How to Start Preparing for Adulthood With an ASD Diagnosis at Any Age
It is hard to imagine adulthood or even begin thinking about it when we have so much on our plate daily. However, we do need to start thinking long-term and at the bigger picture. One thing we can count on is that our children are going to grow up.
According to the research on autism and adulthood, every year over 50,000 children on the autism spectrum are turning 18 years old. As more people with autism are launched into adulthood, the more services will be needed. Research shows most families and professionals are not prepared.
According to the A.J. Drexel Institute, most autistic individuals do not have the skills and experiences necessary to navigate it to their fullest potential. They experience lower numbers of employment, educational experiences, and independent living in comparison to their peers with and without disabilities.
Now that we briefly looked at a lot of the negative outcomes that can appear in adulthood, let’s focus on what is working for those who are paving their own way and have a high quality of life. Many have found fulfilling lives through exploring and finding a job and career they like and are a match for, pursuing education and training of their choosing, and living with self-care, independence, and daily living skills.
Note that we will be discussing skills and factors that are important to consider for your child at any age and across the spectrum, as well as how you can get started today in supporting your child to pursue his/her own paths and success in adulthood.
We have found that those who have focused the following skills and factors are experiencing more success in adulthood: seeking and applying for services, promoting independence, and building self-advocacy skills.
Seek and apply for services
Services are always worth noting, particularly because not a lot of families know which services services provided in the school setting are also available in the community. Services such as the Medicaid I/DD waiver can be a helpful resource for families in gaining services such as respite, skills-focused programming, access to community programming, as well as more supports focused on adults, such as job coaching, day programs, and more social recreational programming.
The wait lists for these services tend to last many years, so families who have not yet applied should seek them as early as possible and pass the word along to others. Many of the families I have worked with, including my own, learned about the Medicaid waiver (called the Innovations waiver in my state of North Carolina) while their child was in elementary school and gained a slot towards the end of high school.
Independence is a key gateway skill for many reasons. Research suggests independence is one of the most commonly reported challenges for adults on the autism spectrum, shared by adults themselves and their caregivers. Independence is an umbrella term for self-care, daily living, and completing tasks without relying on prompting from others; it is foundational to social communication, adaptive behavior, and vocational skills.
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Something to consider is the amount of prompting we do on a day to day basis, especially for skills you know your child can do on his/her own. Visual schedules and other supports can be helpful to children on the autism spectrum in building their own routines in the morning, after school, at night, and for hygiene routines as they get older and reach puberty. Autism Grown Up has resources focused on promoting independence with these strategies.
Visual supports such as checklists, post-it notes, and other types of visuals can be incredibly helpful for communicating the expectations for an activity as well as teaching it. First/then is a common visual support to show what is happening now and what is happening next.
An additional tip is to allow for mistakes to happen and time to lapse—small steps towards independence are still steps towards independence. Sure, your child may take longer to get dressed in the morning as a result, but over time that can quicken as he/she will make more of his/her own choices and will not rely as much on you as a result.
Independence in activities and routines also leads to building self-advocacy. Teens and adults on the autism spectrum advocate for themselves and their needs less in comparison to their peers with and without disabilities.
Research shows this can have a lasting impact on decisions, mental health, and perceptions of support throughout adulthood. However, our actions can support the development and practice of self-advocacy and are very easy to start working on today with your child.
A great starting place is to think about the choices that occur during the course of the day. Does your child get to choose his/her snacks after school? Or what toys he/she gets to play with? Or what activities to pursue when he/she has a break? We can also use these with visual supports and provide options visually. These will help communicate the options and that his/her decisions make an impact.
When your child reaches age 16, the IEP team is required by IDEA to invite him/her to attend his/her IEP meeting. I recommend thinking about how we can support his/her success at the IEP meeting. He/She can create a booklet, PowerPoint presentation, video, or Animoto to share his/her strengths, interests, challenges, and goals for life after high school.
Involving your child in the discussion often shifts his/her transition plan and programming to be more focused on his/her transition needs and goals for his/her next best steps. We can have all the assessments and prior IEP goals, but when we have your child in the room, planning becomes more supportive, specific, and realistic. Finally, this also builds awareness of adulthood and is a great practice for your child to learn more about writing, setting goals, and making decisions.
Ultimately, it is important to think ahead when it comes to adulthood. We can find ourselves easily thrown into the day to day needs and demands for our children, but at the end of the day, you may catch yourself thinking about what adulthood would look like for them. It’ll be here before you know it!
Seeking services, promoting independence, and building self-advocacy are a framework to consider as your child grows up. These are the ways, supported by research findings, that can make a difference into adulthood, but you can also start focusing on and setting gains today.
You are their biggest and most influential coaches. When you put these skills and factors into place, then you can make your everyday run smoother and easier over time, and once they become adults, you will have a better and bigger picture of what life will look like for them and you.
A.J. Drexel Autism Institute – Life Course Outcomes Program and National Indicators Report
Autism Grown Up Resource Center
This article was featured in Issue 103 – Supporting Emotional Needs