I’m speaking to you as a parent of a 34 year old son on the spectrum who now lives with me full time. I’m also integrating all of my years of experience as a licensed mental health professional (39 years to be exact). I am often standing on both sides of the fence and looking at the issues that my son and I face from a professional lens and as a parent. Autism is a genetic condition. Many of us either have the traits ourselves, married someone who is on the spectrum and most likely had a parent and a sibling on the spectrum who would have never been diagnosed. My son was born in 1991 and diagnosis was an ongoing challenge. Because of research I had done in college with a behavioral psychologist back in the 1970s, I knew right away that my son had all the markers of autism. Unfortunately the pediatricians, teachers, school psychologists and therapists did not know much about the features to look for which was so frustrating! Finally at 19, I found an expert who conducted a 3 day evaluation of my son, me and he reached out to the schools. Mark always had an IEP and special ed pre-k and pull out services through school. At 4 he wasn’t talking well and was not potty trained. The special ed Pre-K got him talking and toileting but they did not diagnose him either. There was quite a bit of ignorance in the early 1990s even in NYC where I lived. We had so many evaluations with so many specialists and tests and tests and more tests. I felt vindicated when the autism specialist said to me, “How did Mark get to 19 without a diagnosis?”. Now I know that isn’t so unusual.
This story is not uncommon with older parents of adult children with autism. We have our own unique set of issues now. We are laying the groundwork for future generations of kids with autism and especially for their parents. Families that deal with autism are often isolated from the normal social milestones. There is loss because many of us, depending on our childrens’ abilities have not enjoyed weddings and grandchildren. Our friends “just don’t get it” and everyone is full of advice on how we can better care for our autistic kids. That can be exasperating and make us not want to share our concerns or challenges, even with other parents with kid on the spectrum.
Fortunately there are some great resources developing now for alternative housing. We get to an age, perhaps in our 60s or older when we have to face the fact that whatever we’ve been doing to support our adult child, we will not be here forever. How will they function without us? Many a parent has been kept up at night fretting over the future of their child.
I hope to form a network of parents in this group who can come together and share the information they have learned with one another and support each other through the process of exploring options. In my case, I tried and paid for privately, lots of excellent programs that were a big help. Unfortunately in the end, my son has regeressed in his 30s and those abilities that I know he has, aren’t being used. The reality I have come to terms with finally, after trying everything available, is that in his case, he needs more supervision than even a structured program can provide. His abilities are often overestimated and counselors and support staff are fooled by his ability to cover up what he cannot do or won’t do. The idea that “if you don’t do it for him he’ll eventually do it himself” has never worked in my case. I’ve raised him as a single mom and his father never seemed to really understand how to deal with him, nor did family members. He was eventually left out of major events in the family and is ostracised. He does work part time and has for more than 10 years in different jobs because we moved a few times. I’m his power of attorney due to his inability to manage or understand the value of money. He’s been taught. It’s not that he wasn’t taught.
So often the parents are blamed for any skills that aren’t being executed and this is where the professionals can knock heads with parents in these circumstances. “If only” we say to ourselves, “If only I was a better parent” then they would do all the things that are necessary to become a full functioning adult. This is only one category within the spectrum. It’s specifically for those who have adult children that don’t retain the life skills after they have demonstrated that they do know them. For whatever reason, in safe environments they can “do it” and then if there is a change in the family, a move, a divorce, a death, loss of a great caregiver, then those skills die along with that which was lost.
Parents of autistic adults are the most resilient, creative and resourceful parents. We are solely dedicated to helping our adult children and often we are critisized for that. Creating a network online to share our thoughts and ideas without giving each other advice is my goal to let others in the autism community know that we are in a different category entirely.
Email me at deborahsimonlcsw@gmail.com if you would like to be part of this free network as we move forward with our ongoing challenges
