This story is a direct re-print from the blog at Autism Speaks and a re-post by Lisa Jones, published on July 26, 2021. Lisa is the mother of two from Boston. She was an early intervention teacher assistant for 14 years. Currently, she spends her time being an advocate for her daughter Allyson who is 22 and autistic.
"My daughter Allyson is 22 years old, she is so sweet with so much determination. Allyson wants to learn to be independent. The past 22 years have consisted of IEP meetings, ABA sessions along with school and medical evaluations and neuropsychology evaluations. The road has had its challenges. We have spent many days and hours during the past several years putting plans and programs in place for when Allyson turns 22. Now that Allyson is 22 she has aged out of the system. At age 22 school is done, transition programs have ended along with IEPs. I was once was told you need to have plans in place, otherwise it feels like you are going off a cliff. That’s how it was described to us. I took that advice to heart and got to work so we were prepared for that day.
As a parent it can be unnerving having a special needs child in the adult world. Having to teach them to be as independent and safe as possible. I think it is a process and it is not completed overnight, it’s on a day to day situation.
Here is an example, I often take Allyson to Dunkin' Donuts where she goes in by herself and always uses her card, I rarely give her cash mainly because cash is very challenging for her, but this particular day I gave her cash. She usually she comes out with a big smile, filled with pride that she did it independently. This time she came out in tears, the reason, they neglected to give her all of her change. Allyson knew there was something not right, she knew she did not get the right amount of money back but was not sure how much she should have gotten. The way Allyson explained it, it did not appear to be an accident. The result, I went back and spoke to a manager who provided the rest of her money along with several apologies. I was upset and couldn’t believe someone would take advantage of her that way. This is what I have learned, I realized it happens probably more times then not. They may not know what her disability is but they can certainly tell there is something different about her maybe its the lack of eye contact or the way she presents herself or even the anxiety that slips through. Whatever it is its not ok. People like Allyson should be treated with compassion and the same respect as any other person.
This one negative experience does not overshadow all the amazing things Allyson has accomplished especially in her youth. A few examples are when Allyson was a senior in high school she was the only special needs student to received an award for all her participation in physical education she also would take piano lessons every Saturday morning at the Boston Conservatory. Allyson was never able to walk in any place by herself or communicate to others what she wanted now Allyson not only can walks in to a store or restaurant she can communicate exactly what she wants without assistance I realized all we can do is fully utilize the programs we have in place for Allyson to help continue to teach her and provide opportunities for her to practice these life skills to make her as independent as possible.
For more information and resources on the journey to adulthood, check out Autism Speaks' Transition Tool Kit and Roadmap to Housing and Residential Supports for Autistic Adults.