By Lisa Morgan MEd CAS
Autistic adults who are now in their 30’s and older are a unique group of people twice over. First, they are unique because they are autistic and second because most of them grew up undiagnosed. In the US, autism did not become a common word until the 1960’s, even so, it was still extremely rare to have a diagnosis of autism in the 60’s and 70’s or even 80’s. School kids were helped by IDEA (Individuals with Disabilities Education Act) from 1975 and beyond, but at first all kids were labeled “disabled” and the techniques used to help them were scream rooms, restraints, and verbal abuse. Autism was first listed in the Diagnostic and Statistical Manual of Mental Disorders (DSM) in 1980, but before that autistic school kids were on their own.
It was brutal. Imagine knowing you are different from your peers, but not understanding why. Try to picture how it felt to be constantly bullied and rejected because you don’t fit in, and in your own mind agreeing with your perpetrators – due to the innate knowledge that you are the outlier among all the kids who fit nicely under the bell curve of ‘normal’. It’s kind of like walking around getting kicked repeatedly – not knowing you have a “Kick Me” sign on your back.
Finally getting a diagnosis is like someone showing you the note on your back… and then all those years of being kicked start to make sense. This group of unique autistic adults who grew up undiagnosed, fending for themselves, and living through social hell – are getting diagnosed later in life and have amazing skills they managed to learn all by themselves. These autistic adults have steered their way through grade school, college, careers, marriage, and parenthood gathering incredible amounts of wisdom along the way.
Many are now advocates for the autism community in different areas, including the workplace, relationships, research, crisis supports, and daily living. These autistic people have dedicated a big part of their lives to helping other autistic people not have the same experiences they had growing up. There will never be a group of autistic people who grew up like they did during those lost years when the majority of professional people just didn’t know about autistic kids and how much they struggled.
Treasure these people folks!
They are subject matter experts in autism with up to 70+ years of experience. Glean all you can from these unique people. Once they are gone, there will never be a group of autistic people with such rich traumatic experiences, knowledge of how rejection and bullying eat away at one’s sense of self, or how it feels to deny who you are as a person (mask/ camouflage) just to ‘fit in’ with society in general.
Researchers – work with these people who want to help as much as possible.
Educators – learn as much as possible about the school experience of these autistic adults.
Medical and mental professionals – find out how you can do better in communicating with these people in getting their needs met and so other autistic people might have better care moving forward.
And finally, if you are in this unique group of autistic adults, this is your chance to make the world a better place for all autistic people. You are the only ones who will ever have the experiences of having lived through growing up when so little was known of autism.