How to help an autistic child transition into adulthood

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Transition Tool Kit

The Autism Speaks Transition Tool Kit will help guide you on the journey from adolescence to adulthood.

This kit will provide you with suggestions and options for you to consider as you set out to find your child’s own unique path to adulthood.

Topics covered include self-advocacy skills, legal issues, housing and employment options.

The kit is broken into the following sections:

  • Introduction
  • Self-Advocacy
  • Developing Independent Living Skills
  • Planning for Transition
  • Legal Matters to Consider
  • Community Living
  • Employment and Other Options
  • Postsecondary Educational Opportunities
  • Housing and Residential Supports
  • Health
  • Technology
  • Conclusion
  • Resources

Order the Transition Tool Kit

Due to the impact of COVID-19, we are currently unable to fulfill orders for printed copies of the Transition Tool Kit. In the meantime, we encourage you to download the Autism Speaks Transition Tool Kit free of charge.

Autism Speaks thanks the following supporters whose generous contributions have helped to fund the Transition Tool Kit.

How to help an autistic child transition into adulthood

How to help an autistic child transition into adulthood

Our Autism Response Team (ART) is specially trained to connect people with autism, their families, and caretakers to information, tools, and resources.

As a parent, you’ve probably spent a lot of time thinking about your child’s future. Even more so if they have an autism spectrum disorder, or ASD diagnosis.

Apart from the medical care and therapies that you may line up to help your son or daughter, there are simple, everyday things that make a difference.

Focus on the positive. Just like anyone else, children with autism spectrum disorder often respond well to positive reinforcement. That means when you praise them for the behaviors they’re doing well, it will make them (and you) feel good.

Be specific, so that they know exactly what you liked about their behavior. Find ways to reward them, either with extra playtime or a small prize like a sticker.

Also, as you would with anyone — on the spectrum or not — prize your child for who they are. As a parent, loving your child for who they are is key.

Stay consistent and on schedule. People on the spectrum like routines. Make sure they get consistent guidance and interaction, so they can practice what they learn from therapy.

This can make learning new skills and behaviors easier, and help them apply their knowledge in different situations. Talk to their teachers and therapists and try to align on a consistent set of techniques and methods of interaction so you can bring what they’re learning home.

Put play on the schedule. Finding activities that seem like pure fun, and not more education or therapy, may help your child open up and connect with you.

Give it time. You’ll likely try a lot of different techniques, treatments, and approaches as you figure out what’s best for your child. Stay positive and try not to get discouraged if they don’t respond well to a particular method.

Take your child along for everyday activities. If your child’s behavior is unpredictable, you may feel like it’s easier not to expose them to certain situations. But when you take them on everyday errands like grocery shopping or a post office run, it may help them get them used to the world around them.

Get support. Whether online or face-to-face, support from other families, professionals, and friends can be a big help. Create a village of friends and family who understand your child’s diagnosis. Friendships may be difficult, and your child will need support in maintaining those friendships. Support groups can be a good way to share advice and information and to meet other parents dealing with similar challenges. Individual, marital, or family counseling can be helpful, too. Think about what might make your life a little easier, and ask for help.

Look into respite care. This is when another caregiver looks after your child — inside your home, outside of it, or both — for a period of time to give you a short break. You’ll need it, especially if your child has intense needs due to ASD. This can give you a chance to do things that restore your own health and that you enjoy, so that you come back home ready to help.

You can identify or form your respite support team using these methods:

  • Ask your friends, family, and other parents you know for support connections you might not have thought about.
  • Check with your child’s doctors, therapists, and teachers for ideas or referrals. For instance, a teacher’s aide you really like might enjoy babysitting in their free time.
  • You can also post notices for childcare help in newspapers and online, local religious communities, and at colleges and universities near you. Be sure to check all references carefully.
  • Join a support group for parents of autistic children. Find out what works for others. You can find self-help communities by calling a local autism support center or looking online.

Take care of yourself. As a caregiver, you need to keep your body and your mind in tip-top shape so you can face the challenges that crop up from day to day. This means slowing down and looking for ways to take care of yourself so you’ll have plenty of you (physically, mentally, and emotionally) to go around.

Cut your stress. Parents of kids with ASD often face more stress than those who deal with other disabilities. If left unchecked, caregivers can face breakdowns in relationships and even psychological disorders. Stress can affect your health, too. Stay organized to help yourself avoid getting overwhelmed. This means finding time in your day just for yourself. Some important and even fun ways to do that include:

  • Pinpoint the real causes of your stress. If you feel overwhelmed, break down the major issues you’re facing into easier bites. You’ll feel better, and you’ll have a plan. may help, too. Pay attention to your thoughts and the way you talk to yourself. It’ll help you weed out useless worries.
  • Exercise. You don’t need to go to the gym. Walk, work in the garden, swim, even dance in the kitchen. These are easy, effective ways to get some exercise.
    • If you want some adult company, take an exercise class. It’s a great way to recharge your batteries and meet new people.

    Get balance in your life. This is the key not only to facing life’s challenges, but also keeping a high quality of life. Your whole family will benefit. Book time in your weekly calendar for fun and socializing. Try these tips to add balance to your busy days:

    • Find your friends. Yes, you’re the parent of a special-needs child. But you’re a person, too. Remembering that you have your own identity makes you a better parent. Take time to reconnect and laugh with your friends. You’ll be glad you did.
    • Take up old hobbies. Track down your knitting needles, dust off the piano, or get out the golf clubs. Try new activities that catch your eye.
    • Take five every day. A few extra minutes first thing in the morning can center you and set the tone for the whole day. Gather your thoughts, take a long, warm shower, or jot some notes in a journal.
    • Make it quick. Can your partner or other family members take over parenting duties for a bit? A quick walk around the block or short drive to the store — by yourself — will give you some much-needed time to yourself.

    Sources

    Autism Society: “Facts and Statistics.”

    Working Mother: “Parenting a Child with Autism.”

    Autism Speaks: “Assembling Your Team,” “Autism Moms: 5 Ways to Take Care of You,”

    “11 Tips for New Autism Parents.”

    Pediatrics: “Psychological Functioning and Coping Among Mothers of Children with Autism: A Population-Based Study.”

    In today’s day and age, it seems our whole world revolves around smart phones, tablets and the internet. “Google It!” or “I’ll ‘friend’ you later!” or “Did you see that Tweet?” are just a few of the popular phrases associated with the internet and online social networking that can be heard almost everywhere we turn.

    The goals and uses of technology are very different for adolescents and young adults. These tools can be very empowering for adolescents transitioning into young adulthood, especially for individuals with autism. Technology can help your child become more independent, work on his or her challenges and improve upon his or her strengths.

    How Technology Can Help

    Below is a list of just some of the ways technology can help your child:

    Communication

    Likely the most common use of technology to help children and adults with autism is to improve communication skills. There are hundreds of apps and many built-in features of these devices that can help support individuals with autism at all levels and abilities. One app for example could be geared toward a nonverbal child or adult, while another can help with social cues for an individual with strong verbal communication skills.

    Visual schedules

    Visual schedules on tablets can be a great tool to help your child complete tasks and work on skills like self-care and daily living. For example, a visual schedule for an evening routine can help him or her learn to manage time and gradually master a routine on his or her own – from an after school snack, to homework, to teeth brushing and everything in between. These visual schedules can be very helpful in helping your child learn independent living skills, among others.

    Decision-making

    Individuals with autism who have more difficulty communicating can use technology to make their “voices” heard regarding decisions, which helps foster the self-advocacy skills that are so important as they age into adulthood. You can start small, like instead of ordering for your child at a restaurant, he or she can use a smartphone or tablet to point to the item he or she wants.

    Motivating tool

    Technological devices like smartphone and tablets can also serve as motivation for your child. The use of an iPad or a favorite game app can serve as a reward for positive behavior like the completion of a chore or a homework assignment.

    Video modeling

    Video modeling is a method that involves teaching skills in a visual way. The video could be of the individual him or herself completing a task or assignment, or of a teacher, educator or parent teaching the skills and steps required. Your child can watch these videos as often as he or she likes/needs to help learn important skills. Because the videos involve using a tablet or smartphone, he or she is most likely more interested in learning the skills this way. Video modeling can help with a wide array of skills including hygiene, job tasks and more.

    Social networking

    It can sometimes be easier for an individual with autism to socialize via social networking than through the more traditional methods. Making friends or communicating with others online can help him or her work on the skills that might translate at school, work or out in the community.

    Vocational assistance

    Technology can be very helpful to some young adults and adults with autism in the workplace. For example, step-by-step checklists can help your child stay on top of tasks and complete them in an orderly and successful manner. Reminders and notes about each task in case he or she forget something, rather than continuously asking an employer or coworker, can also help your child become more independent in the workplace.

    A ‘transition is deemed to be a change from one state or phase of life to another or a change in conditions. Transitions arise during the course of ones’ life and all children and young people face countless transitions as they move from childhood through puberty and adolescence to adulthood; they also move from immaturity to maturity. Some children and young people experience many different types of transitions such as emotional, physical, physiological and/or intellectual.

    Transition periods can be either an exciting or unpleasant time for children and young people. It is often believed if a child has positive relationships the transition can be easier on them. Children and young people need strong attachments. They need regularity, trust and a good bonding whether it be with their teaching assistant or class teacher. Having that one person in which they can trust will make transitions easier. Children with positive relationships are more efficacious academically, they will feel cared for, valued and respected.

    They are more confident to explore and have more self-esteem and confidence and therefore they feel more relaxed more relaxed during their time of transition. However there is a flip side to children having strong positive relationships. It may make it far more problematic for the child to accept change and the prospect of moving on and meeting new people and building more relationships may become extremely daunting. A child may feel that they cannot trust any other adult besides those they have spent the ac

    ademic year with, this can lead to feelings of insecurity.

    At Hallsville Primary school we want our pupils to experience a smooth educational and emotional transition from one phase of their education to the next whether that is the transition from nursery to reception or year 6 to secondary school. The children and parents are encouraged to be actively involved in the process and their views about transitions are explored and appreciated. At Hallsville Primary school transitions are never disregarded but facilitated through planning well in advance.

    Time is planned for termly eetings between Nursery and reception, and reception and year one teachers and support staff to discuss on going assessments and profile information. As a one to one teaching assistant within year 6 I aided a child through his transition to secondary school. The child and I had a very positive relationship which was both a help and a hindrance. T was a boy on the autistic spectrum. During his annual review it was discussed that T would be able to visit his new school regularly, they also discussed all the new and exciting opportunities which would be open to him at his new school.

    We physically began T’s transition as soon as he had sat his S. A. Ts. However it had all been planned many weeks before during his annual review, We went on weekly visits to his new secondary school during different times of the day to enable him to see his new environment at various times. We also began to phase him into wearing shoes and this had become a bone of

    contention with him; he was adamant he would not wear shoes only trainer’s. Due to the good relationship we had I was able to convince T to try wearing shoes for just 20 minutes a day so his feet could get used to them.

    I complimented him on how smart and handsome he looked whenever he grew agitated. This continued for weeks. We also got him used to reading a timetable and writing his homework in a dairy. I escorted T to his induction day at his secondary school and sat with him during his lessons, at the end of the day T was introduced to his new TA however he found this extremely confusing as he had assumed I would be coming to his new secondary school with him.

    This became a massive issue for T as he felt our relationship should continue on into his secondary school education. This made me become more aware that he needed to develop independence from me, so the school agreed to begin to pull me away from his class for one lesson a day to start with. This was successful, as it allowed T to see he could function without me which decreased his anxieties.

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    Support and advice for parents and carers of autistic children, including support to develop a greater understanding of their child’s needs and accessing services that meet the family’s needs.

    Support programmes for parents and carers

    EarlyBird (under five years), EarlyBird Plus (ages four-nine), Healthy Minds and Teen Life (ages 10 to 16) are support programmes for parents and carers, offering advice and guidance on strategies and approaches to working with young autistic children. The programmes work on understanding autism, building confidence to encourage interaction and communication, and understanding and supporting behaviour.

    EarlyBird

    EarlyBird is for parents whose child has received a diagnosis of an autism spectrum disorder and is aged under five.

    The programme aims to support parents in the period between diagnosis and school placement, empowering and helping them facilitate their child's social communication and behaviour in their natural environment. It also helps parents to establish good practice in supporting their child at an early age.

    "Whilst there is no magic wand, EarlyBird is the closest thing you could wish for." Parent

    It will help you understand your child's autism; get yourself into your child's world, make contact, and find ways to develop interaction and communication; and and develop understanding of your child’s behaviour and how to use structure to support them.

    The programme draws from well-established practice in the field of autism. The approaches used include:

    • the National Autistic Society SPELL framework
    • techniques from the TEACCH approach
    • Picture Exchange Communication System (PECS).

    "The knowledge we have gained has given us more confidence to analyse problems and hopefully prevent them rather than lurching from one crisis to another." Parent

    We work with six families at a time. Two places are allocated to each family. The programme lasts for three months and combines group sessions with individual home visits, when video feedback is used to help parents apply what they've learnt. Parents will have a weekly commitment of a two-and-a-half hour training session or home visit, and to ongoing work with their child at home.

    EarlyBird Plus

    EarlyBird Plus is for parents whose child is between the ages of four and nine who has received a diagnosis of an autism spectrum disorder.

    The programme aims to promote a consistent approach across setting e.g. home and school, by encouraging parents/carers to attend the sessions with a professional who is working regularly with their child. We work to build both parents' and professionals' confidence and encourage them to problem solve together. Parents are able to choose to attend the programme without a supporting professional if their school are unable to release a staff member or invite a professional from a different setting who supports their child.

    "EarlyBird Plus is an absolute must to help you begin to learn and understand how your child's mind works." Parent

    EarlyBird Plus uses the established EarlyBird framework of increasing autism knowledge before considering communication, developing understanding of their child’s behaviours and considering strategies to support them.

    We work with between three and six teams (parents and a local professional) at a time. Two places are allocated to each family with a third available for their local professional or another supporting adult.

    "Having the opportunity to discuss things with both his parents and other school staff was invaluable." Professional

    EarlyBird Healthy Minds

    The EarlyBird Healthy Minds programme is a six-session parent support programme to help promote good mental health in children with autism (including Asperger syndrome). Healthy Minds has been developed in response to recent evidence which indicated that a high percentage of autistic children are at risk of experiencing mental health problems in adolescence and adulthood. The programme aims to help minimise this risk.

    Who is the programme for?

    Three places are allocated on the Healthy Minds programme: two for families whose child is in Key Stage 1 or 2, and one for an accompanying professional.

    Autism-experienced professionals run the programme for families in their local area. The professionals are trained and licensed by The National Autistic Society’s EarlyBird team. Sessions are run weekly for six weeks and last two and a half hours.

    What are the aims of the programme?

    Healthy Minds aims to empower parents, carers and accompanying professionals to understand more about the mental health issues that autistic young people may face.

    During the six Healthy Minds sessions, we will look strategies that can help autistic children to:

    • build self-esteem
    • increase confidence
    • reduce anxiety
    • develop resilience.

    Teen Life

    Teen Life is a six-session programme for parents/carers of young people aged 10 to 16 years on the autism spectrum.

    Programmes are run for up to six families at a time. Each family is allocated three places on the Teen Life programme: two for parents or carers and one for an accompanying professional.

    The Teen Life programme aims to empower parents and supporting professionals to understand more about how autism is experienced by autistic teenagers. Topics covered include understanding autism in teenagers, women and girls, self-esteem, spending time with other people, stress and anxiety, behaviour, puberty, independence skills, education strategies and planning for the future. A Teen Life Programme Book will be provided for each family to accompany the programme.

    "What a course! I would strongly recommend any parent with a teenage child on the autism spectrum attend this programme." Parent

    The aim of the Teen Life Programme is to bring parents together to share information, experiences and ideas in a structured way. Teen Life emphasises the importance of autistic perspectives, with a variety of videos and quotes used throughout the sessions.

    "We have really enjoyed attending the course as a couple and meeting other parents of autistic children. It is interesting to discuss experiences and also share advice with other parents. We have learned a great deal, which we feel will keep us understanding our son better. Attending the course has also helped me in a professional capacity." Parent

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    Social Emotional Development: Ages 5 – 7 years

    • Measures own performance against others
    • Feel more comfortable spending time at other places without you (i.e. a relative’s or friends’ house)
    • Continue to develop social skills by playing with other children in a variety of situations
    • Be able to communicate with others without your help
    • Start to feel sensitive about how other children feel about him or her
    • Not interested in playing with other children
    • Not able to share or take turns with other children
    • Dependent on caregivers for everything
    • Extremely “rigid” about routines, and becomes extremely upset when things are changed
    • Extreme difficulty separating from you
    • Is too passive or fearful, and does not want to try things other same age children are doing
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    The therapist at Child Therapy Chicago was absolutely amazing with my 6 year old child. My child grew to trust her and they truly connected. Through this trust and connection, the therapist was able to get to the root of the issue and we were able to resolve the issue. The staff at Child Therapy Chicago truly cared for my daughter’s well being and proved to be a great support to me as well. The work with Child Therapy Chicago will serve my child through her life.

    There are few challenges more difficult than going through divorce and having a child with special needs. As a divorced, single parent of a beautiful daughter with special needs, I can tell you that you realize immediately that the burden of future planning, well-being and protection fall squarely on your shoulders as a custodial parent. It is the daily living and ordinary moments that test your self -reliance and capacity to parent alone.

    When there is a child with special needs involved in a divorce, issues of child custody, visitation, and support and property division are significantly more complex to negotiate. As part of your divorce, make sure you consider globally what your child’s special needs are and have your attorney walk you through a “day in the life” of caring for your child.

    Child support charts do not address the extra expenses of a child with special needs. There is increased need for specialty medical care, services, and equipment; for non-prescription treatments, vitamins and nutritional needs; for paid respite care for the custodial parent. Uncertainty about the nature and cost of future care makes it difficult to estimate disability-related expenses in a divorce agreement.

    From a legal perspective, the goal is to identify and understand how to determine the child’s best interests. Here are some examples:

    • With whom will the child live?
    • How much contact (previously termed “access” or, in some jurisdictions, “visitation“) will the parents, legal guardian or other parties be allowed (or required) to have?
    • To whom and by whom will child support be paid and in what amount?

    A parenting plan should spell out essential information and instructions. A good starting point is to explore how much you and your spouse agree concerning your child’s disabilities and abilities.

    In structuring a divorce agreement, special care must be given to parenting arrangements, estate planning and the child’s transition to adulthood. Legislation and case law are evolving in this area as more family lawyers deal with a burgeoning number of cases involving children with special needs.

    In the divorce agreement, care must be given to unique issues that arise in the child’s transition into adulthood, such as guardianship, eligibility for quasi- government or private agency benefits, employment, recreation and social skills, independent living, or custodial care. Typically with developing children, child support and custody end at age of majority or when they graduate from college. Divorcing parents of children with special needs who have severe impairments face the reality of life-long care-giving and, perhaps, co-parenting.

    Alimony (spousal maintenance) and child support payments need to consider the child’s eligibility for public benefits as both a minor and adult. It is essential that your family law attorney work with a special needs attorney and an experienced financial adviser to eliminate risk of forfeiting the child’s entitlements. Divorce attorneys do not always know how child support payments made directly to the custodial parent interact (negatively) with “means tested” government benefit programs like SSI and Medicaid. In-kind alimony and/or child support should be considered in order to preserve government benefits. It is critical to address these issues during the divorce process.

    Managing the care of a child with special needs is often a full- time job and the effect on the custodial parent’s income should be considered when establishing spousal maintenance. Since caring for your child with special needs may extend well beyond age of majority, you need to tailor your divorce agreement for the long-term. Use appropriate special needs trusts, in coordination with public benefits and in contemplation of gifting plans and long-term care insurance. Effectively channel support obligations and parenting plans in the divorce settlement to provide for more quality of life expenditures for the child.

    Make the system work better for you and your family by taking a practical look at what special needs exist and how they are appropriately addressed in the arena of divorce.

    Lili A. Vasileff, CFP®, CDFA™ is President of both the international Association of Divorce Financial Planners and Divorce and Money Matters, LLC, a private divorce financial planning practice. She is the co-author of The Ultimate Divorce Organizer: The Complete Legal , Financial and Personal Guide to Divorce.