailick MR. Mortality in individuals with autism spectrum disorder: Predictors over a 20-year period. Autism. 2019;23(7):1732–1739. Crossref, Medline, Google Scholar

55. Hwang J, Srasuebkul P, Foley K-R, Arnold S, Trollor J. Mortality and cause of death of Australians on the autism spectrum. Autism Res. 2019;12(5):806–815. Crossref, Medline, Google Scholar

56. Hirvikoski T, Mittendorfer-Rutz E, Boman M, Larsson H, Lichtenstein P, Bölte S. Premature mortality in autism spectrum disorder. Br J Psychiatry. 2016;208(3):232–238. Crossref, Medline, Google Scholar

57. Kirby AV, Bakian AV, Zhang Y, Bilder DA, Keeshin BR, Coon H. A 20-year study of suicide death in a statewide autism population. Autism Res. 2019;12(4):658–666. Crossref, Medline, Google Scholar

58. Mouridsen SE, Brønnum-Hansen H, Rich B, Isager T. Mortality and causes of death in autism spectrum disorders: An update. Autism. 2008;12(4):403–414. Crossref, Medline, Google Scholar

59. A4A and the Campaign Against Phony Autism Cures (2021): Canadian Govt Consulting Document: Combating Phony Autism Treatments. https://a4aontario.com/2021/05/31/canadian-govt-consulting-document-combating-phony-autism-treatments/ Accessed January 27, 2022. Google Scholar

60. Autistic Self Advocacy Network (2020): ASAN leads letter on supporters in hospitals. https://autisticadvocacy.org/2020/05/asan-leads-letter-on-supporters/ Accessed February 1, 2022 Google Scholar

61. A4A Ontario. Letter to Public Health Ontario: Create uniform protocols for disabled patients' communication access. https://a4aontario.com/2020/05/05/letter-to-public-health-ontario-create-uniform-protocols-for-disabled-patients-communication-access-in-hospitals/ Accessed February 1, 2022. Google Scholar

62. Sasson N, Faso D, Nugent J, et al. Peers are less willing to interact with those with autism based on thin slice judgments. Sci Rep. 2017;7(1):40700. Crossref, Medline, Google Scholar

63. Holden R, Mueller J, McGowan J, et al. Investigating bullying as a predictor of suicidality in a clinical sample of adolescents with Autism Spectrum Disorder. Autism Res. 2020;13(6):988–997. Crossref, Medline, Google Scholar

64. Cooper K, Smith LGE, Russell A. Social identity, self-esteem, and mental health in autism. Eur J Soc Psychol. 2017;47(7):844–854. Crossref, Google Scholar

65. Moseley RL, Turner-Cobb JM, Spahr CM, Shields GS, Slavich GM. Lifetime and perceived stress, social support, loneliness, and health in autistic adults. Health Psychol. 2021;4(8):556–568. Crossref, Google Scholar

66. Cassidy SA, Robertson A, Townsend E, et al. Advancing our understanding of self-harm, suicidal thoughts and behaviours in autism. J Autism Dev Disord. 2020;50(10):3445–3449. Crossref, Medline, Google Scholar

67. Stewart LA, Lee LC. Screening for autism spectrum disorder in low- and middle-income countries: A systematic review. Autism. 2017;21(5):527–539. Crossref, Medline, Google Scholar

68. Bauer K, Morin KL, Renz TE, Zungu S. Autism assessment in low- and middle-income countries: Feasibility and usability of Western Tools. Focus Autism Other Dev Disabil. 2022 [Epub ahead of print]; DOI:10.1177/10883576211073691 Crossref, Google Scholar

69. Stagg SD, Belcher H. Living with autism without knowing: Receiving a diagnosis in later life. Health Psychol Behav Med. 2019;7(1):348–361. Crossref, Medline, Google Scholar

70. Union of the Physically Impaired Against Segregation (1976): Fundamental Principles of Disability: Being a Summary of the Discussion Held on 22nd November, 1975 and Containing Commentaries from Each Organisation. London, UK: UPIAS/Disability Alliance; 1976. Google Scholar

71. Degener T. A human rights model of disability. In: Blanck P, Flynn E, eds.Routledge Handbook of Disability Law and Human Rights. Abingdon, UK: Routledge; 2016;31–49. Google Scholar

72. Sanz-Cervera P, Fernández-Andrés MI, Pastor-Cerezuela G, Tárraga-Mínguez R. The effectiveness of TEACCH intervention in autism spectrum disorder: A review study. Papeles del Psicólogo. 2018;39(1):40–50. Google Scholar

73. Spinney L. Therapy for autistic children causes outcry in France. Lancet. 2007;370(9588):645–646. Crossref, Medline, Google Scholar

74. Delion P, Labreuche J, Deplanque D, et al. Therapeutic body wraps (TBW) for treatment of severe injurious behaviour in children with autism spectrum disorder (ASD): A 3-month randomized controlled feasibility study. PLOS ONE. 2018;13(6):e0198726. Crossref, Medline, Google Scholar

75. Mercer J. International concerns about holding therapy. Res Soc Work Pract. 2014;24(2):188–191. Crossref, Google Scholar

76. Horvath K, Stefanatos G, Sokolski KN, Wachtel R, Nabors L, Tildon JT. Improved social and language skills after secretin administration in patients with autistic spectrum disorders. J Assoc Acad Minor Phys. 1998;9(1):9–15. Medline, Google Scholar

77. Rossignol DA, Bradstreet JJ, Van Dyke K, et al. Hyperbaric oxygen treatment in autism spectrum disorders. Med Gas Res. 2012;2(1):16. Crossref, Medline, Google Scholar

78. Yap CX, Henders AK, Alvares GA, et al. Autism-related dietary preferences mediate autism-gut microbiome associations. Cell. 2021;184(24):5916–5931.e17. Crossref, Medline, Google Scholar

79. Xinhua News Agency. China launches large-scale autism study using fecal transplant therapy. www.china.org.cn/china/Off_the_Wire/2022-01/22/content_78005649.htm Accessed January 27, 2022. Google Scholar

80. Anagnostou E, Soorya L, Brian J, et al. Intranasal oxytocin in the treatment of autism spectrum disorders: A review of literature and early safety and efficacy data in youth. Brain Res. 2014;1580:188–198. Crossref, Medline, Google Scholar

81. Price J. Cell therapy approaches to autism: A review of clinical trial data. Mol Autism. 2020;11(1):37. Crossref, Medline, Google Scholar

82. Suomen Autismikirjon Yhdistys, Organiserade Aspergare, Eesti Aspergerite Ühing. Response to the European Medicines Agency regarding’ Draft guideline on the clinical development of medicinal products for the treatment of Autism Spectrum Disorder’. 2016. https://asy.fi/response-to-ema-guideline/ Accessed January 27, 2022. Google Scholar

83. Corneloup T. L'urgence de la désinstitutionnalisation: L'évaluation de la France sur la CDPH/The urgency for deinstitutionalization: CRPD and the evaluation of France. Presentation at the Autistic Advocacy Across Europe online conference. November 27, 2021. https://youtu.be/CV7ZBZXkyFE Accessed January 27, 2022. Google Scholar

84. Hull L, Levy L, Lai MC, et al. Is social camouflaging associated with anxiety and depression in autistic adults?. Mol Autism. 2021;12:13. DOI:10.1186/s13229-021-00421-1 Crossref, Medline, Google Scholar

85. Perry E, Mandy W, Hull L, et al. Understanding camouflaging as a response to autism-related stigma: A social identity theory approach. J Autism Dev Disord. 2022;52(2):800–810. Crossref, Medline, Google Scholar

86. Rekers GA, Lovaas I. Behavioral treatment of Deviant Sex-Role Behaviors in a Male Child. J Appl Behav Anal. 1974;7(2):173–190. Crossref, Medline, Google Scholar

87. Larsson EV, Wright S. O. Ivar Lovaas (1927–2010). Behav Anal. 2011;34(1):111–114. Crossref, Google Scholar

88. Sandoval-Norton AH, Shkedy G, Rushby JA (Reviewing editor). How much compliance is too much compliance: Is long-term ABA therapy abuse? Cogent Psychol. 2019;6(1). DOI: 10.1080/23311908.2019.1641258. Crossref, Google Scholar

89. Reichow B, Hume K, Barton EE, Boyd BA. Early intensive behavioral intervention (EIBI) for young children with autism spectrum disorders (ASD). Cochrane Database Syst Rev. 2018;5(5):CD009260. Medline, Google Scholar

90. Bottema-Beutel K, Crowley S, Sandbank M, Woynaroski TG. Research review: Conflicts of Interest (COIs) in autism early intervention research—A meta-analysis of COI influences on intervention effects. J Child Psychol Psychiatry. 2021;62(1):5–15. Crossref, Medline, Google Scholar

91. United States Department of Defense. Report to the Committees on Armed Services of the Senate and House of Representatives: The Department of Defense Comprehensive Autism Care Demonstration Annual Report. 2020. https://health.mil/Reference-Center/Congressional-Testimonies/2020/06/25/Annual-Report-on-Autism-Care-Demonstration-Program Accessed January 27, 2022. Google Scholar

92. Crane L, Hearst C, Ashworth M, Davies J, Hill EL. Supporting newly identified or diagnosed autistic adults: An initial evaluation of an Autistic-Led Programme. J Autism Dev Disord. 2021;51(3):892–905. Crossref, Medline, Google Scholar

93. McDonnell A, McCreadie M, Mills R, Deveau R, Anker R, Hayden J. The role of physiological arousal in the management of challenging behaviours in individuals with autistic spectrum disorders. Res Dev Disabil. 2015;36C:311–322. Crossref, Medline, Google Scholar

94. Pellicano E, Crane L, Gaudion K, Shaping Autism Research Team. Participatory Autism Research: A Starter Pack. London, United Kingdom: UCL Institute of Education; 2017. Google Scholar

95. The National Autistic Taskforce. An Independent Guide to Quality Care for Autistic People. United Kingdom: The National Autistic Taskforce; 2019. https://nationalautistictaskforce.org.uk/an-independent-guide-to-quality-care-for-autistic-people/ Accessed January 27, 2022. Google Scholar

96. Lipinski S, Suoninen A, Weve D. EUCAP survey data as a means to support advocacy. Presentation at the Autistic Advocacy Across Europe Online Conference. 2021. https://youtu.be/EDWasd9MJ8o Accessed February 1, 2022. Google Scholar

97. Autistic Self-Advocacy Network. For whose benefit? Evidence, ethics and effectiveness of autism interventions. https://autisticadvocacy.org/policy/briefs/intervention-ethics/ Accessed January 27, 2022. Google Scholar

98. Doherty M. Spectrum 10K and Cognitive Dissonance in Autism Research. 2021. www.thinkingautismguide.com/2021/10/spectrum-10k-and-cognitive-dissonance.html Accessed February 6, 2022. Google Scholar

99. Manzini A, Jones EJH, Charman T, Elsabbagh M, Johnson MH, Singh I. Ethical dimensions of translational developmental neuroscience research in autism. J Child Psychol Psychiatry. 2021;62(11):1363–1373. Crossref, Medline, Google Scholar

100. Kumagaya S. Informational support design aiming for the accommodation of individuals with autism spectrum disorders based on the social model of disability. J Natl Inst Public Health. 2017;66(5):532–544. Google Scholar

101. Keating CT. Participatory autism research: How consultation benefits everyone. Front Psychol. 2021;12:713982. Crossref, Medline, Google Scholar

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If the address matches an existing account you will receive an email with instructions to reset your password.

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'I can actually do it without any help or someone watching over me all the time and giving me constant instruction': Autistic adolescent boys' perspectives on engagement in online video gaming

Publication Type:

Journal article

Authors:

Pavlopoulou G, Usher C, Pearson A

Publication date:

28/05/2022

Journal:

British Journal of Developmental Psychology

Keywords:

Social Sciences, Psychology, Developmental, Psychology, adolescence, autism, gaming, video games, wellbeing, SPECTRUM DISORDER, MEDIA USE, GAMES, EXPERIENCES, ADULTS, ADHD

Notes:

© 2022 The Authors. British Journal of Developmental Psycholog y published by John Wiley & Sons Ltd on behalf of British Psychological Society. This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

Research into autistic adolescents' engagement in online gaming has so far focused on time spent gaming, or characterizing problematic gaming behaviour and has relied mostly on caregiver report. In the current study, we interviewed 12 autistic adolescent boys, asking about their perspectives on their engagement in online gaming, and their motivations. We analysed the interview data using thematic analysis and identified three key themes in the data, which focused on agency and a sense of belonging, emotion regulation, and acknowledgement of the differing perceptions that the young people and their caregivers had of gaming. Our findings show the need to include the viewpoints of autistic young people in research about their interests and well-being, and provide insights that can help caregivers and professionals to support autistic young people in flourishing.

Author

IOE - Psychology & Human Development

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‘I can actually do it without any help or someone watching over me all the time and giving me constant instruction’: Autistic adolescent boys’ perspectives on engagement in online video gaming

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Lonely Lockdown. Life for siblings of disabled children in the UK.

Authors:

Kassa C, Pavlopoulou G

publication date:

31/03/2021

Commisioning body:

Sibs Charity

Keywords:

siblings, SEND families, mental health, lockdown, educational psychology

Addresses:

GEORGIA PAVLOPOULOU
University College London
Psychology and Human Development
UCL Institute of Education
london
Please select...
WC1H 0AA
United Kingdom

In May 2020, Sibs conducted a survey of parents in order to better understand how the needs of siblings of disabled children were affected by lockdown. The first survey results made difficult reading: 75% of parents felt their sibling child’s mental health had worsened in lockdown; 50% of siblings were providing more care; a third were missing family and friends. Ten months on and in lockdown 3, we wanted to explore if and how things had changed for siblings of disabled children. Sibs Charity, in collaboration with University College London (UCL) researcher Dr Georgia Pavlopoulou launched a survey in February 2021 for 4 weeks to hear from parents about family experiences with a focus on siblings' day-to-day experiences and mental health needs. We also wanted to understand the nature of any school support, how the relationships between siblings and their brothers and sisters had been affected and what some of the greatest challenges were for children and young people. We hope the results of this survey will help to highlight the impact which lockdown has had on the majority of siblings and go on to inform a recovery response. Our findings suggest that the pandemic has had both an immediate and lasting effect on the mental health of many siblings who will need access to appropriate support from CAMHS services and schools in the months and years to come as part of a recovery plan.

Author

IOE - Psychology & Human Development

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Lonely Lockdown. Life for siblings of disabled children in the UK.

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We are currently working on a number of research and knowledge exchange projects with internal and external collaborators.

For more information,  click on boxes below.

If you want more information please contact Dr Georgia Pavlopoulou: georgia.pavlopoulou@ucl.ac.uk

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Welcome to our Group for Research in Relationships and NeuroDiversity (GRRAND) at the Department of Psychology and Human Development at the UCL Institute of Education (IOE). We are a diverse bunch of researchers, scholar and art activists, advocates, service users and health consultants interested in human development and neurodiversity.

The term neurodiversity refers to variation in the human brain regarding sociability, learning, attention, mood and other mental functions. Traditionally, projects are made about neurodivergent people not with them, but GRRAND breaks the mould by redefining disabled people's narratives from the perspective of their lived experience. Relationships are one of the most important aspects of our lives, yet we can often forget just how crucial our connections with other people are for our physical and mental health and wellbeing. Neurodivergent people face unique challenges and opportunities to socially connect to family, friends, or their community and form relationships. Those who enjoy these connections are happier, physically healthier and live longer, with fewer mental health problems than people who are less well connected.

Together we aim to better understand social factors in the mental, emotional, and physical well-being of people with a diagnosis of autism and/or ADHD, syndromes and other neurodevelopmental conditions across the lifespan, and to deliver coproduced research and knowledge exchange with neurodivergent people in their preferred ways. To achieve this, we are collaborating with other internal and external researchers, advocates, school staff, service users, activists, service consultants and charity leaders.

To answer our research questions, we combine behavioural, phenomenological and community based participatory techniques together with a developmental approach in research. Importantly, we work with advisory and coproduction neurodivergent led community groups to ensure that our research meets the priorities and needs of the community we serve.

GRRAND is also interested in capturing and recording the many benefits of creative knowledge exchanges between autistic and non autistic researchers and artists. Through our work in the community, we often address the questions of authenticity and representation pertinent to creative interdisciplinary collaboration with neurodivergent participants in research and public engagement. Our activities set out to be mutually beneficial, offering communities the opportunity to develop their own creative practice, find new forms of self-expression, and engage with our research themes on their own terms.

Finally, we organise train and engage days as well as bespoke Autism Mental Health Short Courses to improve access and engagement with mental health services by erasing the damaging stereotypes that exist about disabled people, and celebrating their diverse strengths and unique perspectives.

Our team is always growing, so please do get in touch if you are interested in joining us.

You can stay updated with our news and latest publications on this website. You can also follow us on Twitter and Instagram.

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The term neurodiversity refers to variation in the human brain regarding sociability, learning, attention, mood and other mental functions. Traditionally, projects are made about neurodivergent people not with them, but GRRAND breaks the mould by redefining disabled people's narratives from the perspective of their lived experience.

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Founder of the Group for Research in Relationships And NeuroDiversity- GRRAND:

https://www.neurodiversity-research.org/
Research Activities:
I have been involved in funded projects by Autistica (CI), BERA (CI), UCL Train and Engage (PI), UCL ChangeMakers (PI), The John and Lorna Wing Foundation (PI), Higher Education Innovation Knowledge Exchange (CI) and UCL Culture (PI).

Between September 2021-2025 I will be working as Senior Research Associate/Co-investigator for our MRC/AHRC/ESRC Adolescence, Mental Health and the Developing Mind recent grant. This 4 years project aims to develop new ways to reduce depression risk in young ADHDers- autistic people by adapting and integrating existing interventions in the school environment.

I have developed academic, NHS and third sector collaborations both nationally and internationally. I am passionate about working with marginalized groups, service users, scholar activists and Trusts to facilitate service transformation and advance mental health practice through better cross agency collaboration, translational research and better service user participation.

Research Impact:
During the pandemic I co-authored reports which have been cited multiple times by Policy Innovation and Evaluation Research Unit (PIRU), commissioned by the Department of Health and Social Care (DHSC) which informed government's new autism strategy 2021-2026.
Research supervision:
Family mental health

School mental health

Relationships and Neurodiversity

Autism, ADHD, Leaning Disabilities,Syndromes

Adolescents' mental health (low mood, anxiety)

LGBTQ+ mental health and access to psychological services

Black/Asian families' mental health and access to psychological and educational services

SEND educational and psychological evidence-based support

Adolescents' self-care strategies

Sexuality/sex education and learning disabilities

Applications of counselling

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Founder of the Group for Research in Relationships And NeuroDiversity- GRRAND: https://www.neurodiversity-research.org/ Research Activities: I have been involved in funded projects by Autistica (CI), BERA (CI), UCL Train and Engage (PI), UCL ChangeMakers (PI), The John and Lorna Wing Foundation (PI), Higher Education Innovation Knowledge Exchange (CI) and UCL Culture (PI).

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https://twitter.com/MsJoBillington/status/1539546204585046016?s=20&t=qcaYfO2OYh9gIBvF9uHsNg

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Hi @MattRodda. Pls could you tell me what we can do to stop the Bill of Rights from erroding our fundamental human rights? As a parent of disabled children, I know the lack of regard our govt already has for vulnerable citizens & things look like they are about to get much worse

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Hi @MattRodda. Pls could you tell me what we can do to stop the Bill of Rights from erroding our fundamental human rights? As a parent of disabled children, I know the lack of regard our govt already has for vulnerable citizens & things look like they are about to get much worse

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Hi @MattRodda. Pls could you tell me what we can do to stop the Bill of Rights from erroding our fundamental human rights? As a parent of disabled children, I know the lack of regard our govt already has for vulnerable citizens & things look like they are about to get much worse
— Jo Billington (@MsJoBillington) June 22, 2022

# data[].attributes.attachment_link.metadata.attachment_props_source.data.text
Hi @MattRodda. Pls could you tell me what we can do to stop the Bill of Rights from erroding our fundamental human rights? As a parent of disabled children, I know the lack of regard our govt already has for vulnerable citizens & things look like they are about to get much worse

# data[].attributes.attachment_link.metadata.attachment_props.original_text
Hi @MattRodda. Pls could you tell me what we can do to stop the Bill of Rights from erroding our fundamental human rights? As a parent of disabled children, I know the lack of regard our govt already has for vulnerable citizens & things look like they are about to get much worse

# data[].attributes.attachment_link.metadata.attachment_props.text
Hi @MattRodda. Pls could you tell me what we can do to stop the Bill of Rights from erroding our fundamental human rights? As a parent of disabled children, I know the lack of regard our govt already has for vulnerable citizens & things look like they are about to get much worse

# data[].attributes.attachment_link.readable_text
BACKGROUND: The experiences of siblings in early adolescent years who grow up with an autistic brother or sister have received very little research interest, especially in terms of sisters' experiences. Hence our understanding of wellbeing opportunities and challenges in siblings' everyday life is inadequate and not reflected in the current clinical practices. METHODS: Semi-structured interviews utilising an active, non-judgemental and curious stance to explore how sisters make sense of their everyday experiences (inspired by the notion of mentalizing) were conducted to capture important experiences of nine typically developing female siblings. RESULTS: Interpretative Phenomenological Analysis (IPA) was employed. The master themes included: (i) sisters' interactions with their siblings- 'I don't live with autism, I live with my sister' (ii) sisters' interactions with their parents- 'Always there for us, but often asking too much', (iii) practical struggles of caring- 'Like a lonely fighter, tired but always on duty', (iv) perceived sisters' needs- 'I care about my brother and I want society to care about us'. DISCUSSION: As experts of their own lived experience, sisters shed light on their day-to-day experiences. The themes derived from their experiences may help to draw attention to an appreciation of everyday life including planning for the parts that remain a struggle. This latter point is discussed in terms of implications and adoption of an existential view of wellbeing for future research and practice.

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BACKGROUND: The experiences of siblings in early adolescent years who grow up with an autistic brother or sister have received very little research interest, especially in terms of sisters' experiences. Hence our understanding of wellbeing opportunities and challenges in siblings' everyday life is inadequate and not reflected in the current clinical practices.

# data[].attributes.attachment_link.readable_text
Interpersonal victimisation (also known as mate crime) is defined as exploitation, cruelty and abuse from someone close to the victim (i.e. a friend or family member). Recent research suggests that autistic people are more likely to be the victims of interpersonal victimisation (Griffiths et al. 2019; Forster and Pearson, 2019). The proposed research aims to to examine the experiences of autistic...

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Investigating Interpersonal Victimisation in Autistic People across the Lifespan

# data[].attributes.attachment_link.description
Interpersonal victimisation (also known as mate crime) is defined as exploitation, cruelty and abuse from someone close to the victim (i.e. a friend or family member). Recent research suggests that autistic people are more likely to be the victims of interpersonal victimisation (Griffiths et al. 2019; Forster and Pearson, 2019).

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Investigating Interpersonal Victimisation in Autistic People across the Lifespan

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This project aims to examine experiences of interpersonal violence and victimisation in autistic people, and provide evidence as to what is needed to support those affected Hosted on the Open Science Framework

# data[].attributes.attachment_link.readable_text
Interpersonal victimisation (also known as mate crime) is defined as exploitation, cruelty and abuse from someone close to the victim (i.e. a friend or family member). Recent research suggests that autistic people are more likely to be the victims of interpersonal victimisation (Griffiths et al. 2019; Forster and Pearson, 2019). The proposed research aims to to examine the experiences of autistic...

# data[].attributes.attachment_link.title
Investigating Interpersonal Victimisation in Autistic People across the Lifespan

# data[].attributes.attachment_link.description
Interpersonal victimisation (also known as mate crime) is defined as exploitation, cruelty and abuse from someone close to the victim (i.e. a friend or family member). Recent research suggests that autistic people are more likely to be the victims of interpersonal victimisation (Griffiths et al. 2019; Forster and Pearson, 2019).

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Abstract

Background: The victimisation of autistic people by familiar others (interpersonal victimisation) is an understudied phenomenon despite suggestions that prevalence rates may be disproportionately high. We know very little about the way autistic people perceive these experiences, and how to support them. The aim of the current study was to explore experiences of interpersonal victimisation among autistic adults from their own perspective. Method: We recruited 43 autistic adults to take part in a qualitative online study, and asked about their experiences of being victimised or taken advantage of by people they know in the past. We analysed their comments at the semantic level using inductive thematic analysis, from a critical realist perspective. Results: We identified two key themes in the data. The first theme, 'cycles of victimisation' highlighted the occurrence of polyvictimisation in the sample. The second ('perceptions of victimisation') focussed on how these experiences were related to difficulties with trust (of both self and others), the recognition of victimisation, and heightened compliance. The participants expressed difficulty with saying no to people, and found it difficult to identify when someone had negative or manipulative intentions. Conclusions: Our findings suggest that autistic adults experience victimisation from a range of close others, and may find it difficult to recognise when someone is acting in an abusive manner. Many participants had experienced heightened compliance in response to unreasonable requests from others, however reasons for this were varied (e.g. fear, desire to avoid confrontation) and require further investigation. These findings have implications for developing supports which enable autistic adults to recognise their own boundaries and advocate for themselves, in addition to helping them to recognise what a healthy relationship looks like.

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# data[].attributes.attachment_link.title
"This was just how this friendship worked": Experiences of Interpersonal Victimisation in Autistic Adults

# data[].attributes.attachment_link.description
Background: The victimisation of autistic people by familiar others (interpersonal victimisation) is an understudied phenomenon despite suggestions that prevalence rates may be disproportionately high. We know very little about the way autistic people perceive these experiences, and how to support them.

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Abstract

Background: The victimisation of autistic people by familiar others (interpersonal victimisation) is an understudied phenomenon despite suggestions that prevalence rates may be disproportionately high. We know very little about the way autistic people perceive these experiences, and how to support them. The aim of the current study was to explore experiences of interpersonal victimisation among autistic adults from their own perspective. Method: We recruited 43 autistic adults to take part in a qualitative online study, and asked about their experiences of being victimised or taken advantage of by people they know in the past. We analysed their comments at the semantic level using inductive thematic analysis, from a critical realist perspective. Results: We identified two key themes in the data. The first theme, 'cycles of victimisation' highlighted the occurrence of polyvictimisation in the sample. The second ('perceptions of victimisation') focussed on how these experiences were related to difficulties with trust (of both self and others), the recognition of victimisation, and heightened compliance. The participants expressed difficulty with saying no to people, and found it difficult to identify when someone had negative or manipulative intentions. Conclusions: Our findings suggest that autistic adults experience victimisation from a range of close others, and may find it difficult to recognise when someone is acting in an abusive manner. Many participants had experienced heightened compliance in response to unreasonable requests from others, however reasons for this were varied (e.g. fear, desire to avoid confrontation) and require further investigation. These findings have implications for developing supports which enable autistic adults to recognise their own boundaries and advocate for themselves, in addition to helping them to recognise what a healthy relationship looks like.

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"This was just how this friendship worked": Experiences of Interpersonal Victimisation in Autistic Adults

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Background: The victimisation of autistic people by familiar others (interpersonal victimisation) is an understudied phenomenon despite suggestions that prevalence rates may be disproportionately high. We know very little about the way autistic people perceive these experiences, and how to support them.

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Background:

The victimisation of autistic people by familiar others (‘mate crime’, or interpersonal victimisation) is an understudied phenomenon despite suggestions that prevalence rates may be disproportionately high. The aim of the current study was to explore experiences of interpersonal victimisation in autistic adults, to find out whether there were any common factors present.

Method:

We used an online survey to recruit 64 autistic adults, and asked them whether they had been victimised or taken advantage of by people they know in the past, and what had happened. Fifty-one people provided written accounts of their experiences, which we analysed at the semantic level using inductive thematic analysis.

Results:

We identified three key themes in the data. The first (‘what counts’) focussed on who had victimised the participants, and the type of acts they had perpetrated. The second theme ‘It takes two (is a concept that perpetuates victim blaming and self-doubt)’focussed on the role that compliance, and perpetrator assumptions about the participant had played in the abusive situations. The final theme,‘time as a healer’centered on what had helped participants after their experiences.

Conclusions:

Our findings explore autistic people’s perceptions of their victimisation experiences and strongly suggest that we do not focus on understanding victimisation through the lens of ‘social difficulty’or as an inevitable outcome for marginalised people.

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Children with autism do not overimitate
L Marsh, A Pearson, D Ropar, A Hamilton

Current Biology 23 (7), R266-R268, 2013

110

2013

A review of visual perspective taking in autism spectrum disorder
A Pearson, D Ropar, AF de C. Hamilton

Frontiers in human neuroscience 7, 652, 2013

107

2013

Spatial transformations of bodies and objects in adults with autism spectrum disorder
A Pearson, L Marsh, A Hamilton, D Ropar

Journal of autism and developmental disorders 44 (9), 2277-2289, 2014

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A conceptual analysis of autistic masking: Understanding the narrative of stigma and the illusion of choice
A Pearson, K Rose

Autism in Adulthood 3 (1), 52-60, 2021

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Cognitive Mechanisms underlying visual perspective taking in typical and ASC children
A Pearson, L Marsh, D Ropar, A Hamilton

Autism Research 9 (1), 121-130, 2016

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2016

Predictive gaze during observation of irrational actions in adults with autism spectrum conditions
LE Marsh, A Pearson, D Ropar, AFC Hamilton

Journal of autism and developmental disorders 45 (1), 245-261, 2015

30

2015

Using other minds as a window onto the world: guessing what happened from clues in behaviour
D Pillai, E Sheppard, D Ropar, L Marsh, A Pearson, P Mitchell

Journal of autism and developmental disorders 44 (10), 2430-2439, 2014

26

2014

Systemic lupus erythematosis presenting as isolated congestive heart failure.
G Berg, J Bodet, K Webb, G Williams, D Palmer, B Ruoff, A Pearson

The Journal of Rheumatology 12 (6), 1182-1185, 1985

26

1985

“Masking is life”: Experiences of masking in autistic and nonautistic adults
D Miller, J Rees, A Pearson

Autism in Adulthood 3 (4), 330-338, 2021

13

2021

“Bullies tend to be obvious”: autistic adults perceptions of friendship and the concept of ‘mate crime’.
S Forster, A Pearson

Disability & Society 35 (7), 1103-1123, 2020

12

2020

Experiences of dialectical behaviour therapy in a community setting for individuals with intellectual disabilities
A Pearson, K Austin, N Rose, J Rose

International Journal of Developmental Disabilities 67 (4), 283-295, 2021

6

2021

de CHAF
A Pearson, D Ropar

A review of visual perspective taking in autism spectrum disorder. Front Hum …, 2013

5

2013

“This was just how this friendship worked”: Experiences of Interpersonal Victimisation in Autistic Adults
A Pearson, J Rees, S Forster

OSF Preprints, 2020

3

2020

Creating truly radical change in autism research: A response to Frith and Mottron
A Pearson, R Woods, H Morgan, M Botha

Autism Res 14 (10), 2243-2244, 2021

2

2021

Can cerebral lateralisation explain heterogeneity in language and increased non-right handedness in autism? A literature review
A Pearson, S Hodgetts

Research in Developmental Disabilities 105, 103738, 2020

2

2020

The development of visuo-spatial perspective taking in autism spectrum disorder
A Pearson

University of Nottingham, 2014

2

2014

Trauma informed participatory research: Reflections on co-producing a research proposal
S Lonbay, A Pearson, E Hamilton, P Higgins, E Foulkes, M Glascott

Gateways: International Journal of Community Research and Engagement 14 (1), 1-8, 2021

1

2021

Investigating the role of solvent type and microwave selective heating on the extraction of phenolic compounds from cacao (Theobroma cacao L.) pod husk
SR Dewi, LA Stevens, AE Pearson, R Ferrari, DJ Irvine, ER Binner

Food and Bioproducts Processing, 2022

2022

‘I can actually do it without any help or someone watching over me all the time and giving me constant instruction’: Autistic adolescent boys' perspectives on engagement in …
G Pavlopoulou, C Usher, A Pearson

British Journal of Developmental Psychology, 2022

2022

‘Professionals are the hardest to trust’Supporting autistic adults who have experienced interpersonal victimisation
A Pearson, K Rose, J Rees

OSF Preprints, 2022

2022

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Society and mental health 10 (1), 20-34, 2020

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Does language matter? Identity-first versus person-first language use in autism research: A response to Vivanti
M Botha, J Hanlon, GL Williams

Journal of Autism and Developmental Disorders, 1-9, 2021

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"Autism is me": an investigation of how autistic individuals make sense of autism and stigma
M Botha, B Dibb, DM Frost

Disability and Society, Online first, 2020

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Academic, activist, or advocate? angry, entangled, and emerging: A critical reflection on autism knowledge production
M Botha

Frontiers in Psychology, 4196, 2021

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Autistic community connectedness as a buffer against the effects of minority stress.
M Botha

University of Surrey, 2020

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Critical realism, community psychology, and the curious case of autism: a philosophy and practice of science with social justice in mind
M Botha

Journal of Community Psychology, 2021

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M Botha, K Gillespie-Lynch

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J Den Houting, M Botha, E Cage, DR Jones, SY Kim

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Creating truly radical change in autism research: A response to Frith and Mottron
A Pearson, R Woods, H Morgan, M Botha

Autism Res 14 (10), 2243-2244, 2021

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‘It’s being a part of a grand tradition, a grand counter-culture which involves communities’: A qualitative investigation of autistic community connectedness
M Botha, B Dibb, DM Frost

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E Cage, R Cranney, M Botha

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M Botha, B Dibb, D Frost

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M Botha, A Grant, A Memmott, D Milton, A Pearson, GL Williams

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‪University of Stirling‬ - ‪‪Cited by 320‬‬ - ‪Psychology‬

# data[].attributes.attachment_link.title
Neurodivergent-Affirming SLT Assessment & Intervention | AutisticSLT

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Learn neurodiversity approaches. How to write assessment descriptors, casenotes and goals. Questions, checklists, a questionnaire download for your students.

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BMC Psychiatry 22, Article number: 251 (2022) Cite this article

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Abstract

Background

National clinical guidelines emphasise the need for good communication of information by clinicians to young people and their parent/carers about what to expect during transition into adult services. Recent research indicates that of young people in need of transition for attention deficit hyperactivity disorder (ADHD), only a minority experience continuity of care into adulthood, with additional concerns about quality of transition. This qualitative analysis explored the role that information plays in the transition from child to adult mental health services for young people with ADHD, from the perspectives of clinicians working in children's services.

Methods

Participants were recruited from National Health Service (NHS) Trusts located across the United Kingdom (UK), with varying service configurations. Twenty-two qualitative interviews were conducted with 15 paediatricians and seven psychiatrists working in child services and supporting young people with ADHD. The Framework Method was used to complete a thematic analysis of data related to the role of information in transitional care.

Results

Two themes were identified in relation to the role of information in supporting transition and promoting continuity of care. Information for clinicians; about adult mental health services, the young person and their ADHD, and exchanged between services. Sharing information with young people; about transition processes, self-management, to support service engagement, and tailored to be accessible to young people with ADHD. Clinicians in children's services reported variable access to information. Clear protocols and being able to communicate about ADHD as a long-term condition, were described as having a positive impact on the transition process.

Conclusions

These findings illustrate that clear information on the transition process, and communication of evidence based and up-to-date information on ADHD as a long-term condition are essential components for clinicians supporting transition into adult services. Information exchange can be supported through transition discussions with young people, and joint meetings between services Discussions should be accompanied by accessible resources for young people and parents/carers such as leaflets and websites. Further efforts should be focussed on enabling clinicians to provide timely and appropriate information to young people with ADHD to support transition.

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Background

Attention deficit hyperactivity disorder (ADHD) is a common neurodevelopmental disorder, characterised by inattention, hyperactivity, and impulsivity [ 4, 48]. Reviews of evidence suggest a worldwide prevalence of 5.3-7.1% in children and adolescents [ 32, 48], and 2.6-2.8% in adults [ 15, 44]. As many as two thirds of young people with ADHD continue to experience symptoms into adulthood [ 2]. A meta-analysis of follow-up studies of children with ADHD found that 15% continue to meet full diagnostic criteria at the age of 25 years, with a further 50% experiencing some degree of continued impairments and subthreshold symptoms [ 14]. However, in the United Kingdom (UK), the mixed methods "Children and Adolescents with ADHD in Transition between Children's and Adult Services" (CATCh-uS) study recently reported that very few young people with a clinically confirmed need for ongoing medication for their ADHD made a successful transition to adult services [ 21]. CATCh-uS was a mixed methods project involving three strands: a surveillance study examining the incidence of need for transition and successful transition; a study mapping adult ADHD services; and a qualitative study exploring the perspectives of young people, parents and clinicians [ 21].

Transition in health care services is defined as "a purposeful, planned process that addresses the needs of adolescents and young adults with chronic physical and medical conditions as they move from child-centred to adult-orientated health care systems" [ 7]. Young people with ADHD are one of the groups least likely to make a successful transition to adult mental health services, in what has been described as a 'failure of healthcare', complicated by a historical lack of service provision for adults with the condition [ 12, 41, 42, 51]. This is despite poor outcomes across multiple domains including work and education, relationships, criminal justice, and health, with attendant economic impact among those who prematurely stop their medication [ 10, 24, 40]. An additional challenge in ADHD relates to stigma and misunderstanding around the condition itself, even on the part of clinicians [ 16].

For these reasons, transition in ADHD has recently been the focus of concerted research and policy efforts, including the publication of NICE guidance on ADHD with specific recommendations on transition [ 30]. Multiple barriers and facilitators to healthcare transitions have been identified for young people with long term mental health conditions [ 13, 27, 31, 34, 45]. A systematic review of qualitative evidence on transition in ADHD reported on hurdles to accessing care (such as meeting referral thresholds), limitations of existing adult mental health services, and inadequate availability of services [ 34]. Identified facilitators to transition included greater flexibility around age boundaries between services, support from specialist adult ADHD services, and improved provision of information about adult services [ 34]. The CATCh-uS qualitative strand involved interviews with 144 individual stakeholders from across the UK, including patients, parent/carers, clinicians from child and adult services and general practitioners. The study identified four interrelated factors which could act as barriers or facilitators to continued treatment into adulthood [ 21]. Firstly, whether ADHD medication was viewed as required only for education, secondly, whether medication was viewed as beneficial, thirdly the extent of parental involvement, and fourthly, feeling prepared for transition and adult life with ADHD [ 21].

Whilst the qualitative strand in CATCh-uS was not specifically designed to explore the role of information in the process, information-centred themes were prominent in the interviews with young people and parents. Themes identified focused on the essential role of the parent/carer as a navigator and translator of information, and defined two specific types of information: about ADHD into adulthood, and about the transition itself [ 35].

Access to clear information is a central component of the provision of care as well as self-management for people with long-term conditions, and is essential for both patients and clinicians. Patients need information to maximise their engagement with services and to make the best use of their involvement with services, and clinicians need the relevant patient information and resources to ensure effective clinical management [ 1, 47]. There are certain junctures at which information in various forms can be particularly crucial. One of these is during the transition from child to adult health services, which often coincides with transitions in education, family life and identity. National Institute for Health and Care Excellent (NICE) guidance on transition [ 29] recommends that information is provided in a developmentally appropriate format to young people and their parents/carers about available support and adult services; also that information about the young person is communicated between services. Relevant and clear information can facilitate engagement with care, reduce uncertainty, and assist self-management and planning, at a stage when young people may be more prone to drifting away from services [ 5, 41, 42, 43]. Whilst accounts of transition from the patients' perspective (as discussed above) describe how the clinician is a key source of information in the transition process, little is known about how clinicians view the role of information in transition, their role as information-provider, and their own need for information.

This paper draws on an additional analysis of the CATCh-uS interviews with clinicians in children's services (Paediatric or Child and Adolescent Mental Health Services (CAMHS)), hereafter referred to as 'child/children's services', about their perspectives on the role of information in facilitating or impeding young people's transition to adult services (Specialist or Generic Adult Mental Health Services (AMHS)). The full findings of CATCh-uS, including an overview of facilitators of smooth transition are detailed in our report to the NIHR [ 21]. The aim of this paper is specifically to explore the perspectives of these clinicians on the roles of information in service transition for ADHD and how it affects the success of the process, and influences outcomes for young people, and also to provide recommendations for how information available to clinicians could be improved.

Methods

This paper presents a focused study on the role of information as reported by clinicians working in children's services, drawn from the large qualitative study of stakeholder experiences of the transition process in the CATCh-uS study.

Sampling and recruitment

Practitioners who took part in the CATCh-uS surveillance study and indicated that they were willing to take part in an interview about transition, were purposively sampled. Participants were from NHS children's services located in different geographical areas of the UK and represented a range of local adult ADHD service models (dedicated ADHD vs. generic Adult Mental Health). For full details of recruitment strategy please see the CATCh-uS report [ 21].

We anticipated that 20-25 interviews would be needed from each stakeholder group to reach data saturation. A mid-recruitment break (after approximately two-thirds of interviews were completed) was included to assess saturation level, identify novel themes and re-focus the sampling strategy if required. Decisions about sample size drew on experiences of previous studies on transition and wider methodological findings regarding the anticipated stage in data collection when data saturation is likely to occur [ 6, 26].

Interview procedure

All participants provided written informed consent, including for audio-recording of the interviews. Semi-structured interviews took place between October 2017 and November 2018, by telephone in order to increase flexibility and accessibility. All interviews were digitally voice-recorded and transcribed verbatim. Each recruited participant was assigned a unique identifier code. Interviews were on average 40 min in duration.

The topic guides for the interviews were developed using the study's qualitative strand research questions and covered practicalities related to transition, key elements of optimal transition, involvement of families and other services, and personal experience of failed, good and difficult transitions. Questions included "Do you feel you have been able to help the young person to make a sensible decision about what to do after this service/care stops?" and "Have you encountered cases where transition has been particularly difficult? What have been the issues? What steps were taken to resolve the difficulties?" Full topic guides are provided in the CATCh-uS report [ 21].

Data management and analysis

Interview recordings and transcriptions were stored on an encrypted hard drive. Once transcribed, interview data were managed using QSR International's NVivo12 qualitative data analysis software [ 36] and were stored securely and password protected.

For full details and findings of the initial analysis please see the CATCh-uS report [ 21]. A recurrent finding identified in this analysis was the significance placed by participants on information (or the lack thereof); both by young people and parents [ 35], as well as clinicians. Matrix summaries relating to information during the transition process were extracted and analysed further by AP. The first stage of analysis, completed by AP, started with 'indexing' a small sample of interviews, to gather an insight and overview of the data. A thematic framework was then created, building on relevant sections of the framework created for the main CATCh-uS report, that identified key concepts and was used to code all remaining interview data [ 17]. The next stage involved writing summaries of each interview for every code. This allowed for comparison, exploration and explanation of patterns emerging [ 38]. This method facilitates systematic and transparent data analysis, and enables researchers to identify patterns or commonalities, as well as contradictions in and between participants' accounts, so they can explore and test explanations for those patterns [ 39]. Refined themes were reviewed by SM and TND, and final themes and subthemes were then agreed [ 8]. See Tables 1 and 2.

Table 1 Theme 1. Information for clinicians

Table 2 Theme 2. Sharing information with young people

Ethics

Ethical approval for this element of the study was granted by NRES South Yorkshire Ethics Committee: Yorkshire & The Humber (REC Reference: 15/YH/0426) and the University of Exeter Medical School Research Ethics Committee (REC Application Number: 15/07/070).

Results

A total of 22 clinicians were interviewed from children's services. These were 15 paediatricians and seven child and adolescent psychiatrists. They were located across 11 regions of the UK and within a variety of local adult ADHD service models. Only one region, the North West, was not represented. The sample is described in greater depth in the NIHR CATCh-uS report [ 21].

Two themes were identified that represent key data in relation to information provision as part of health service transitions for young people with ADHD:

1. 1.
Information for clinicians

2. 2.
Sharing information with patients

These themes are summarised below, and presented in Tables 1 and 2, with a summary of sub-themes, and illustrative quotes. For a full and detailed description of each theme, please see supplementary material. Theme one, information for clinicians is about the information that clinicians working in children's services need in order to deliver practical elements of the transition process, and provide appropriate clinical advice, treatment, and care to young people with ADHD approaching the age of transition. Sub-themes include information about AMHS, information about the young person, and living with ADHD as a long-term condition. Also information exchange between services. Theme two, sharing information with patients is about the information clinicians reported sharing or wanting to share with young people to facilitate transition. This includes information about the transition process and what to expect. Other sub-themes included information about self-management into adulthood, relevant information to increase healthcare engagement, and tailoring information sharing methods to ensure young people with ADHD are able to access and understand key facts/concepts.

Recommendations on the types of information resources needed to support clinicians delivering transitional care were drawn from interview data. These include resources for direct use by clinicians, and for sharing with patients, and are presented in Fig. 1.

Recommendations for national provision of information to facilitate healthcare transitions for young people with ADHD

Discussion

Summary of findings

Clinicians in this study felt that accurate, tailored and easily available information is a critical element in the transition process for young people with ADHD, as reflected in the two themes presented in this paper: Information for clinicians themselves, and information shared with young people. Across these themes, clinicians discussed points of best practice around the accessibility of information and information sharing as a longer-term process.

Clinicians required up-to-date information and resources to share with young people, as well as understanding and awareness of the social context for their patient. If available, this allowed them to engage in a backwards-and-forwards flow of information with the young person. This flow of information was seen as facilitating self-management during transition, for example allowing young people to try out making decisions around medication and support and reviewing what happens afterwards.. Where information was not available, easily accessible or out-of-date, however, this was viewed as having consequences both for the process of transition between services, and for the young person's progress with understanding and managing ADHD into adulthood. We highlight some of the most important information gaps to fill in terms of policy, practice and research. These should also be viewed in the light of existing literature on other identified barriers and facilitators to transition for young people with ADHD, which are often interwoven and are likely to require integrated solutions [ 21, 27, 34, 45]. Identified barriers include cultural differences between child and adult services [ 5, 34], lack of shared transition planning between services [ 37], the unsupported 'default' role of primary care in treatment of adult ADHD [ 28], premature discharge from services [ 34], unmet need for accessible and age-appropriate services [ 33], the need to tackle stigma [ 11], variable attitudes towards medication [ 21, 50], and lack of training in and awareness of adult ADHD [ 18, 25].

Information for clinicians

Guidance often seems to take for granted that the clinician has the appropriate information to start with, and that clinicians then 'impart' the information to the young person or use it to negotiate and arrange care. For many clinicians in these interviews, this was clearly not the case, either for information about transition processes, or about ADHD as a long-term condition. Whilst some clinicians were aware of local transition protocols, for others, the lack of such protocols (or their lack of accessibility) made it much harder to negotiate the pathways and processes. Previous research suggested that many clinicians were not aware of their Trust's transition protocols [ 19]. Similarly, participants in our interviews often lacked information about the availability and the acceptance criteria of local AMHS, which supports the findings of the CATCh-uS mapping study that many respondents were not aware of existing (dedicated) ADHD services [ 33]. Some clinicians perceived there to be a lack of information available to them about ADHD as a long-term condition. This may be linked to the fact that ADHD itself has been a frequently contested diagnosis, particularly in adults, while health professionals still indicate a lack of confidence in management of, and even in the validity of, the diagnosis [ 20, 28, 46].

Information for young people

In these interviews the clinician's own uncertainties or gaps in up-to-date knowledge often translated into how and to what extent they shared, or were able to share, information with young people. Clinicians felt that the information they delivered and discussed with young people, as well as enabling access to AMHS, had a particularly important role in decisions around medication at the time of transition and in allowing young people to 'test' stopping treatment. Whilst many young people may no longer meet criteria for ADHD in adulthood, symptoms continue into adulthood for up to two thirds of children and adolescents, and a minority continue to meet full diagnostic criteria [ 2, 4]. As a result, as young people approach the age for transition there is likely to be a need for assessment and decision-making about any individual's need for longer-term care and support. For a clinician working in children's services, it will be necessary to use clinical judgement and consultation with the young person and their family to explore and test over time whether to reduce and stop treatment before adulthood, or whether ongoing treatment may be needed. These discussions and joint decisions need to be informed by a nuanced understanding of ADHD as a potential lifelong condition, and awareness of how presenting symptoms and behavioural challenges may develop and change as the young person approaches adulthood.

Therefore, conversations around treatment during transition were seen not just as a factual transfer of information but as a communication of possibility, risks and benefits, informed by dialogue with the young person, the clinician's experience and prior knowledge, and their understanding of individual needs and family context. It was also informed by the clinician's own views of the role of medication in ADHD. In some interviews, clinicians expressed uncertainties around the benefits of medication even where young people continued to have symptoms. However, it is also worth noting that a prominent theme in our parallel interviews with young people who had dropped out of CAMHS and re-entered services as adults, was that in retrospect they wished clinicians had emphasised the benefits of remaining on medication if warranted by symptoms and impairment rather than presenting the decision as a neutral choice [ 21].

Another important aspect was the sharing of information with young people about 'what to expect'. The differences between child and adult mental health services, young people's expectations of AMHS, and how young people actually experience AMHS has been a strong theme in prior research with clinicians and with young people [ 3, 5, 45]. Differences in parental involvement are often highlighted in our interviews; clinicians commented that transition to AMHS could, in fact, require greater parental involvement than care under child health services, owing to the need to organise and manage the volume and flow of information involved in transfer of care and the less 'holistic' approach of AMHS. When this is added to the difficulties inherent in ADHD with attention and information processing [ 49], it is clear that young people without an involved parent are likely to be at a significant disadvantage during the process of transition. This can further widen inequalities. Findings from our work with young people and parents underlines the importance of having a parent/carer or other supporter to seek, navigate and translate information about ADHD into adulthood, and transition between services, to facilitate engagement with services [ 21, 35].

Sharing information

Clinicians reported signposting young people onto other services and sources of information and advice, as well as advising young people on how they can get back in touch with services if they need to re-enter. Interestingly, this contrasts with accounts from qualitative research with young people, where many report a lack of information in terms of not knowing where to go, and not being aware of how they can re-enter services [ 21, 35]. These differing accounts may partially relate to the form and presentation of information shared; and what young people are able to understand and retain during healthcare appointments. Clinicians themselves voiced a need for evidence-based, good quality and consistent information that they can provide, and signpost young people to, in formats that are accessible; instead of using material not designed for ADHD or taken from other services. It is also worthwhile noting that some clinicians in this study reported advising young people that their GP would be able to provide advice and act as a portal to services. Whilst this may well be true in these individual cases, research with GPs suggests that primary care professionals often feel ill-equipped to take on such a role; and also needed better information about the condition and the support available [ 16, 28]. It is crucial that those whom young people approach for information are as well-informed as possible, as misinformation (however well-intentioned) can cause later distress for young people and families [ 35].

Strengths and limitations

This paper presents an analysis of a substantial number of interviews with clinicians from child services, across a range of different NHS Trusts and geographical areas. The sample was recruited as part of the CATCh-uS study, which had key research questions and topic guides built around the process of transition, with no specific focus on the role of information. Further themes may have been identified had we systematically enquired about the role of information. In our analysis however, it became clear that information was a significant topic with important implications for practice, meriting separate presentation. Future research could explore this issue more systematically.

Implications for practice and research

Our findings clearly suggest the need for efficient and simple ways of sharing information about transition in ADHD with clinicians. Adult ADHD remains one of the more contested conditions, affected by stigma and by under-provision of services [ 33], and this arguably warrants additional efforts being made to ensure that information is as easily available as possible. Information technology offers cost-effective methods of providing nationally available high-quality evidence-based information at the point of need, to support existing mechanisms of healthcare transition. Information on ADHD as a condition, tailored for each stakeholder group (clinicians in child and adult services, general practitioners, young people, and parent carers) may reduce the impact of some barriers to continuity of care. For example, nuanced information on how an adolescent with ADHD may continue to need treatment and support as an adult, may help to tackle stigma, reduce premature discharge from services, inform attitudes towards medication, and enhance awareness of adult ADHD. Routine and systematic provision of information about care pathways and locally available services to clinicians working in children's services would make it easier to prepare young people for what to expect in adult services, and help to highlight gaps in care, stimulating work to find solutions to enable continuity of care for the young person. There are likely to be roles for a number of different agencies to improve availability and quality of such information, such as NICE, ADHD charities, and NHS informatics. With the increasing use of online or digital systems within services, there is clearly scope for linking to central or regional portals or patient information management systems through which clinicians can access up-to-date information about the condition, and about available services. These systems could also use temporal flags with prompts for topics to be discussed with patients well in advance of the age boundary, in accordance with NICE guidelines.

Given the importance of decisions made at this life stage, it is crucial that clinicians have access to up-to-date evidence on the benefits and harms of medication to enable them to have discussions with young people about their treatment. There is much more to be known about outcomes for young people with ADHD and the optimal approach to management of the condition into adulthood and beyond, such as the longer-term effects of medication [ 22].

There may be a place for tools for clinicians to support young people's decision-making around transfer to AMHS and continuation of medication. Such patient decision aids have been developed for parents of children with ADHD [ 9], and for young people with other chronic conditions such as diabetes, e.g. Lawson et al. [ 23], but to our knowledge these aids have not been evaluated for young people with ADHD, representing an important avenue for co-creation and research. Although many clinicians will know their patients well, those in transition may sometimes be overlooked; therefore systems which can flag those who might be less well supported and smooth the flow of information could also be valuable. Our parallel paper [ 35] provides recommendations for accessible, co-created and trusted resources for young people. Research is also required to explore the most effective ways to share information that young people with ADHD can understand, retain, and use for self-management and to seek support if required. This may involve trialling information-based interventions and exploring their effectiveness in improving the outcomes of transition. NICE guidelines now emphasise the importance of the provision of information in an accessible format, as part of care for people with ADHD [ 30]. To facilitate such provision, NICE could produce or host information resources as part of their Tools and Resources website.

Conclusion

In conclusion, information plays an important role for clinicians caring for young people with ADHD approaching transition, enabling them to support, provide appropriate care, and inform the young person. This is perceived as having a clear link to smooth transition and improved outcomes for young people. Information flow and quality is too important to be left to chance and resource-poor local services. While clinical guidelines on transition and management of ADHD [ 29, 30] have been updated to highlight the importance of information provision, there remains much to be done to support clinicians in implementing these guidelines, and to avoid local variations in care where transition may depend to some extent on local expertise and knowledge. Our research adds to the case for investment in research, development, and nationally available materials for clinicians and patients.

Availability of data and materials

The datasets generated and/or analysed during the current study are not publicly available but are available from the corresponding author on reasonable request. Data is currently stored securely by the University of Exeter College of Medicine and Health.

Abbreviations

ADHD:

Attention Deficit Hyperactivity Disorder

AMHS:

Adult Mental Health Services

CATCh-uS:

'Children and Adolescents with ADHD in Transition between Children's and Adult Services' study

CAMHS:

Child and Adolescent Mental Health Services

GPs:

General Practitioners

NHS:

National Health Service

NICE:

National Institute for Health and Care Excellence

NIHR:

National Institute for Health Research

NRES:

National Research Ethics Service (now the Health Research Authority)

UK:

United Kingdom

References

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Acknowledgements

The authors would like to thank: the CATCh-uS study team, the CATCh-uS parent advisory group, the Study Steering Committee, the clinicians who participated in interviews, and the NHS Trusts who facilitated recruitment. This work would not have been possible without your help.

Funding

This study was part of a wider study CATCh-uS. It was funded by the National Institute for Health Research Public Health Research Programme (project number 14/21/52) and its development was supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care South West Peninsula.

These funders had no role in study design, data collection, data analysis, interpretation of data, or writing of this editorial. The views and opinions expressed therein are those of the authors and do not necessarily reflect those of the NIHR HS&DR Programme, NIHR, NHS or the Department of Health and Social Care.

Author information

Authors and Affiliations

1. University of Exeter, St Luke's Campus, Exeter, EX1 2LU, UK

Anna Price, Siobhan Mitchell, Astrid Janssens, Helen Eke, Tamsin Ford & Tamsin Newlove-Delgado

2. Department of Public Health, University of Southern Denmark, J. B. Winsløws Vej 9B, DK-5000, Odense C, Denmark

Astrid Janssens

3. Department of Psychiatry, University of Cambridge, Hershel Smith Building, Robinson Way, Cambridge Biomedical Campus, Cambridge, CB2 0SZ, UK

Tamsin Ford

Contributions

AP conceived and designed the analysis presented in this paper, with support from SM and TND. AP led the writing of the main manuscript with support from TND and SM. AP wrote the supplementary material, which was reviewed by AJ. TF and AJ designed the CATCh-uS qualitative study. AP, AJ and HE conducted interviews, and the original data analysis. All authors reviewed the final manuscript. The author(s) read and approved the final manuscript.

Corresponding author

Correspondence to Anna Price.

Ethics declarations

Ethics approval and consent to participate

All participants provided informed consent to participate in the study. Health Research Authority (HRA) approval - HRA-IRAS reference 159209. University of Exeter Medical School Ethics Committee (REC Application Number: 15/07/070).

All methods were carried out in accordance with relevant guidelines and regulations.

Consent for publication

Not applicable.

Competing interests

No authors have any competing interests to declare.

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Price, A., Mitchell, S., Janssens, A. et al. In transition with attention deficit hyperactivity disorder (ADHD): children's services clinicians' perspectives on the role of information in healthcare transitions for young people with ADHD. BMC Psychiatry 22, 251 (2022). https://doi.org/10.1186/s12888-022-03813-6
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Keywords

ADHD

Transition

Information

Qualitative

Adolescent

Mental health

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In transition with attention deficit hyperactivity disorder (ADHD): children's services clinicians' perspectives on the role of information in healthcare transitions for young people with ADHD - BMC Psychiatry

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Background National clinical guidelines emphasise the need for good communication of information by clinicians to young people and their parent/carers about what to expect during transition into adult services. Recent research indicates that of young people in need of transition for attention deficit hyperactivity disorder (ADHD), only a minority experience continuity of care into adulthood, with additional concerns about quality of transition.

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