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Self-determination is a life changer for the person and a game changer for the system. At its core is the revolutionary idea that people with disabilities are in charge of their own lives, not the professionals or systems that support them. We believe that self-determination will not only encourage individuals and families to "think outside the box" about the kinds of lives they could lead, but it will also stimulate discussion on how the traditional system can become more person- centered and provide more choice and control for the people they serve.

The Principles of Self-Determination

Freedom, which includes the ability of adults with developmental disabilities to exercise the same rights as all citizens; to establish, with freely chosen supporters, family and friends, where they want to live, with whom they want to live, how their time will be occupied, and who supports them; and, for families, to have the freedom to receive unbiased assistance of their own choosing when developing a plan and to select all personnel and supports to further the life goals of a minor child.

Authority, which includes the ability of a person with a disability, or family, to control a certain sum of dollars in order to purchase services and supports of their choosing.

Support, which includes the ability to arrange resources and personnel, both formal and informal, that will assist a person with a disability to live a life in his or her community that is rich in community participation and contributions.

Responsibility, which includes the ability of participants to take responsibility for decisions in their own lives and to be accountable for the use of public dollars, and to accept a valued role in their community through, for example, competitive employment, organizational affiliations, spiritual development, and general caring of others in their community.

Confirmation, which includes confirmation of the critical role of participants and their families in making decisions in their own lives and designing and operating the system that they rely on.

The Story of California's Self-Determination Law

In 2012, six ordinary people met and did an extraordinary thing. While at a restaurant across from the Burbank Airport, they sketched out a plan on the back of a napkin to pass a law for self-determination to ensure freedom, authority and choice to individuals with developmental disabilities. The six people included Judy Mark and Connie Lapin, parents and co-chairs of Government Relations of the Autism Society of Los Angeles; Michal Clark, parent and then executive director of a regional center that was part of the self- determination pilot project; Marnie Clark, self advocate; Harvey Lapin, parent and longtime disability activist; and Catherine Blakemore, Executive Director of Disability Rights California.

The six agreed that the developmental services system was broken and that change was needed. They were aware that the federal government, through its funding of community Medicaid services, was moving the states towards person-centered service models that allowed consumers more choice and control. Although California had a successful self-determination pilot program that began in 1998, attempts to pass legislation to expand this program had not yet been achieved.

The initial six formed "The Dream Team" but were soon joined by Allen Erenbaum, parent and attorney; April Lopez, parent and member of the State Council on Developmental Disabilities, Mark Polit, parent and SEIU staff, and Cathay Liu, parent and service broker in the pilot. There was clear agreement that the program would be voluntary and statewide, include diverse, underserved communities, and be open to all individuals with developmental disabilities served by regional centers. The team mobilized and went to work.

It was apparent that to succeed, a bipartisan effort was needed. In December 2012, Harvey Lapin

called Senator Bill Emmerson, a colleague in the dental profession, and asked him to have a conversation. Harvey and Connie met the Senator in his local district office in San Bernardino, where he readily agreed the plan was a significant bipartisan issue and offered to author the bill. Many wonderful legislators enthusiastically united over the effort and agreed to be co-authors, including Senator Jim Beall and Assemblymembers Bob Blumenfield, Wesley Chesbro and Holly Mitchell. The authors introduced Senate Bill 468.

Some groups thought that the bill had no chance of passage. But they underestimated the sheer will of the self-advocates and family members. No opposition challenged the bill as it moved through the Senate. SB 468 passed easily in the Senate Human Services Committee and unanimously on the Senate floor. As the bill moved into the California Assembly, however, those interested in keeping the status quo started to get active. No group ever officially came out in opposition to SB 468 - it would be politically incorrect to argue publicly against it - but some questioned the need for self- determination during a hearing in the Assembly Human Services Committee. Yet even those questions didn't damper the clear enthusiasm for the bill, and it passed without a single "no" vote.

The bill was then sent to the Appropriations Committee and put on "suspense," which means the cost of the program would have to be determined before moving forward. At that point, those wanting to maintain the status quo attempted some behind-the-scenes maneuvering and tried to make the case for a $6 million cost for the bill, which would have essentially killed it. But the authors and sponsors had compelling evidence - backed up by the Department of Developmental Services (DDS) - that the Self-Determination Program would actually bring in almost $3 million dollars a year in additional federal funds stemming from the match from the pilot participants. The bill passed unanimously out of the Appropriations Committee and on the Assembly floor.

It was then time to put pressure on Governor Brown to sign the bill. The Governor was known for vetoing bills with little explanation, so those same folks from the Burbank restaurant had one final hurdle. They reached out to thousands of self-advocates and family members to encourage them to let Governor Brown know the importance of self-determination to them. It was reported that the Governor's Office received more calls to sign Senate Bill 468 than any other health-related bill. Governor Jerry Brown signed this groundbreaking legislation into law on October 9, 2013. It was an incredible celebration for the disability community.

The credit for the passage of the Self-Determination Law must be shared with the hundreds of self-advocates and family members who made calls and wrote emails pushing for its passage, such as David Oster, a self-advocate who called the Governor multiple times every day. Great recognition must also be given to the tireless hours and commitment of Catherine Blakemore and Evelyn Abouhassan of DRC and the incredible guidance from DDS Director Terri Delgadillo. The disability community couldn't have asked for a better author than Senator Bill Emmerson, along with his amazing staff, Teresa Trujillo and Joe Parra, as well as other legislative staff who helped steer the bill, such as Mareva Brown, Peggy Collins, Lyn Shaw, and Sydney Kamlager. Also in

the legislature, the bill had essential support to push it over some significant hurdles from Assemblymember Mike Gatto, Dario Frommer, Bob Hertzberg, and Andrew Govenar.

Overview of California's Self-Determination Program

"The Dream Team" has remained passionately involved in the implementation of the law as members of the DDS Self-Determination Workgroup. The group began meeting in December 2013. It has often been a frustrating 5 1⁄2 years since the law was passed, but the Self-Determination Program is finally here! Unfortunately, none of the "Dream Team" members were selected for the phase-in of the program, but they remain committed to staying active. They want to ensure that the Self-Determination Program is successful so that, one day, their children, and every person with developmental disabilities in California, can benefit from freedom, choice and control over their lives.

California's Self-Determination Program (SDP) provides individuals with autism, cerebral palsy, epilepsy, intellectual disabilities, and other developmental disabilities and their families with more control and flexibility over the services and supports they need. Self-determination is a voluntary regional center program that provides participants with an individual budget, which they can use to purchase the services and supports they need to implement their person-centered plan (PCP) and Individual Program Plan (IPP). For example, participants and families may purchase services from traditional providers or local businesses, hire support workers directly, or negotiate unique arrangements with groups and individuals in their communities.

Eligibility
The SDP is based on a 20-year old pilot project in which almost 200 individuals participated in a test of self-determination in five regional centers. The pilot program has been a resounding success and, after many attempts, it is finally being expanded throughout California.

The Self-Determination Program will be phased in over three years. On October 1, 2018, DDS randomly selected the first 2,500 participants based on geographic and racial/ethnic diversity. On June 5, 2021, the program will be available to all eligible individuals on a voluntary basis with no limit on the number of participants.

To be eligible for the program, you or your family member must:
Implementation at Your Regional Center

Have a developmental disability and currently be receiving services from a California regional center OR be a new client of a regional center

Be over the age of three or, if under, be qualified for services through the Lanterman Act

Live in the community and have free choice in your life. You are not eligible if you live in a licensed long-term health care facility, unless you are using it to transition from that facility

Learn More about the Self-Determination Program

You can continue to participate in the Self-Determination Program even if you move to another regional center. If you voluntarily choose to leave the Self- Determination Program, you can go back into the traditional regional center system, but you cannot return to the SDP for at least twelve months.

Each regional center is required to have a Self-Determination Local Advisory Committee. They are responsible for oversight and monitoring progress of the Self-Determination Program and can make recommendations for improvement to DDS. They are mostly self-advocates and family members who are appointed by the regional centers and the regional offices of the State Council on Developmental Disabilities. The Clients' Rights Advocates of Disability Rights California are also a part of the committees. The committees' meetings must be put on the regional centers' websites, and everyone is welcome to attend. The local committees will be working with the regional centers to hold the orientations and ongoing trainings of the participants and the general community. The State Council on Developmental Disability also convenes a statewide advisory committee, made up of the chairs of the 21 local committees, to identify best practices, design effective training materials, and make recommendations for improvements in the Self-Determination Program.

Attend meetings of your regional center's Self-Determination Local Advisory Committee.

If you have been selected as a participant, you can start creating your person-centered plan before your orientation and hire an independent facilitator using regional center funds. Ask your service coordinator!

If you weren't selected as a participant in the first selection, there will be future random selections as some participants drop out of the program. If you didn't sign up for the lottery in the first round, you can be part of future random selections if you attend an informational meeting and have your name submitted.

Join the Disability Voices United's email list and Facebook page to find out about our activities and advocacy around the Self-Determination Program. Sign up at Disability Voices United.

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Self-determination is a life changer for the person and a game changer for the system. At its core is the revolutionary idea that people with disabilities are in charge of their own lives, not the professionals or systems that support them.

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What is Gestalt Language Processing? Is Your Child a Gestalt Language Learner?

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Autism Speaks does not provide medical or legal advice or services. Rather, Autism Speaks provides general information about autism as a service to the community. The information provided on our website is not a recommendation, referral or endorsement of any resource, therapeutic method, or service provider and does not replace the advice of medical, legal or educational professionals. Autism Speaks has not validated and is not responsible for any information, events, or services provided by third parties. The views and opinions expressed in blogs on our website do not necessarily reflect the views of Autism Speaks.

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Ted Hutman, Ph.D. is Assistant Clinical Professor in Psychiatry at the David Geffen School of Medicine at UCLA and a licensed clinical psychologist practicing in Santa Monica, CA.
A parent's guide to autism treatment and support

If you've recently learned that your child has or might have autism spectrum disorder, you're probably wondering and worrying about what comes next. No parent is ever prepared to hear that a child is anything other than happy and healthy, and an ASD diagnosis can be particularly frightening. You may be unsure about how to best help your child, or confused by conflicting treatment advice. Or you may have been told that ASD is an incurable, lifelong condition, leaving you concerned that nothing you do will make a difference.

While it is true that ASD is not something a person simply "grows out of," there are many treatments that can help children acquire new skills and overcome a wide variety of developmental challenges. From free government services to in-home behavioral therapy and school-based programs, assistance is available to meet your child's special needs and help them learn, grow, and thrive in life.

When you're looking after an autistic child, it's also important to take care of yourself. Being emotionally strong allows you to be the best parent you can be to your child in need. These parenting tips can help by making life with an autistic child easier.

Don't wait for a diagnosis

As the parent of a child with ASD or related developmental delays, the best thing you can do is to start treatment right away. Seek help as soon as you suspect something's wrong. Don't wait to see if your child will catch up later or outgrow the problem. Don't even wait for an official diagnosis. The earlier children with autism spectrum disorder get help, the greater their chance of treatment success. Early intervention is the most effective way to speed up your child's development and reduce the symptoms of autism over the lifespan.
[Read: Does My Child Have Autism?]
When your child has autism

Learn about autism. The more you know about autism spectrum disorder, the better equipped you'll be to make informed decisions for your child. Educate yourself about the treatment options, ask questions, and participate in all treatment decisions.

Become an expert on your child. Figure out what triggers your kid's challenging or disruptive behaviors and what elicits a positive response. What does your child find stressful or frightening? Calming? Uncomfortable? Enjoyable? If you understand what affects your child, you'll be better at troubleshooting problems and preventing or modifying situations that cause difficulties.

Accept your child, quirks and all. Rather than focusing on how your autistic child is different from other children and what he or she is "missing," practice acceptance. Enjoy your kid's special quirks, celebrate small successes, and stop comparing your child to others. Feeling unconditionally loved and accepted will help your child more than anything else.

Don't give up. It's impossible to predict the course of autism spectrum disorder. Don't jump to conclusions about what life is going to be like for your child. Like everyone else, people with autism have an entire lifetime to grow and develop their abilities.

Helping your child with autism thrive tip 1: Provide structure and safety

Learning all you can about autism and getting involved in treatment will go a long way toward helping your child. Additionally, the following tips will make daily home life easier for both you and your child with ASD:

Be consistent. Children with ASD have a hard time applying what they've learned in one setting (such as the therapist's office or school) to others, including the home. For example, your child may use sign language at school to communicate, but never think to do so at home. Creating consistency in your child's environment is the best way to reinforce learning. Find out what your child's therapists are doing and continue their techniques at home. Explore the possibility of having therapy take place in more than one place in order to encourage your child to transfer what he or she has learned from one environment to another. It's also important to be consistent in the way you interact with your child and deal with challenging behaviors.

Stick to a schedule. Autistic children tend to do best when they have a highly-structured schedule or routine. Again, this goes back to the consistency they both need and crave. Set up a schedule for your child, with regular times for meals, therapy, school, and bedtime. Try to keep disruptions to this routine to a minimum. If there is an unavoidable schedule change, prepare your child for it in advance.

Reward good behavior. Positive reinforcement can go a long way with children with ASD, so make an effort to "catch them doing something good." Praise them when they act appropriately or learn a new skill, being very specific about what behavior they're being praised for. Also look for other ways to reward them for good behavior, such as giving them a sticker or letting them play with a favorite toy.

Create a home safety zone. Carve out a private space in your home where your child can relax, feel secure, and be safe. This will involve organizing and setting boundaries in ways your child can understand. Visual cues can be helpful (colored tape marking areas that are off limits, labeling items in the house with pictures). You may also need to safety proof the house, particularly if your child is prone to tantrums or other self-injurious behaviors.

Tip 2: Find nonverbal ways to connect

Connecting with an autistic child can be challenging, but you don't need to talk-or even touch-in order to communicate and bond. You communicate by the way you look at your child, by the tone of your voice, your body language - and possibly the way you touch your child. Your child is also communicating with you, even if he or she never speaks. You just need to learn the language.

Look for nonverbal cues. If you are observant and aware, you can learn to pick up on the nonverbal cues that autistic children use to communicate. Pay attention to the kinds of sounds they make, their facial expressions, and the gestures they use when they're tired, hungry, or want something.

Figure out the motivation behind the tantrum. It's only natural to feel upset when you are misunderstood or ignored, and it's no different for children with ASD. When children with ASD act out, it's often because you're not picking up on their nonverbal cues. Throwing a tantrum is their way of communicating their frustration and getting your attention.
[Read: Autism Behavior Problems]
Make time for fun. A child coping with ASD is still a child. For both autistic children and their parents, there needs to be more to life than therapy. Schedule playtime when your child is most alert and awake. Figure out ways to have fun together by thinking about the things that make your child smile, laugh, and come out of her/his shell. Your child is likely to enjoy these activities most if they don't seem therapeutic or educational. There are tremendous benefits that result from your enjoyment of your child's company and from your child's enjoyment of spending unpressured time with you. Play is an essential part of learning for all children and shouldn't feel like work.

Pay attention to your child's sensory sensitivities. Many children with ASD are hypersensitive to light, sound, touch, taste, and smell. Some children with autism are "under-sensitive" to sensory stimuli. Figure out what sights, sounds, smells, movements, and tactile sensations trigger your kid's "bad" or disruptive behaviors and what elicits a positive response. What does your child find stressful? Calming? Uncomfortable? Enjoyable? If you understand what affects your child, you'll be better at troubleshooting problems, preventing situations that cause difficulties, and creating successful experiences.

Tip 3: Create a personalized autism treatment plan

With so many different treatments available, it can be tough to figure out which approach is right for your child. Making things more complicated, you may hear different or even conflicting recommendations from parents, teachers, and doctors.

When putting together a treatment plan for your child, keep in mind that there is no single treatment that works for everyone. Each person on the autism spectrum is unique, with different strengths and weaknesses.

Your child's treatment should be tailored according to their individual needs. You know your child best, so it's up to you to make sure those needs are being met. You can do that by asking yourself the following questions:

What are my child's strengths - and their weaknesses?

What behaviors are causing the most problems? What important skills is my child lacking?

How does my child learn best - through seeing, listening, or doing?

What does my child enjoy - and how can those activities be used in treatment and to bolster learning?

Finally, keep in mind that no matter what treatment plan is chosen, your involvement is vital to success. You can help your child get the most out of treatment by working hand-in-hand with the treatment team and following through with the therapy at home. (This is why your well-being is essential!)

A good treatment plan will:

Build on your child's interests.

Offer a predictable schedule.

Teach tasks as a series of simple steps.

Actively engage your child's attention in highly structured activities.

Provide regular reinforcement of behavior.

Involve the parents.

Choosing autism treatments

There are many different options and approaches to ASD treatment, including behavior therapy, speech-language therapy, physical therapy, occupational therapy, and nutritional therapy.

While you don't have to limit your child to just one treatment at a time, it's unlikely you'll be able to address everything at once. Instead, start by focusing on your child's most severe symptoms and pressing needs.
[Read: Autism Treatments, Therapies, and Interventions]
Tip 4: Find help and support

Caring for a child with autism can demand a lot of energy and time. There may be days when you feel overwhelmed, stressed, or discouraged. Parenting isn't ever easy, and raising a child with special needs is even more challenging. In order to be the best parent you can be, it's essential that you take care of yourself.

Don't try to do everything on your own. You don't have to! There are many places that families of children with ASD can turn to for advice, a helping hand, advocacy, and support:

ADS support groups - Joining an ASD support group is a great way to meet other families dealing with the same challenges you are. Parents can share information, get advice, and lean on each other for emotional support. Just being around others in the same boat and sharing their experience can go a long way toward reducing the isolation many parents feel after receiving a child's diagnosis.

Respite care - Every parent needs a break now and again. And for parents coping with the added stress of ASD, this is especially true. In respite care, another caregiver takes over temporarily, giving you a break for a few hours, days, or even weeks.
[Read: Respite Care]
Individual, marital, or family counseling - If stress, anxiety, or depression is getting to you, you may want to see a therapist of your own. Therapy is a safe place where you can talk honestly about everything you're feeling-the good, the bad, and the ugly. Marriage or family therapy can also help you work out problems that the challenges of life with an autistic child are causing in your spousal relationship or with other family members.

Free U.S. government services for children with autism

Under the U.S. federal law known as the Individuals with Disabilities Education Act (IDEA), children with disabilities-including those with ASD-are eligible for a range of free or low-cost services. Under this provision, children in need and their families may receive medical evaluations, psychological services, speech therapy, physical therapy, parent counseling and training, assisted technology devices, and other specialized services.

Children under the age of 10 do not need an autism diagnosis to receive free services under IDEA. If they are experiencing a developmental delay (including delays in communication or social development), they are automatically eligible for early intervention and special education services.

Early intervention services (birth through age two)

Infants and toddlers through the age of two receive assistance through the Early Intervention program. In order to qualify, your child must first undergo a free evaluation. If the assessment reveals a developmental problem, you will work with early intervention treatment providers to develop an Individualized Family Service Plan (IFSP). An IFSP describes your child's needs and the specific services he or she will receive.

For autism, an IFSP would include a variety of behavior, physical, speech, and play therapies. It would focus on preparing autistic kids for the eventual transition to school. Early intervention services are typically conducted in the home or at a child care center.

To locate local early intervention services for your child, ask your pediatrician for a referral or use the resources listed in the "Get more help" section at the end of the article.

Special education services (age three and older)

Children over the age of three receive assistance through school-based programs. As with early intervention, special education services are tailored to your child's individual needs. Autistic children are often placed with other developmentally delayed kids in small groups where they can receive more individual attention and specialized instruction. However, depending on their abilities, they may also spend at least part of the school day in a regular classroom. The goal is to place kids in the "least restrictive environment" possible where they are still able to learn.

If you'd like to pursue special education services, your local school system will first need to evaluate your child. Based on this assessment, an Individualized Education Plan (IEP) will be drafted. An IEP outlines the educational goals for your child for the school year. Additionally, it describes the special services or supports the school will provide your child in order to meet those goals.

Know your child's rights

As the parent of a child with ASD, you have a legal right to:

Be involved in developing your child's IEP from start to finish

Disagree with the school system's recommendations

Seek an outside evaluation for your child

Invite anyone you want-from a relative to your child's doctor-to be on the IEP team

Request an IEP meeting at any time if you feel your child's needs are not being met

Free or low-cost legal representation if you can't come to an agreement with the school

Caring for a child with autism when you are autistic

Research indicates that there is a genetic component to autism. However, many parents only discover they're autistic when they research and obtain a formal diagnosis for their own child. If you're autistic, you might face unique challenges when it comes to raising children who are also neurodivergent. Here are a few tips that may help:

Don't hide your identity. Let your child get to know the real you. If you have certain quirks, such as repetitive behaviors or unusual body movements, don't feel pressured to mask them in front of your child. By being yourself, you're encouraging your autistic child to be themselves around you and creating an opportunity to bond over your similarities. You can also talk with your child about how neurotypical individuals may react to your behaviors and how to handle negative reactions. Aim to offer the type of guidance you could've used when you were young.

Remember to care for yourself. Caring for a child can be challenging if you struggle with sensory needs or require a highly structured lifestyle. For example, if you're sensitive to sounds, a crying child may be a constant source of stress and discomfort. A child's sudden tantrums can make it hard for you to stick to a consistent schedule, creating further frustration. To protect your own sense of well-being, it's important for you to adopt coping habits that help reduce your stress in these types of situations.
[Read: Autism in Adults: Recognizing the Signs, Living with a Diagnosis]
If certain tasks seem overwhelming, look to other people for support. For example, if communicating with doctors and teachers poses a challenge, a parenting mentor or other parents with autism might be able to help you come up with solutions.

Build on your strengths. Everyone has specific strengths, and you're no exception. Consider how your skills and talents can help you establish a supportive household for your child. Do you excel at visual thinking or design? Create educational posters for your child. Are you able to focus for long periods of time? Use that focus to research and study up on parenting practices and coping strategies. Are you good at problem-solving? Use your creativity and out-of-the-box thinking to overcome challenges around the house.

Be patient with yourself and your child. Be willing to accept that you both have plenty of time to grow and learn. You might experience some setbacks. Perhaps, you lose your temper and feel ashamed by your reaction. Or maybe your child has a hard time fitting in with peers when they start school. Resolve to learn from bad experiences and find solutions, even if you have to make multiple attempts. When one of you does make progress, remember to acknowledge the growth. Offer your child praise and celebrate your personal successes as well.

Ted Hutman, Ph.D. is Assistant Clinical Professor in Psychiatry at the David Geffen School of Medicine at UCLA and a licensed clinical psychologist practicing in Santa Monica, CA.

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Helping Your Child with Autism Thrive - HelpGuide.org

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Does your child have autism? As a parent, you can make a big difference in your child's life. These tips can help.

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There are approximately 62,000 individuals in Utah with Autism or 2% of the population. Approximately 32,000 individuals with Autism in Utah are transition-aged youth or adults (≥14-years-old). An estimated 3,500 adults with Autism require significant supports.

Transitioning into adulthood for individuals with Autism Spectrum Disorder can be an overwhelming process. There are so many things to decide in coordination with, and on behalf of your young adult. Transition decisions are as varied as those on the Autism Spectrum disorder. We've all heard the adage: "You've met one person with autism, you've met ONE person with autism." The same adage relates to transition into adulthood. There is no ONE way, no ONE set of circumstances, and no ONE set of decisions to make. This section will provide you with resources that may be helpful as you map your pathway into the future. What areas does Transition Planning cover? The Utah Parent Center is a great resource ~ https://utahparentcenter.org/transition-to-adult-life/

The Journey to Adulthood: What Parents Need to know about puberty and sexuality ~ http://www.utahparentcenter.org/journey-to-adulthood-video/

1. Have you applied for DSPD services (also know as the waiting list) Start the intake process here: https://dspd.utah.gov/intake-process/

2. Many of us have learned that a Lagoon Pass is not considered a legal form of identification. You will need proper identification to enter federal buildings, at Doctors offices and for evaluations. Now is the time to obtain a State Identification Card: https://dld.utah.gov/license-permit-idcard/identification-card/

Visit your local Utah Department of Public Safety Driver License Division office in person and:

Complete an ID card application (Form DLD6A).

Provide proof of your identity/legal presence with documents such as your: ○ Valid U.S. passport. ○ U.S. birth certificate.

Provide proof of your Social Security number with documents such as a: ○ Social Security card. ○ W2 form. ○ 1099 form.

Provide 2 documents that prove your Utah residency, with documents including: ○ Bank statements. ○ Rental agreements. ○ Court documents.

Provide proof of your name change (if applicable), such as your: ○ Marriage certificate. ○ Divorce papers.

Pay the $18 fee, or $13 if you have a disability.

Have your photo taken.

A parent or guardian must sign your application if you are under 16 years old.

3. Open a checking account with the young adult as the primary account, and a parent as the designated payee. You will need this account information before you can apply for Social Security Income at the age of 18. It will be easier to get this account before the young adult turns 18 as you may have to wait until guardianship has been completed if you wait until after your young adult has turned 18. Remember the young adult has to be the primary name on the account.

4. If you receive paperwork from the Division of Workforce Services (generally received a few weeks before the young adults 18th birthday) sign and date the forms before his/her 18th birthday. Once the young adult turns 18 you are no longer considered a guardian, and will not be able to sign the forms on behalf of your young adult.

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There are approximately 62,000 individuals in Utah with Autism or 2% of the population. Approximately 32,000 individuals with Autism in Utah are transition-aged youth or adults (≥14-years-old). An estimated 3,500 adults with Autism require significant supports. Adults with Autism making the news: Is the US prepared for a growing number of adults with Autism?

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Utah Parent Center Transition to Adult Life

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Utah Parent Center Transition to Adult Life

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Life is full of transitions, and one of the more remarkable ones occurs when students get ready to leave high school and go out in the world as young adults. When the student has a disability, it's especially helpful to plan ahead for that transition. In fact, the Individuals with Disabilities Education Act (IDEA) requires it.

Many different individuals come together to help the student plan for transition. Typically, transition planning is handled by members of the IEP team, with other individuals becoming involved as needed. It's important to involve a variety of people who will bring their unique perspectives to the planning table. The team draws upon the expertise of the different members and pools their information to make decisions or recommendations for the student.

Transition goals should be written into your student's IEP in the year of their 14th birthday. IDEA also requires that the student participate or if unable, the student's input be included. This is an important time of life where IEP goals and services should be geared to preparing youth for adult life.
(Adapted from information from Center for Parent Information & Resources and NICHY legacy resources and Below you will find a variety of information on transition relevant topics. Transition To Adult Life Handbook: USBE Special Education Rules Transition from School to Adult Life: A Parent Resource Book Transition To Adult Life Information:
De 'NO' Saber a 'SABER' Dónde - Una Guía Paternal Para La Transición a la Vida Adulta (Más información por venir)

The following series of topics will provide information to help parents and young adults understand the transition process from school to adult life and services. Click on each category for more information.
Community Involvement
Information on self-advocacy, housing, recreation opportunities, service opportunities, supports for adults with disabilities, and transition from high school

Ideas and resources to help facilitate involvement in the community

Information on preparing for, finding, and keeping a job
General Transition Information
Ways the whole family can support the individual with a disability

General Information on a wide range of topics

Rights transfer to your child as soon as he/she turns 18, unless you obtain guardianship. Learn about the different types of guardianship and the process of obtaining it.
Person Centered Planning
Information on the different types of living accommodations for individuals with disabilities

Information and handouts to assist parents and students in engaging in person centered planning.

There are many options for higher education for individuals with disabilities. These information sheets give information to help you choose a school and be prepared to ask for accommodations to help your youth be successful.
Self-Advocacy/Self-Determination
Information on how to participate in recreation opportunities in the community
Supported Decision Making
Learning how to speak up for yourself, ask for necessary accommodations, and be in control of your life is important for an individual with a disability. These information sheets will help you learn how to take charge and be part of the decision-making process.

This guide will give you ideas on five different areas of Supported Decision Making.
Transition Preparation in Middle and High School
"My Voice Counts" was designed and created by the Utah Advocates as Leaders, Self Advocacy Speaker's Network. The speakers of the network researched and wrote this guide to help self determined people think about ways in which their voices can be heard when making both simple and hard decisions.
Vocational Rehabilitation
Learn what you can do while still in school to prepare for the transition to adult life.
Transition To Adult Life Video Modules:
Vocational Rehabilitation (VR) is a program that helps eligible Utah citizens living with disabilities to maintain, regain, or enter competitive employment.
Transition Action Guide From The Utah State Board Of Education:
The Transition to Adult Life video is available in both English and Spanish versions.

Life is full of changes. Many changes will happen smoothly, and they are hardly noticed. Other changes aren't so smooth, and require planning and preparation. high school students have dreams for their futures and what they will do. This is the beginning of adulthood and it is an exciting time, full of opportunity, decisions, and choices. The student is not alone in this process. Key supporters and resources are available, and should be utilized, to maximize the student's opportunities.

This Transition Action Guide has been prepared to provide information to these key participants in the process of planning by teams for the transition from school to adult life for students with disabilities. In this guide you will find the requirements under the special education law for transition and principles of transition plan development. Additional sections of the guide are designed to address the unique roles, responsibilities, and expectations for each of the potential transition team members. Finally, you will find a glossary, resource information, and planning forms.

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Transition to Adult Life/Adult Services - Utah Parent Center

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Life is full of transitions, and one of the more remarkable ones occurs when students get ready to leave high school and go out in the world as young adults. When the student has a disability, it's especially helpful to plan ahead for that transition.

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Autism Speaks is committed to providing the autism community with resources to meet each person and family's unique needs throughout every stage of life. To help with your search for support, we have organized our resources, information, expert advice and personal stories by category.

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Gestalt Language Processing - AssistiveWare

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Gestalt Language Processing (GLP) is a form of language development that starts with whole memorized phrases to single words. Read more on to better understand gestalt language processing and how to support gestalt language processors.

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In this episode we deeply explore how therapists misunderstand kids who communicate using scripts, how traditional approaches just don't work to support their language acquisition, and a totally new framework we can all use to support them in a meaningful way. Our guest, Alexandria Zachos, is a speech-language pathologist who has presented at ASHA and all over the world on delayed echolalia and gestalt language processing. She owns a private practice in Illinois called Social Butterfly Speech Therapy and runs Meaningful Speech, where she teaches an online course on gestalt language processing and shares tons of absolutely transformative content on social media. You can check out Alex's online course at bit.ly/gestaltcourse.

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delayed echolalia & gestalt language processors with alexandria zachos

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‎Two Sides of the Spectrum: Delayed Echolalia & Gestalt Language Processors with Alexandria Zachos on Apple Podcasts

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In this episode we deeply explore how therapists misunderstand kids who communicate using scripts, how traditional approaches just don't work to support their language acquisition, and a totally new framework we can all use to support them in a meaningful way. Our guest, Alexandria Zachos, is a spee...

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PBS Kids has been a leader in autism awareness, developing original programming for television, web, and mobile platforms. Learn about the children's program and find links to games for kids and companion resources for parents and educators.

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"From birth to 5 years, your child should reach milestones in how he plays, learns, speaks, acts and moves. Track your child’s development and act early if you have a concern." - The Centers for Disease Control and Prevention

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Centers for Disease Control and Prevention

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Skills such as taking a first step, smiling for the first time, and waving "bye bye" are called developmental milestones. Children reach milestones in how they play, learn, speak, act, and move.

Click on the age of your child to see the milestones:

"Learn the Signs. Act Early." materials are not a substitute for standardized, validated developmental screening tools.

Special acknowledgments to the subject matter experts and others who contributed to the review of data and selection of developmental milestones, especially Paul H. Lipkin, MD, Michelle M. Macias, MD, Julie F. Pajek, PhD, Judith S. Shaw, EdD, MPH, RN, Karnesha Slaughter, MPH, Jane K. Squires, PhD, Toni M. Whitaker, MD, Lisa D. Wiggins, PhD, and Jennifer M. Zubler, MD.
Sincere gratitude to Natalia Benza, MD and José O. Rodríguez, MD, MBA for their thoughtful review of the Spanish-language translation of these milestones.

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“learn the signs. act early.” milestones

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Developmental milestones are things most children can do by a certain age. Track your child's milestones and talk with your child's doctor at every visit about the milestones your child has reached

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Find Autism Friendly Events, Walks, and other events in your community.

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Looking for at-home learning activities for kids with autism? Browse activities by area of interest by clicking on a link below.

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Recreation is about activities and experiences which produce feelings of enjoyment and satisfaction. They give all of us opportunities to express creativity, achieve and master new skills.

Recreation can be particularly important for people with autism, drawing on opportunities to practice social skills, physical aptitude and increase motivation. These activities can provide the basis for increased self-confidence for your child.

Participation in recreation and leisure activities allows individuals with autism to learn skills specific to a particular sport or activity. But more importantly, participation in these programs also helps improve more general skills that can be applied in settings like school and work. So progress can be seen not just in the specific programs, but in other areas of life as well.

The Benefits Outweigh the Effort it Takes to Put it Together!

Recreation is important in promoting inclusion and quality of life.

Increases self-esteem and confidence.

Gives people the opportunity to make their own choices.

Provides satisfaction, enjoyment and pleasure.

Enables individuals with autism to become involved and feel like a part of their community.

Provides the opportunity to gain and develop new contacts and friends.

Sports and exercise programs can improve physical and mental health.

Reduces reliance on parents and other adults.

Increases independence which leads to increased opportunities.

Three Frequently Asked Questions about Recreation Activities for Children with Autism

1) How do I figure out what my child enjoys?

Work within the context of a your child's skills and interests. Exposure, exposure, exposure! Give your child the opportunity to try multiple activities for a period of time to see if something particular clicks with them. Children might have limited interests, so getting them involved in recreational activities can sometimes require expanding traditional ideas of leisure. Often times, leisure skills must be specifically taught to individuals with autism. Teaching these skills to your children will increase their confidence and as a result make them more interested in joining recreational programs, clubs or teams. You can also use technology to help you figure it out. The Wii system provides sporting activity simulations that can bridge the gap between your child's interest in video games and real world activities.

2) How do I deal with a situation involving recreation that goes bad?

No matter how much you want a recreational activity to work, there is always the chance that it won't. You may run into difficult or uncomfortable situations that you cannot change. Planning ahead and being prepared with an alternate plan is important. You may not get the support you need to fully integrate your son/daughter at the local YMCA swim team, but another plan might be to have your child and a sibling set up races that allow both kids to feel successful.

Receiving support from other parents of children with autism who have similar experiences can also be incredibly helpful. You can offer each other suggestions about what has worked for you and before long, you could be laughing about an experience gone bad that only a day before was upsetting to you. Visit the Autism Speaks Facebook page to connect with other parents of children with autism.

3) What are some examples of recreational activities for children with autism?

The social component of some recreational and leisure activities might make some activities more fulfilling and enjoyable for your children with autism.

Hobbies such as collecting stamps, playing cards or board games, drawing and photography can also provide opportunities for enjoyment, as well as increased self-confidence and motivation individuals on the spectrum.

Individual sporting activities such as Track, Skiing, Hiking, Golf, Cycling, or Cross-Country allow individuals with autism to participate in recreation without social interactions that might cause stress.

Some communities have autism-specific sports teams that can provide the support your child needs to participate in a team sport like baseball or hockey. For more information, visit the American Special Hockey Association or the All Play Miracle Baseball League.

Where to Get Help?

Recreation therapists, also referred to as therapeutic recreation specialists, provide treatment services and recreation activities for individuals with disabilities. Using a variety of techniques, including arts and crafts, animals, sports, games, dance and movement, drama, music and community outings, therapists improve and maintain the physical, mental and emotional well-being of their clients. Recreation therapists can also help individuals reduce depression, stress and anxiety, build confidence, and socialize effectively so that they can enjoy greater independence. In addition, therapists help people with disabilities integrate into the community by teaching them how to use community resources and participate in recreational activities.

Resources

Leading the Way: Autism-Friendly Youth Organizations
This guide developed by Autism Speaks helps recreation programs and other youth organizations better include and support participants with autism.

10 Tips to Help Your Child Find the Right Recreation Program
From the Autism Speaks Autism Response Team

AMC Sensory Friendly Films
In partnership with The Autism Society, we bring AMC Sensory Friendly Films to families affected by autism on a monthly basis to select communities.

Challenger Baseball
Challenger Baseball is a place where kids with special needs get the chance to come together as a team and be cheered on to greatness.

POP Warner Challenger Football League
The mission of the Pop Warner Challenger Division is to bring the Pop Warner experience to those special needs individuals.

US Youth Soccer TOPSoccer (The Outreach Program for Soccer) is a community-based training and team placement program for young athletes with disabilities, organized by youth soccer association volunteers.

Special Olympics
Special Olympics is where athletes with intellectual disabilities celebrate and are celebrated for their accomplishments.

Scouts with Special Needs
The basic premise of Scouting for youth with special needs is that every boy wants to participate fully and be respected like every other member of the troop.

YMCA
The Y is an inclusive organization of men, women and children joined together by a shared commitment to nurturing the potential of kids, promoting healthy living and fostering a sense of social responsibility.

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Recreation is about activities and experiences which produce feelings of enjoyment and satisfaction. They give all of us opportunities to express creativity, achieve and master new skills. Recreation can be particularly important for people with autism, drawing on opportunities to practice social skills, physical aptitude and increase motivation.

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This post is from Mama Fry. This blog was originally posted on her blog "Autism with a side of fries". You can follow her blog on Facebook and Twitter @FrenchFryInc.

Welcome to Club Spectrum! You didn't want to be here. Don't feel bad about that. No one signs up for this gig. Think of it this way - at least you now know what the Hell is going on. Better than not knowing at all. Mama Fry ain't no expert, but I do have some tips that help you from going crazy.

1) Pace yourself.

You are about to start a never-ending marathon. Know when to take a break. Embrace the couch and some bad TV. Or if you are one of those gym goers, do that. Avid reader? Go fire up that Kindle or go old school and buy a few books. You're going to have a lot of time in therapy waiting rooms. Might as well enjoy reading some check-your-brain-at-the-door novels. Know it's okay to get absolutely nothing done on some days. Or weeks.

2) Get off the Internet.

It can scare the crap out of you. Seriously, stop playing "Dr. Autism Google." You're looking for the autism cure needle in a Internet haystack. Step away from the search engine.

3) Get on the Internet.

I know, opposite advice. Here's the twist. Get on social networking sites. Talk to other parents. Get to know them. Not just what they did to treat X, Y and Z. You'll get a better understanding if those choices are right for you. Autism can make parents feel very isolated. Sometimes it is hard to get out and network. Facebook, Twitter and online groups are awesome. Mainly because when you are in the dark on your kid's iPad hoping like heck the melatonin will kick in soon, you can chat away. (Don't you go Googling "melatonin" yet. You read this all first, buddy!). Autism parents/caregivers are always awake somewhere on the planet.

4) Be prepared to hear a lot of advice you did not ask for.

Warning: it never ends. I find sarcasm and raising my eyebrows over my glasses helps a lot.

5) Respect your elders in the ASD world.

Now don't go taking their world as gospel but recognize what they do works for them. You'll see why as you earn your stripes. The kiddo is 8, and we've been dealing with all things autism since he was younger than 2. Trust me, newb, what you are telling me to try, we've done. Seriously, do you really want to be the type of person I just described in item number four? Don't be that know-it-all parent out the gate. Remember they have been sleep deprived much longer than you. They will be quick to shut you down.

6) Accept the fact that you are going to try stuff that is totally not going to work.

That miracle thingie you just read about in a chat group won't do jack all for your kid. Meanwhile every other kid who has, is thriving. It's the luck of the draw with this, folks. You meet one kid with autism, you have only met one kid with autism. Some cures/therapy/meds will be duds.

7) Autism is effing expensive.

So when Grandma or Uncle Frank wants to know what your lovey wants for their birthday, CASH IS KING! Don't be afraid to ask for therapy and/or lessons for something as gifts. These folks care about you and your kid. They'll be happy to know what they bought is actually getting used, not sitting around collecting dust.

8) Accept that some folks who buy gifts for your kid won't do the above.

You're going to get a lot of gifts that your kid won't even be remotely interested in. They meant well. They knew it was a hot toy. Save it. You never know. Maybe in a year or two, your kid might like it. Or donate it. Regift it. Return it for therapy cash.

9) Be open to doing stuff you think is ridiculous.

You really just don't know what your kid is going to respond to. Give it an honest college try before you realize if it's a hit or a miss. This means diet, meds, etc.

10) Take your kid out everywhere.

I'm serious. It may be small trips at first but it is the best thing you can do. You're teaching them coping skills. Life happens. People have to food shop, go to the bank, post office, etc. You would be doing it anyway if your kid didn't have autism. Know their limits of course. Baby steps first. Today, it's a trip to buy milk. Another time, maybe it's a trip to the pet store and the library. Life from now on will take military-like planning. Warn them what's coming, but go about your business. They smell fear. Seriously, the more panicked you are, they will turn that dial to "11."

11) Allow yourself a pity party.

Moan, cry, rant and rave and do it when you need to. More than once. Just remember you still have a kid that needs you. So don't dwell in it too long. If you find yourself doing it too far too frequently, know when to ask for help. Be it from a partner, family member, friend or doctor. Yes, this isn't what you planned, but it's here. So now what? Exactly.

This isn't about getting through it to an end point. This is your life now. This is your new normal. I can't promise it will get easier. You will just get better at dealing with it. Be it through humor, prayer, yoga, crafting, blogging or a thousand other escapism activities. You will do this. You can do this. Remember for as hard as you are working, so is your child. So now and then, relax and just order another side of fries.

Download the free Autism Speaks 100 Day Kit for parents of newly-diagnosed children

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11 Tips for New Autism Parents | Autism Speaks

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This post is from Mama Fry. This blog was originally posted on her blog " Autism with a side of fries". You can follow her blog on Facebook and Twitter @FrenchFryInc. Welcome to Club Spectrum! You didn't want to be here. Don't feel bad about that. No one signs up for this gig.

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How You Can Help Your Child Find and Keep Employment

As a parent, you may often worry about your son or daughter's future - especially when it comes to employment.

Having a job or a career often does not come easily to many adults on the autism spectrum. The following information will give you guidance on how to support your son or daughter during the journey for employment.
Your role can include:

Helping your son or daughter figure out their strengths and challenges

Encouraging your son or daughter to contact their local vocational rehabilitation office

Helping them network

Teaching them how to advocate for themselves

Giving them encouragement

Remember: Parents have more knowledge about their son or daughter's skills, strengths, and challenges than anyone else. This information is often overlooked because those skills have been seen at home, at school or in the community but not necessarily at a job.

It will be helpful to work with your son or daughter to assist them in finding out and writing down their strengths, talents, and challenges. They will need this skill to speak to their vocational rehabilitation counselor or anyone else who is working with your son or daughter in helping them to find employment.

Developing Skills

Encourage learning "soft skills" at home and at school. These skills should include:

Remember: The development of self-advocacy skills is critical to your son or daughter successfully entering adulthood and obtaining employment.

Important!

Appropriate hygiene is required on most job sites. Being clean and professional can determine success and failure during the interview and on the job.

Learning how to handle conflict is critical. Practice and plan for this skill. You can do this through role-playing or modeling.

Planning for transportation to and from the job site is crucial. Helping your son or daughter to access public or private transportation is very important.

Safety skills training in the community is essential. Information on safety skills training can be found on our website here: Autism Safety Project.

Supported Employment

Supported employment is a service that can help an individual keep employment.

Remember: It is important to research supported employment providers in your area and to help your son or daughter figure out the support options that are most helpful for him/her. Your state vocational rehabilitation program can assist you with the process of finding a service provider.

Other Employment Supports

Job coaches, co-workers, supervisors, and mentors have all been used as employment supports for people with autism. To read more about employment supports, check out:

There are other resources in your local community that can provide support. One valuable resource is the Centers for Independent Living. Centers for Independent Living (CILs) provide services to help individuals with disabilities obtain independence. These centers provide several services including, advocacy, independent living skills training, information and referral, and peer counseling.

Find the Center for Independent Living in your area.

Remember: Services for adults are based on whether a person is eligible for services and whether there is money available from the state or federal government. Services for adults are not entitlements.

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Practical Employment Tips for Parents | Autism Speaks

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As a parent, you may often worry about your son or daughter's future - especially when it comes to employment. Having a job or a career often does not come easily to many adults on the autism spectrum. The following information will give you guidance on how to support your son or daughter during the journey for employment.

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-https://www.uhccf.org/

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The information on this website is not intended as legal or tax advice. For such advice, please consult an attorney or tax advisor. Prospective donors are urged to consult their personal tax and financial advisors concerning the specific consequences of making gifts to UHCCF. We would be pleased to discuss, in confidence, ways in which you may support UHCCF. State income/estate taxes or state law may impact your results. © 2023 UnitedHealthcare Children's Foundation. All Rights Reserved. Non-profit Website Design by Push10.

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United Healthcare Children’s Foundation - UHCCF

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We improve the lives of families by providing health care grants for kids through sponsors, donors, and non-profit fundraising events.

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Autism Speaks does not provide medical or legal advice or services. Rather, Autism Speaks provides general information about autism as a service to the community. The information provided on our website is not a recommendation, referral or endorsement of any resource, therapeutic method, or service provider and does not replace the advice of medical, legal or educational professionals. Autism Speaks has not validated and is not responsible for any information, events, or services provided by third parties. The views and opinions expressed in blogs on our website do not necessarily reflect the views of Autism Speaks.

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Centers for Disease Control and Prevention

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Many children with developmental delays or behavior concerns are not identified as early as possible. As a result, these children must wait to get the help they need to do well in social and educational settings (for example, in school, at home, and in the community). By the time they are identified, significant delays may have occurred and opportunities for intervention might have been missed. Getting services as early as possible can make a difference in the development of a child with ASD or other developmental problems.

Early Intervention Services - Ages 0-3 years

Research shows that early intervention services can greatly improve a child's development and result in better outcomes . Early intervention services help children from birth to 3 years old learn important skills. Services include therapy to help the child talk, walk, and interact with others. Therefore, it is important to talk to your child's doctor as soon as possible if you think your child has ASD or other developmental problem. However, a referral from a physician is not necessary to request an evaluation and, if indicated, receive services. It is possible for a parent to self-refer.

If you think your child may have a developmental delay related or unrelated to autism, he or she may be eligible for early intervention services. The Individuals with Disabilities Education Act (IDEA) says that children under the age of 3 years who are at risk of having developmental delays may be eligible for services. These services are provided through an early intervention system in your state or territory. Through this system, you can ask for an evaluation.

In addition, treatment for specific symptoms, such as speech therapy for language delays, often does not need to wait for a formal ASD diagnosis. While early intervention is extremely important, intervention at any age can be helpful.
Learn more about early intervention Find your state or territory's early intervention program
Special Education Services - Ages 3-22 years

Children with disabilities, including ASD, may be eligible for services through the local education system beginning at age 3 years. Children with ASD often have an Individualized Education Plan (IEP) or a 504 plan. Eligible children can begin to receive services prior to formally starting school, even if the child has not been diagnosed with ASD.

If you are concerned about your child, contact your local public school system. Even if your child is not yet old enough for kindergarten or enrolled in a public school, you can call your local elementary school or board of education and ask to speak with someone who can help you have your child evaluated. This is sometimes called a "Child Find" evaluation. You do not need to wait for a doctor's referral or medical diagnosis to make this call. If you are not sure who to contact, call the Early Childhood Technical Assistance Center (ECTA) at #919-962-2001, or visit the ECTA website.

References

1. Hyman SL, Levey SE, Myers SM, Council on Children with Disabilities, Section on Developmental and Behavioral Pediatrics. Identification, Evaluation, and Management of Children With Autism Spectrum Disorder. Peditarics. 2020 Jan;145(1).

2. Dawson, G., et al., Randomized, controlled trial of an intervention for toddlers with autism: the Early Start Denver Model. Pediatrics, 2010. 125(1): p. e17-23.

3. Reaven, J., et al., Group cognitive behavior therapy for children with high-functioning autism spectrum disorders and anxiety: a randomized trial. J Child Psychol Psychiatry, 2012. 53(4): p. 410-9.

4. Reichow, B., et al., Early intensive behavioral intervention (EIBI) for young children with autism spectrum disorders (ASD). Cochrane Database Syst Rev, 2018. 5: p. CD009260.

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Accessing Services for Autism Spectrum Disorder

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Getting services as early as possible can make a difference in the development of a child with ASD or other developmental problems.

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The graphic below represents a number of areas that can be affected by ASD.

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The graphic below represents a number of areas that can be affected by ASD.

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FROM THE AMERICAN ACADEMY OF PEDIATRICS| CLINICAL REPORT| JANUARY 01 2020Identification, Evaluation, and Management of Children With Autism Spectrum Disorder

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FROM THE AMERICAN ACADEMY OF PEDIATRICS| CLINICAL REPORT| JANUARY 01 2020Identification, Evaluation, and Management of Children With Autism Spectrum Disorder

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Susan L. Hyman, Susan E. Levy, Scott M. Myers, COUNCIL ON CHILDREN WITH DISABILITIES, SECTION ON DEVELOPMENTAL AND BEHAVIORAL PEDIATRICS, Dennis Z. Kuo, Susan Apkon, Lynn F. Davidson, Kathryn A. Ellerbeck, Jessica E.A. Foster, Garey H. Noritz, Mary O'Connor Leppert, Barbara S. Saunders, Christopher Stille, Larry Yin, Carol C. Weitzman, David Omer Childers, Jack M. Levine, Ada Myriam Peralta-Carcelen, Jennifer K. Poon, Peter J. Smith, Nathan Jon Blum, John Ichiro Takayama, Rebecca Baum, Robert G. Voigt, Carolyn Bridgemohan; Identification, Evaluation, and Management of Children With Autism Spectrum Disorder. Pediatrics January 2020; 145 (1): e20193447. 10.1542/peds.2019-3447

Download citation file:

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Identification, Evaluation, and Management of Children With Autism Spectrum Disorder

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Autism spectrum disorder (ASD) is a common neurodevelopmental disorder with reported prevalence in the United States of 1 in 59 children (approximately 1.7%). Core deficits are identified in 2 domains: social communication/interaction and restrictive, repetitive patterns of behavior. Children and youth with ASD have service needs in behavioral, educational, health, leisure, family support, and other areas.

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Do you want to learn more about helping to prepare your child for the transition process and how to best support him/her from middle school through the transition into adulthood? Join us for a tele-learning program for families with transition-aged children (ages 12-22) and learn about the best ways to support your transition-aged youth.

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From Nowhere to “Know Where”: Transition to Adult Services By the Utah Parent Center What is in store for youth with disabilities after they leave school? What will happen to your child when they no longer receive the educational services or accommodations which have been mandated by federal law?…

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Echolalia and Its Role in Gestalt Language Acquisition

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Echolalia is the repetition of utterances produced by others. There are two types of echolalia—immediate and delayed.

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It is very important to understand a learner's language acquisition style before designing an intervention plan for them. In this article we look into a style of language acquisition called the Gestalt processing style. Read on to understand how we can effectively support children who learn in this style!
Language acquisition in most children happens with learning and acquiring single words as units first followed by combining them into sentences. This style is called analytical processing. Here the child analyses the statements they hear, breaking them into single words.

Many children on the autistic spectrum employ a different language acquisition style, known as Gestalt processing style. The internal structure of a statement doesn't make much sense to children who are Gestalt Processors. Instead, they acquire language as chunks or scripts. For them, the smallest unit of comprehension is not words. Even if they use single words, they may have difficulty in combining them with other words in a meaningful way.

Stages in Gestalt Language Acquisition

The Gestalt language acquisition typically has the following stages:

1. Echolalia: repetition of chunks of words or words out of context. Read more about Echolalia here.

2. Mitigation by mixing and matching shorter segments from the chunks: For example, if a child keeps repeating "Let's go play" and "Want some water" during stage 1, in stage 2 they may break down these two chunks and say, "Let's go some water".

3. Understanding that words are units: In this stage they would be able to single out words, understand that words can stand alone, and would try combining them with other words

4. Self-generated language: moving beyond the words they pick up from others and forming their original sentences and language

5. Making sense and usage of simple grammar in communication

6. Making sense and usage of complex grammar in communication

The initial Echolalia may seem meaningless. But for Gestalt Language Processors, it is a real attempt to communicate. Our failure to acknowledge that attempt might frustrate them. This may even discourage them from attempting to communicate at all.

How to Support Gestalt Processors

Children who acquire language through gestalt processing need adequate attention and support. Here is a step by step guide to do this!

Acknowledge

The first step is to make the child feel acknowledged. Even if we don't understand anything, we should initiate acknowledgement by nodding, smiling and repeating what they said. There is an extra layer of information beneath the Echolalia that we need to decode. Paying careful attention to the non-verbal cues while we acknowledge can give us some more information on what the child is trying to communicate. The process is very unique to every child.

Mitigate

We should facilitate interaction through comments, affirmations and reflective questions as opposed to commands, prompts and wh- questions. This approach has proven to mitigate Echolalia. Instead of controlling the interaction and expecting a specific response, we should aim to let the child initiate and lead the conversation. Letting it flow freely motivates the child to communicate. This also enables the communication partner to tune into the child's natural mode of playing and sustaining the conversation.

Gestalt language processors are known to pick up scripts/chunks from highly dramatic circumstances. Knowing the context is important in mitigating such Echolalia. There are categories of Gestalt scripts that are easy to mitigate. Such gestalts can be used to replace the ones that the child is currently using. Eventually, the easy to mitigate gestalt script can be worked upon.

Using AAC

AAC devices are currently modelled through the lens of an analytical language processor. However, there are ways in which we can use AAC with Gestalt Language Processors. A lot of children on the autism spectrum are Gestalt Language Processors. An AAC system to may be just the thing they need to communicate.

Paying attention to what they do with an AAC system, their stimming habits and patterns can give us a cue that they want to communicate. Caretakers can use AAC with Gestalt Language Processors by inputting the scripts they try to mimic with a voice over and a visual display of what it means. This may be one way to give and get feedback on what the child is trying to communicate.

Using AAC for Gestalt Learners.

Speech therapies designed around Analytical language Processors may seem to work with Gestalt Processors but it eventually ends up making them feel stuck with a single word and not being able to combine them with others. As always, the bottom line is to motivate the child to communicate, and any form of communication is always a good sign.

Conclusion

While enabling communication, it is important for us to understand a learner's style of language acquisition. Once we do that, we can effectively support them. Gestalt language processors have a unique way of acquiring language. With a little bit of attention and support, we can easily enable Gestalt learners to thrive!

Try Avaz AAC. To know more about the features you can request a demo here.

Access GLP infographics here.

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Language Acquisition : Gestalt Processing - Avaz Inc.

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It is very important to understand a learner's language acquisition style before designing an intervention plan for them. In this article we look into a style of language acquisition called the Gestalt processing style. Read on to understand how we can effectively support children who learn in this style!

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We have previously explored gestalt language processing as a means of language acquisition on the Avaz Blog. In this blog we go deeper into the subject. How can we identify children who acquire language in this fashion? And what can we do to better support them? Read on to learn more.
Language Development for Autistic Children

Delayed language development is common among individuals on the Autism spectrum. However, it is not universal. Children with ASD begin speaking at the age of 38 months on average. Of these, only 30%-50% acquire phrase speech by the age of four. Autistic children have a defined set of expressive vocabularies, and many of them also make echolalic expressions.

Analytic vs Gestalt Processing

Between the 1960s & 1980s, researchers discovered hat there were two forms of language development . One of the forms was termed 'analytic'. Analytic processing looks like adults tending to analyze sentences. Here the child simply follows the lead of the adult. They do what comes naturally to them - which is saying that one word.

What if the child doesn't start with a single word? What if the child produces a chunk of words as a whole without understanding the structure of the language? This is what gestalt processing is all about! Say a child who develops language via Gestalt Processing hears their parents say "Wow! That's a big car!". The child may use the same sentence every time they see a car.

The term gestalt in German translates to 'whole'. When a child communicates with longer units of language, they are identified as gestalt processors. This happens in 4 stages. These are - Echolalia, Mitigation, Isolation, Recombination of words and Generation.

Identifying a Gestalt Language Processor

With this knowledge, we can identify children or learners who are Gestalt Language Processors. Some of the indications are:

Use of Echolalia or scripts.

Speaking in third person.

Mixing up pronouns while speaking (aka pronoun reversals).

If your child is diagnosed with either autism or hyperlexia, then there's a high likelihood that they are learning language via gestalt processing.

Frequent scripting. For example : Reading the same book repeatedly. Rewinding and rewatching a single video clip also comes under this.

Delayed language.

Their language contains a lot of rich intonation. Intonation refers to how the pitch of your voice rises and falls as you speak. Gestalt language processors typically use vibrant or vivid language.

Developing Spontaneous Communication

It is challenging to tell if gestalt language processors are babbling or utilizing words when they first start developing language. Speaking in larger units (sentences) reduces speech clarity. This may make it difficult for parents to determine the same.

Individuals who are gestalt language processors may find it challenging to break their sentences down into individual words. This may result in less versatile and spontaneous language. For gestalt processors, one sentence equals one word. Just because a person uses longer sentences, does not mean they understand all of them.

It's vital to remember that language needs to be adaptable and spontaneous, and the best way to teach this is to start with single-word utterances.

What Can be Done?

So, how can we support children who are gestalt language processors? Here are some pointers:

Talk naturally with the gestalt processor.

Follow their lead and do things that you both enjoy.

Communicate using sentences which are short enough to understand but long enough to mitigate.

Patience is key.

Don't focus on single words. Refrain from expanding what the gestalt processor speaks.

Avoid analytical strategies for gestalt processors. ABA or otherwise.

Assist in self-regulation.

Patience is Key

Gestalt learners start showing more traces of gestalt language when they are learning to communicate as a child. It is imperative to concentrate on growing their vocabulary at this stage. This helps to generate the essential "building blocks" for spontaneous language construction.

Communication in any form is a good starting point. It is important to remember that progress takes time.

Try Avaz AAC. To know more about the features book a product demo.

References

Marge Blanc - Natural Language Acquisition on the Autism Spectrum: The Journey from Echolalia to Self-Generated Language, 2012

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Gestalt Language Processing & Spontaneous Communication - Avaz Inc.

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We have previously explored gestalt language processing as a means of language acquisition on the Avaz Blog. In this blog we go deeper into the subject. How can we identify children who acquire language in this fashion? And what can we do to better support them? Read on to learn more.

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Autism spectrum disorders (ASD) and attention deficit hyperactivity disorder (ADHD) are commonly co-occurring conditions with significantly elevated prevalence rates. Though they are distinct, people with diagnoses of either autism or ADHD often struggle in similar situations. Also, autism can influence the presentation of ADHD and vice versa; accurate assessment for each is complicated and critical.

While autism and ADHD are life-long conditions for most people, research has focused almost exclusively on children because that is when symptoms first emerge. This emphasis on childhood leaves clinicians to extrapolate interventions and supports for adults. What we do know is that co-occurring autism and ADHD in adults carries unique implications and considerations that don't exist for either condition on its own. In short, adults on the autism spectrum who exhibit more ADHD symptoms also experience greater functional impairments.

Despite anemic research beyond childhood, there is a growing clinical consensus regarding approaches to evaluation, treatment, and support for autistic adults with a co-occurring ADHD diagnosis.

Adult Autism: Evaluation and Diagnosis

Autism Symptoms and Criteria

Autism is broadly characterized by persistent challenges in social communication and social interaction, as well as the presence of repetitive behaviors. Full diagnostic criteria for autism spectrum disorder are outlined in the Diagnostic and Statistical Manual of Mental Disorder (DSM-5). During an evaluation, clinicians look for significant challenges in the following domains to determine whether an adult is on the autism spectrum. These behaviors must be present during development, and they must cause significant impairment in functioning to warrant a diagnosis:
[Read: What Does Autism Spectrum Disorder Look Like in Adults?]
1. Deficits in Social Communication and Social Interaction

Social emotional reciprocity refers to the back-and-forth interaction that takes place with another person during social interactions and conversations. Naturally, clinicians evaluate different behaviors in adults and children.

Non-verbal communication is another way of saying body language. Clinicians evaluate the use and integration of gestures, facial expression, and other body parts in communication. Lack of eye contact while communicating is one common behavior observed in individuals on the autism spectrum. Clinicians also evaluate a person's ability to understand non-verbal communication in others.

Developing, maintaining, and understanding relationships. Clinicians often evaluate understanding of how relationships work, differences among types of relationships (friendships, acquaintances, romantic, and family, including how the patient adjusts behavior to suit context and their level of interest in close relationships.

2. Repetitive Behaviors

Clinicians look for restrictive, repetitive patterns of behavior, interests, or activities that are maintained across the following four categories; only two categories need to be present for a diagnosis:

Stereotypes or repetitive motor movements, use or objects, or speech. Some examples include hand flapping, odd or unusual finger movements, and pacing; lining up toys rather than playing with them (when younger); a narrow repertoire for starting or maintaining conversations or using idiosyncratic phrasing.

Insistence on sameness. Autistic adults may want things to be exactly the same day after day (from taking the same route to eating the same food, for example), and will experience difficulty if routines are changed. They often experience difficulties with unexpected or rapid transitions, suffer extreme distress at small changes, and exhibit rigid thinking patterns.

Interests. Autistic adults can be highly fixated on interests that can span any subject or theme. Their interest and intensity level are far greater than they would be for other people, to the point that they may interfere with other activities and functioning. These interests must last for at least 3 months.

Sensory reactivity. Many individuals on the autism spectrum identify as having unusually strong or diminished responses to sensory information. Certain sensory inputs that would be "everyday sounds" for many people may be particularly bothersome or fascinating to people on the spectrum. Autistic adults may want to avoid certain sensory experiences because they find them aversive, or they may seek experiences they find particularly appealing. Some individuals may also have an apparent "absence" of reaction (e.g. indifference to pain and temperature).

[Read: Commonly Missed Signs of Autism in Adults]
Clinicians should also specify co-occurring conditions in the following three domains:

intellectual disability (present in about 30 percent of autistic people)

language impairment (can be receptive, expressive, or mixed expressive/receptive)

association with a known medical, genetic, or environmental factor (e.g., roughly 25% to 50% of people with Fragile X syndrome, particularly males, will also meet criteria for autism)

At the time of diagnosis, clinicians should also acknowledge an appropriate and helpful level of support for each patient. Many individuals who receive an ASD diagnosis in adulthood tend to fall under Level One, i.e. "requires support," as they have developed and utilized coping mechanisms over time that allowed them to move through childhood and adulthood with enough success to not seek or be referred for an evaluation. Without supports, however, impairments may be noticeable.

Adult Autism Assessment

An autism diagnosis at any age typically follows a referral. Some factors that usually prompt a referral in adulthood include difficulty with work and relationships; "failure to launch"; and, especially in the age of social media, learning about autism and seeing personal similarities.

There is no single test that identifies autism in adulthood or at any age. There are, however, gold standard screening and diagnostic tools that clinicians use to evaluate patients for autism:

Detailed developmental histories help clinicians understand how a patient's symptoms unfolded over time, and whether signs were present early in life or driven by major life changes.

Autism screening tools, like the Social Communication Questionnaire and the Autism Spectrum Quotient, carry some pros and cons. Some autistic individuals report that the questions do not accurately capture their experience.

The Autism Diagnostic Observation Schedule-2 (ADOS) includes a clinical interview and observation of the patient's non-verbal communication and other social skills, as well as observation of repetitive behaviors.

An Adaptive Behavior Assessment focuses on skills needed in everyday life to achieve independence. It covers three major domains: conceptual skills (e.g. communication, cognitive tasks), daily living skills (e.g. hygiene, household management), and socialization (e.g. relationships, coping skills, hobbies). For many autistic adults, these skills can lag compared to their general intelligence, and may be a bigger barrier to living independently than any autism symptom.

Psychiatric assessments help ascertain an autism diagnosis by ruling out other conditions that could explain symptoms. Common diagnostic differentials for autism include social anxiety, generalized anxiety disorder, ADHD, and obsessive compulsive disorder (OCD).

Adult Autism and ADHD

Though little research exists on autism and ADHD in adults, some studies estimate that the disorders coexist at rates between 20% and 37%.

ADHD is characterized by symptoms of inattention, hyperactivity, and/or impulsivity - different from the social communication symptoms and restricted behaviors associated with autism.

Still, some ADHD symptoms relate to the diagnostic criteria for autism. Not listening when spoken to directly, for example, is indicative of inattention, a common ADHD symptom. But given the strong social demands embedded in rating a person on this symptom, it could also indicate autism. If an adult is not making eye contact during a conversation, then it may give the appearance of 'not listening when spoken to directly'. Differential psychiatric assessments as well as other diagnostic tools can help clinicians determine whether this symptom stems from distractibility (which indicates ADHD) or from deficits in social-emotional reciprocity and nonverbal communication (which indicate autism).

It's critical for clinicians to consider whether an ADHD symptom appears in non-social situations. If a patient reports feeling distracted when working alone and without social demands, that may indicate ADHD more than autism. Distractions should be further analyzed - is the patient daydreaming, or are they being pulled into a sound they hear that may be bothering them? The latter may indicate sensory sensitivity related to autism.

ADHD in Autistic Adults: Outcomes

Greater functional impairments exist in autistic adults as more ADHD symptoms are present. That's according to a recent study involving 724 autistic adults who were asked about the frequency and severity of behaviors associated with autism and ADHD, their quality of life, and other aspects of living. In all cases, comorbid ADHD explained measurable variances in adaptive behaviors compared to controls.

Adult Autism and ADHD: Treatment and Interventions

There are currently no studies available on the use of ADHD treatments with adults with both ADHD and autism diagnoses. Most treatment recommendations for adults have been adapted from research on autistic children.

Clinicians, however, generally agree on the supports and therapeutic interventions that matter most to autistic adults with ADHD - and which ones increase independence and improve quality of life, as highlighted in a recent paper authored by ASD and ADHD researchers. The recommendations cover pharmacological and non-pharmacological interventions, as well as behavioral and environmental approaches in work and higher education. They include but are not limited to:
Non-pharmacological Interventions

Cognitive behavioral therapy (CBT), cognitive remediation therapy, and similar approaches; specific adaptations may be necessary for individuals with social communication and intellectual limitations. Adults may respond better to group-delivered treatments than do children.

Therapies focusing on executive function; Flexible Futures is an upcoming program that targets these skills in autistic adults with ADHD (a children's version, Unstuck and On Target, is available and has research supporting its efficacy).

Psychoeducation helps to support many patients and families.

Educational/Vocational Supports

Identifying realistic career goals

Seeking volunteer opportunities to learn about the work environment

Using supports for completing applications and job interviews
Identifying and seeking adjustments and accommodations at work or school (Standardized accommodations like extended time on tests, for example, may not be suitable for autistic adults with an ADHD diagnosis, who may benefit more from a mid-point break)

Coaching to support long-term goals

Using strategies to aid concentration and reduce anxiety

Adopting assistive technology devices

Making use of organizational supports (peer systems, skills training)

Pharmacological Interventions
Pharmacological treatments for co-occurring ASD and ADHD in adults do not differ significantly from the treatments used with each disorder individually. Stimulant and non-stimulant medications are commonly prescribed to treat ADHD. Though there are no FDA-approved pharmacological medications to address core symptoms of ASD, antipsychotics like risperidone and aripiprazole are often used to address anger and irritability. Behavioral and environmental interventions, however, are more common and appropriate first-line approaches for targeting core autism behaviors.

Still, expert consensus is that prescribers should start on low doses and move slowly through treatment, as adults with both conditions may be more treatment resistant and sensitive to medication. The goals and targets for medications (as with any intervention) should also be clarified at the outset along with measures of effectiveness.

Other best practices:

Adults with ASD and ADHD diagnoses may be unable to swallow medications in pill/tablet form due to sensory issues and/or physical difficulties. Clinicians should consider liquid formulations and alternative preparations.

Some adults may have difficulty describing their thoughts, feelings, and sensations, which could impact patient feedback on treatments. Clinicians should use visual tools, including mood scales and drawings, to aid with reporting.

The content for this article was derived from the ADDitude Expert Webinar "Do I Have Autism? ADHD? Both? An Adult's Guide to Diagnosis and Treatment" [ADDitude ADHD Experts Podcast Episode #354] with Benjamin E. Yerys, Ph.D., which was broadcast live on May 11, 2021.
Adult Autism and ADHD: Next Steps

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Thank you for reading ADDitude. To support our mission of providing ADHD education and support, please consider subscribing. Your readership and support help make our content and outreach possible. Thank you.

Sources
¹ Hollingdale J., Woodhouse E., Young S, Fridman A, Mandy W. (2019) Autistic spectrum disorder symptoms in children and adolescents with attention deficit/hyperactivity disorder: a meta-analytical review. Psychol Med, BMC Psychiatry. 19:404. https://doi.org/10.1186/s12888-019-2284-3 ² Lai, M. C., Lombardo, M. V., & Baron-Cohen, S. (2014). Autism. Lancet (London, England), 383(9920), 896-910. https://doi.org/10.1016/S0140-6736(13)61539-1 ³ Young, S., Hollingdale, J., Absoud, M. et al. (May 2020). Guidance for identification and treatment of individuals with attention deficit/hyperactivity disorder and autism spectrum disorder based upon expert consensus. BMC Medicine 18, 146. https://doi.org/10.1186/s12916-020-01585-y

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ADHD and Adult Autism: Symptoms, Diagnosis & Interventions for Both

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Autism and ADHD coexist at significantly elevated rates, and adults with both disorders face unique challenges. Symptoms of both conditions can resemble one another - one reason why clinicians typically screen for both during assessment. While research on adult autism and ADHD is scarce, clinicians largely agree on best practices in the evaluation and treatment of patients with both disorders.

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Could You Have Symptoms of Autism in Adults?

Autism spectrum disorder (ASD) occurs in all age, racial, ethnic, and socioeconomic groups, according to the Centers for Disease Control . Autism is generally characterized by social and communication difficulties and by repetitive behaviors. Often, severe forms of ASD are diagnosed in the first two years of a child's life, but high-functioning individuals may not be diagnosed until much later in life.

Signs of autism occur in three main areas:

Social interactions

Verbal and nonverbal communication

Repetitive or ritualistic behaviors

Some autistic adults may exhibit symptoms that resemble attention deficit hyperactivity disorder ( ADHD); others may have symptoms like impaired spoken language. Bottom line - adult autism can manifest in different ways. Regardless of manifestation or severity, ASD symptoms can pose challenges in everyday life. And as our understanding of those challenges improves, more people than ever are being diagnosed with ASD.
[Sef-Test: Autism Spectrum Disorder Symptoms In Adults]
Symptoms of Autism Spectrum Disorder in Adults

Common symptoms of autism in adults include:

Difficulty interpreting what others are thinking or feeling

Trouble interpreting facial expressions, body language, or social cues

Difficulty regulating emotion

Trouble keeping up a conversation

Inflection that does not reflect feelings

Difficulty maintaining the natural give-and-take of a conversation; prone to monologues on a favorite subject

Tendency to engage in repetitive or routine behaviors

Only participates in a restricted range of activities

Strict consistency to daily routines; outbursts when changes occur

Exhibiting strong, special interests

Autism spectrum disorder (ASD) is typically a life-long condition, though early diagnosis and treatment can make a tremendous difference.

Autism Symptoms in Adults at Home

Other peoples' feelings baffle you. You have a collection of figurines on your desk that must be in the same order at all times. These, and other common manifestations of ASD, may be apparent in adults at home:

Your family members lovingly refer to you as the "eccentric professor" of the family, even though you don't work in academia.

You've always wanted a best friend, but never found one.

You often invent your own words and expressions to describe things.

Even when you're in a quiet place, like the library, you find yourself making involuntary noises like clearing your throat over and over.

You follow the same schedule every day of the week, and don't like unexpected events.

Expressions like, "Curiosity killed the cat" or "Don't count your chickens before they hatch" are confusing to you.

You are always bumping into things and tripping over your own feet.

In your leisure time, you prefer to play individual games and sports, like golf, where everyone works for themselves instead of working toward a common goal on a team.

Autism Symptoms in Adults at Work

Symptoms of ASD vary greatly from person to person based on the severity of the condition. These or similar manifestations of ASD may be apparent at work:

When you're having a conversation with your boss, you prefer to look at the wall, her shoes, or anywhere but directly into her eyes.

Your co-workers say that you speak like a robot.

Each item on your desk has a special place, and you don't like when the cleaning company rearranges it to dust.

You are really good at math, or software coding, but struggle to succeed in other areas.

You talk to your co-workers the same way you talk with your family and friends.

During meetings, you find yourself making involuntary noises, like clearing your throat over and over.

When talking with your boss, you have difficulty telling if he is happy with your performance or mad at you.

In addition, autistic individuals may exhibit extraordinary talents in visual skills, music, math, and art. And roughly 40 percent of autistic individuals have average or above-average intelligence.

If you experience these or similar symptoms of ASD, consult a doctor or mental-health professional for a formal autism evaluation and learn more about treatment options for autism symptoms in adults.

Signs of Autism in Adults: Next Steps

View Article Sources
"Data & Statistics on Autism Spectrum Disorder." Centers for Disease Control and Prevention. Ed. Center for Disease Control. Centers for Disease Control and Prevention. Accessed 12 Dec. 2019.
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Thank you for reading ADDitude. To support our mission of providing ADHD education and support, please consider subscribing. Your readership and support help make our content and outreach possible. Thank you.

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What Does Autism Spectrum Disorder Look Like in Adults?

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Awareness of autism spectrum disorder (ASD) in adults has grown dramatically in recent years, which reflects both an increase in diagnoses and in the public's understanding that, even late in life, a diagnosis can offer major benefits and relief. Learn more about the symptoms of autism in adults here.

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The mean age of autism diagnosis in the US and UK is , though later diagnoses do occur (Zwiagenbaum et al., 2019). Age at diagnosis depends upon variables such as symptom severity, socioeconomic status, and initial parental concerns or misidentification of symptoms as behavioral issues ( Fountain et al., 2011 ; Shattuck et al., 2009 ). Typically individuals with more severe symptom challenges receive an autism diagnosis early in life compared to those with subtle symptomatic differences (Zwiagenbaum et al., 2019; Edelson et al., 2020 ). Those diagnosed later in life are thought to have less severe symptoms and a higher likelihood of reaching self-sufficiency and functionality ( Jones et al., 2014 ). However, this successful adaptation to symptoms often masks an autism diagnosis and leaves many of these individuals to experience autism-related health issues without understanding the root cause ( Griffith et al., 2012 ).

Autism was first recognized in the Diagnostic and Statistical Manual for Mental Disorders in 1980 and until recently was understood only as a pediatric condition ( Verhoeff, 2013 ); this left potentially significant numbers of teenagers and adults (now adults and seniors) under- or misdiagnosed for decades. As our understanding of autism and its prevalence has evolved, mid-to-late life diagnosis has become a more important topic in autism research ( Au-Yeng et al., 2018 ). Presently, reliable assessments and diagnostic measures specific to older age groups have yet to be developed and widely accepted ( Wingham et al., 2019 ). Edelson et al. ( ) presuppose that the current lack of a diagnosis may be due to insufficient healthcare training surrounding the medical and social/emotional needs and the communication, sensory and behavioral challenges faced by adults on the spectrum. They call for a greater focus on validated diagnostic assessments for adults and seniors with autism in order to provide sufficient medical and social support for these individuals.

Autism Symptoms in Adults

"Classic" symptoms of autism in children are not always present in adults on the spectrum, especially in those underdiagnosed as children ( ). Adults on the spectrum commonly exhibit symptoms related to social and communication difficulties, repetitive behaviors, sensory processing difficulties, and issues with executive function and theory of mind. Short descriptions and lists of common symptoms in adults are listed below ( Autism Speaks, 2015 ; Lewis, 2018).

Social Symptoms

Social difficulties include issues with communication and understanding, which sometimes makes the ordinary exchange process of social conversation difficult. It is often difficult for adults with autism to see things from another point of view and interpret nonverbal communications such as eye-rolling, shoulder shrugging, or other facial expressions.

Examples include:

May be prone to unintentional social blunders, misspeaking;

Somewhat flat affect, or unique nonverbal emotional display;

Experiences challenges maintaining conversations and staying on topic - responding with long monologues or extremely short answers;

Language for social interaction is occasionally stilted;

Difficulty articulating personal thoughts;

Intense memory of details - such as facts or names;

Needs support to understand figurative language - may be more comfortable taking things literally.

Repetitive Behaviors

Repetitive behaviors include restricted schedules and activities, strict layouts and consistency of surrounding environments, and intense interests or obsessions. Often repetitive behaviors are responses to overstimulation and signs of sensory processing issues.

Examples include:

Self-stimulatory behavior like hand rubbing on thigh/finger rubbing in pockets or foot-tapping;

Preference for sameness and routine - may experience stress or outbursts when these are interrupted;

Dressing in comfortable clothes that may contradict social expectations;

Susceptible to distraction by sounds or visual effects.

Executive Function

Executive function refers to abilities and skills related to planning, organizing, attention maintenance, and self-regulation. Adults on the spectrum may experience challenges with complex planning and thinking, making it difficult to see "big-picture" ideas into which their intense subjects of focus fit.

Examples include:

Needs support to set long-term goals and schedules;

May be unintentionally late or forget appointments;

Experiences challenges understanding broad theories while mastering minute details;

Needs encouragement and support to understand other people's expectations and perspectives.

Is it Autism?

These symptoms do not categorically evidence an autism diagnosis. However, it is essential to note that autism is frequently accompanied by at least one co-occurring condition such as ADHD, anxiety, depression, gastrointestinal and immune function disorders, or epilepsy. If you have/currently suffer from a combination of these conditions (diagnosed or not), discussing the possibility of autism screening and diagnosis with your practitioner could supply answers and understanding to some health issues.

There is, to date, no laboratory test for autism. Autism screenings include questionnaires and observations to assess which symptoms are present and their severity. After an initial assessment, your clinician will likely refer you to a specialist team for proper autism screening and diagnosis.

Not all adults who identify with autism symptoms seek out a clinical diagnosis. That remains a personal choice, and there are benefits to both decisions. However, consulting with your general practitioner can help you better understand and manage autism symptoms even without a clinical diagnosis.

Post Diagnosis

Many autism services and programs are only available to those with a clinical diagnosis. After receiving an autism diagnosis, you can collaborate with your doctor to identify treatments and services specific to your needs. Getting involved in your communities can help you better understand autism and provide access to support through local groups and services designed specifically for individuals with your strengths and talents.

Our adult webinar page is a useful source of evidence-based information and resources for adults diagnosed with autism.

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The mean age of autism diagnosis in the US and UK is 4 to 5, though later diagnoses do occur (Zwiagenbaum et al., 2019). Age at diagnosis depends upon variables such as symptom severity, socioeconomic status, and initial parental concerns or misidentification of symptoms as behavioral

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As the steadily increasing numbers of children diagnosed with autism spectrum disorder become adults, how can society help them to live independently? One answer is to design cities with their needs in mind, according to an architecture graduate student who created a toolkit, “A Ci…

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Autism Spectrum Disorders in Aging Adults

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Employment Tool Kit

There are a number of important federal laws that protect individuals with disabilities from discrimination in employment and the job application process. These laws are outlined below.
Americans with Disabilities Act
The Americans with Disabilities Act of 1990 prohibits discrimination based on disability. Under this act, disability is defined as "a physical or mental impairment that substantially limits a major life activity". The ADA requires employers with 15 or more employees to provide a reasonable accommodation for the individual with the disability. A "reasonable accommodation" is defined as any change or adjustment to a job or work environment that permits a qualified applicant or employee with a disability to participate in the job application process, to perform the essential functions of a job, or to enjoy benefits and privileges of employment equal to those enjoyed by employees without disabilities.
Rehabilitation Act of 1973 (PL 93-112)
The Rehabilitation Act is an act of Congress signed into law by President Richard M. Nixon on September 26, 1973. It prohibits discrimination on the basis of disability in programs conducted by federal agencies, in programs receiving federal financial assistance, in federal employment, and in the employment practices of federal contractors. Section 504 of the Act (see below) created and extended civil rights protections to people with disabilities. As a direct result of the Rehabilitation Act, many people with disabilities were provided opportunities in education and employment. The Rehabilitation Act of 1973 was amended in 1978 (to establish independent living centers), 1986 (to enhance support for rehabilitation engineering), 1992 (to ensure consumer choice in career opportunities), and 1998 (to provide federal funds to assist people with disabilities in finding meaningful employment).
Section 503
Section 503 of the Rehabilitation Act of 1973 prohibits discrimination and requires employers with federal contracts or subcontracts that exceed $10,000 to take affirmative action to hire, retain, and promote qualified individuals with disabilities. This law is enforced by the Employment Standards Administration's Office of Federal Contract Compliance Programs (OFCCP) within the U.S. Department of Labor.
Section 504
Section 504 states that "no qualified individual with a disability in the United States shall be excluded from, denied the benefits of, or be subjected to discrimination under" any program or activity that either receives federal financial assistance or is conducted by any executive agency or the United States Postal Service. Basically, this means all government-funded programs/entities must adhere to this law, meaning they cannot discriminate against an employee with a disability, or a potential employee with a disability.
Enforcing the Laws
Equal Employment Opportunity Commission (EEOC): The EEOC enforces laws against workplace discrimination on the basis of an individual's race, color, national origin, religion, sex, disability, and age. The law also protects people from discrimination based on their relationship with a person with a disability (even if they do not themselves have a disability). For example, it is illegal to discriminate against an employee because her husband has a disability. It is illegal to harass an applicant or employee because he or she has a disability, had a disability in the past, or is believed to have a physical or mental impairment that is not transitory (lasting or expected to last six months or less) and minor (even if he or she does not have such an impairment). Harassment can include, for example, offensive remarks about a person's disability. Although the law does not prohibit simple teasing, off-hand comments, or isolated incidents that aren't very serious, harassment is illegal when it is so frequent or severe that it creates a hostile or offensive work environment or when it results in an adverse employment decision (such as the victim being fired or demoted).

Resources if you feel your rights have been violated:

Filing a charge of discrimination with the EEOC

U.S. Department of Justice - Civil Rights Division

National Disability Rights Network

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Employment Tool Kit There are a number of important federal laws that protect individuals with disabilities from discrimination in employment and the job application process. These laws are outlined below. Americans with Disabilities Act The Americans with Disabilities Act of 1990 prohibits discrimination based on disability.

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For Employers and Recruiters Working and Hiring Individuals with ASD

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For Employers and Recruiters Working and Hiring Individuals with ASD

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Businesses around the world are recognizing the many strengths of adults with autism and their contributions to the workforce. Workplace Inclusion Now™ (WIN) is a collaboration of dozens of subject matter experts, business leaders, professionals with autism and members of the community. Together, we will increase employment opportunities and build workplaces where people with autism - and businesses - can thrive.

Why should employers join Workplace Inclusion Now?

Hiring people with autism and other intellectual and/or developmental differences isn't just about "doing the right thing." It's good for business. The benefits are vast and meaningful:

Welcoming workplaces drive innovation and ROI, and improve corporate culture.

Inclusive workplaces improve retention (up to 98% reported by some Silicon Valley companies), attendance and safety.

Diverse, welcoming, inclusive workplaces positively impact the bottom line.

In the U.S. alone, hundreds of thousands of people on the spectrum are ready and willing to work but don't have jobs or aren't working to their full potential.

Nearly half of 25-year-olds with autism have never held a paying job, and global estimates range as high as 85% un- or underemployment.

These statistics are not driven by a lack of employable skills. They are driven by old paradigms and processes that don't give people with autism the support they need to thrive in the workplace.

By participating in WIN, companies can not only play a crucial role in building more inclusive communities; they can also see significant positive impact on their success as a business.

Interested in learning more? Sign up here!

Other tools and resources:

The Autism @ Work Playbook is the product of a collaborative research project led by Dr. Hala Annabi, an associate professor at the University of Washington Information School. To create this guide, the ACCESS-IT Research Group at the Information School studied the Autism @ Work programs of four leading employers: Microsoft, SAP, JPMorgan Chase and EY.

Autism Speaks was proud to partner with Microsoft and others to produce the Autism Empowerment Kit in 2017. The kit provides employers with guidance, recommendations and resources for providing support and workplace accommodations to empower autistic employees throughout their employment lifecycle - from recruitment to training and career development. The Empowerment Kit is available for free download thanks to the Global Impact Sourcing Coalition (GISC), a forum of the world's leading companies committed to incorporate and scale impact sourcing as a business strategy.

We are thrilled that there is growing interest among businesses to explore how they can set up their own autism hiring initiatives. Companies are increasingly reaching out to Autism Speaks and others with questions about how to put together an effective program. In August 2018, we were proud to collaborate with legal experts from Duane Morris, LLP, SAP and Cornell University's Yang-Tan Institute on Employment and Disability to present this webinar that addresses legal t opics.

As part of a national funders' collaborative, Autism Speaks is proud to partner with the Workplace Initiative at the Poses Family Foundation. The Workplace Initiative helps companies recruit, hire and retain the largest untapped labor pool in the country - people with disabilities. This site offers all the tools and resources a business needs to embark on its inclusion journey. It includes facts and case studies to show how disability inclusion drives business value and a do-it-yourself guide that will take you from "how" to "hired" in seven clear steps. The Disability Employment and Inclusion: Your Guide to Success was published in 2017.

This 7-step guide was developed by the Employer Assistance and Resource Network on Disability Inclusion (EARN), a free resource that is funded by the U.S. Department of Labor's Office of Disability Employment Policy (ODEP). Developed with input from a range of employers with exemplary track records in disability employment, Inclusion@Work outlines seven core components of a disability-inclusive workplace, along with a menu of strategies for achieving them.

Additional Resources

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Businesses around the world are recognizing the many strengths of adults with autism and their contributions to the workforce. Workplace Inclusion Now™ (WIN) is a collaboration of dozens of subject matter experts, business leaders, professionals with autism and members of the community.

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Welcome to Workplace Inclusion Now™ (WIN). This program was designed by an autistic-led team to help you research, find and keep employment in a competitive labor market. Stories, tips and resources were developed from a collaboration of experts, led by autistic adults, based on multidisciplinary research into what makes a workforce thrive and how employees and employers can be set up for success.

WIN Success Story: Joanna at Lee Container, Centerville, IA

A key component of WIN are online courses designed to help make workplaces more accepting and understanding of our differences and give us tools to navigate our differences at work. These online courses, for the manufacturing, distribution and related industries, are self-paced and highly visual. They were designed with different learning styles in mind. Courses to prepare you for work in other industries are also in development.

Coming soon: new courses to help you build your skills and your resume.

Other free resources available to job seekers include:

Other tools and resources

Our Employment Tool Kit was designed to help you research, find and keep employment in the competitive labor market. Stories, tips and resources were developed from a collaboration of people, including adults with autism, dedicated to increasing the employment participation of adults on the spectrum.

Download the kit and begin your job search!
Understanding Social Security Benefits and Employment
For people with autism, a common concern when considering work is the possibility of losing one's benefits. Autism Speaks developed the video below and frequently asked questions to ease your concerns and help you on your search for a job that is right for you.

What is a Vocational Rehabilitation (VR) Agency, and how can it help me?

Each state has a Vocational Rehabilitation (Voc Rehab or VR) agency that provides employment service supports to people with disabilities (including autism). VR is paid for by the federal and state government, and you might be eligible if you apply. It is available in every state to help people with disabilities prepare for and obtain jobs. In big cities there may be several VR offices, whereas in rural areas there may only be one office that serves many counties.

Find your state Vocational Rehabilitation (VR) Agency here.

Additional resources for job seekers with autism:

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Job Seekers, Students & Employees | Autism Speaks

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Click here to see the Autism Employment Connector Challenge winners and more tools and information that can help job seekers with autism.