21 and Autistic: Transitioning to Adulthood
“People don’t outgrow autism”
After 21 or high school graduation, previously guaranteed special education services for students in the US disappears. Depending on the particular state and its funding, resources for adult services are scarce and are typically reserved only for those in some sort of crisis. For example, those facing abuse, homelessness or an illness that gets progressively worse.
As part of the Individuals with Disabilities Education Act (IDEA), the Individualized Education Program (IEP) is required to assist with a transition plan that should begin with planning at age 14 and be set in place by age 16. School systems will start asking questions for future plans and preparing for skills that will be necessary for life after graduation. This is a work in process that is reviewed multiple times a year and is subject to many changes as the teen grows up.
Here we have compiled for you, a list of resources to help you on this journey:
Autism Transition Tool Kit by Autism Speaks
Before you go any further, Autism Speaks has created a thoroughly comprehensive, easy to read, 55 paged transition tool kit that covers all the bases. As far as learning about what the transition process entails, this toolkit covers all the essentials such as development of independent living skills, legal matters to consider, employment opportunities, and housing just to name a few. So if you take any one thing from this article, this Autism Speaks Tool Kit would be it. It offers all sorts of helpful tips, options and resources that families should consider when embarking on this long often formative journey. Check it out here
Guardianship Advice for ASD Adults
Depending on where your teen lies on the spectrum, guardianship will vary. This article on the website autismafter16 delves into the realities of what comes with being an adult. For example, an 18 year old adult will make their own decisions about money, and what they want to spend it on. Subsequently, this is could affect how they treat themselves for medical care, whether they invest or if they insurance in anything at all. For many autistic individuals and their families, this much freedom is not ideal.
On the other hand, many people on the autism spectrum are productive contributing members of society but still have difficulties with certain activities that deviate from the norm of their routine. For instance, as an adult, an immediate health emergency could require the signing of a waiver for treatment, which may pose a problem if a quick decision is required and they are not capable of understanding the full scope of the situation. Read more about the specific types of guardianship available here.
Comprehensive Look at the Transition from High School to College
For those on the spectrum that have college as an option, the obstacles and roadblocks only just begin. Often, they are much greater because suddenly IEP’s no longer exist to help accommodate those with special needs. As mentioned in Interactive Autism Network’s four part transition article here, in America, college is seen as a privilege that people must be qualified for in order to participate in. They focus on a policy of discrimination prevention first and foremost, but aside from that, not much is provided in the form of extra support programs.
Interactive Autism Network delves in-depth into the different stages that someone with autism should be aware of before entering college, including: Coming of Age: The Transition to Adulthood, Daily Living Skills: A Key to Independence, Autism and the College Experience and Finding a College Program for Students with Autism.
Checklist to Prepare for a IEP Transition Meeting
The IEP transition plan begins at age 14 and meetings discussing post-secondary plans should be in place by 16, along with yearly assessments and updates. The Minnesota Governor’s Council on Developmental Disabilities has created a simple, easy to read checklist that is designed for both the guardian and special education teen to work on together in order to help prepare for IEP transition meetings.
This checklist, written by William T. Allen, was created to take a person-centred approach with the purpose of involving the individual as much as possible, particularly if they are unable to communicate for themselves. In these cases, emphasis is on the family members and friends to spend time with and observe the teen in order to discover their preferred way to live. Download the full PDF here
Video of “Autistic and aging out” ft. Temple Grandin
The rainbow that is the autism spectrum covers such a wide range of symptoms and individuals that for some college is a realistic possibility, for others it simply is not. Heidi Roger and her 18 year old son Andrew are one of the latter cases. In this short film, the weight of caregiving responsibilities start to come down on Heidi as she is forced to find alternative forms of adult care. Andrew requires assistance with everyday living necessities such as showering, brushing his teeth and getting ready for bed. As a result, the stark reality is that for families like Heidi’s, they must do their best to prepare their children financially and emotionally for a life of supervised living conditions.
Excerpts from the film include an interview with autism advocate Temple Grandin, discussing the vast range of people who exist on the spectrum and their varying capabilities that will inevitably decide their future living conditions. She emphasizes working on independent living skills way before age 18 and to really coach them like “coaching somebody from a foreign country” because nothing will come instinctively.
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