Not Disabled Enough: Lack of Services for Autistic Adults
When you’re diagnosed with autism as an adult – in your 30s or later – it’s both wonderful and terrible. That picture up there kind of sums up the way I go around pretending to be normal. I’ve written before about how my diagnosis was the best thing that ever happened to me, and that’s completely true, but along with the knowledge that I wasn’t broken came the realization that there was very little help available to me. The reason for this lack of services seems to be twofold. First, almost all programs and services for autistic people are aimed at children and end between 18 and 21 years old. Second, the services that do cater to adults are mostly limited to group homes and supported employment. When you’ve made it to the age of 30 without needing that kind of help, you already have the “skills” that therapists and professionals would try to teach you, regardless of how hard you struggle to hold a job and maintain your home. Anything beyond those basics, like help with executive function issues, time management, or sensory issues, just gets referred to talk therapy, which doesn’t do the trick. (Side note, I love my therapist, but no amount of talking will get my brain to recognize more times than “now” and “not now”.)
I contacted every outfit I could find in my area that offered non-residential autism services and this is what I found.
The Arc is a private non-profit that provides support for people with intellectual and developmental disabilities. It’s a very well-known and well-respected organization, as far as I can tell, and it has a long history of doing good for a lot of people.
All that said, when I went looking for help, they had nothing for me.
In my area, The Arc offers a lot of community living resources and direct support for kids and adults to let them live at home and/or semi-independently. They provide personal care and respite care, as well as group homes and reduced-rent housing. The organization also runs some in-house employment in various fields, such as custodial services, linen services, mail sorting and delivery, kitchen services, and a few others, where they hold contracts with a few local hospitals and government agencies. I don’t know if they pay proper wages or offer any benefits, or if the term “sheltered workshop” is applicable here, but the way the program is described, it sounds like it’s intended for those who wouldn’t be able to hold any other job.
All of those offerings are great and very desperately needed and I’m overjoyed that we have these options in my community. But none of that is the kind of help I need. I emailed The Arc to ask if they had any programs that I might qualify for as a newly-diagnosed adult – to spare myself the stress of a phone call or getting time off work just to waste a trip to their office – and received a form reply telling me to call them or come in. I gave up there.
Advocacy Center of LA
The Advocacy Center of Louisiana is a non-profit that is supposed to advocate for people with disabilities across the state. I say “supposed to” because I couldn’t find any information that wasn’t confined to the New Orleans area and I couldn’t find much in the way of services anywhere.
Their website lists their services as including information and referral, legal assistance, systems advocacy, outreach and training, legislative information, and investigation of abuse and neglect. There are a few PDFs of brochures available, but they don’t contain a lot of information. I knew there was an office in my city, so I combed the website for any local contact info, but their email directory was confusing. I ended up emailing a program director or some such title asking what services they offered, only to get another form reply telling me to call or visit the local office. As a working adult, who has time for that?
A previous therapist had told me that Vocational Rehab offered therapy and training and various other things that should be helpful to me since I’d had to give up my ADHD meds due to side effects. So, when I lost the full-time job I’d held for the past decade, I hoped against hope that Vocational Rehab could help with autism-friendly job placement and ADHD coping skills. The answer to that hope has been a resounding….sort of.
Like all these agencies, and especially because Vocational Rehab is a state agency, I had to call them. Have I mentioned I hate phone calls, like a lot of autistics? Anyway, I called them to ask how I could get started with them, and the woman told me I’d have to come in for an orientation a couple of weeks away. Then, instead of explaining the rest of their process, she told me multiple times that they only had funding to help people who “really need it” so I shouldn’t get my hopes up because they could only help people who were “really disabled”. It felt like she was warning me off already, as though the fact that I had made the call myself was proof that I wasn’t disabled enough to qualify for them.
After the orientation and an interview with my counselor (several weeks apart), I did, in fact, qualify for services. I suspect that my awesome counselor was able to do this because I only asked for job placement instead of any other help I’d wanted, and I also have fibromyalgia, which prevents me from just taking a solitary but physical job like stocking shelves or warehouse work. That combination of disabilities, plus the fact that I wasn’t asking them to really shell out any money for me for therapy or training, I think is how I got in.
As of this writing, it’s been a very long process with several appointments, but it looks like I do have a job lined up – just before my unemployment runs out! Once all that is settled and running comfortably, I promise y’all an update and a full rundown of my entire experience with Vocational Rehab.
I haven’t tried LearningRx yet, because it’s pricey and I don’t have money for it just now. But it looks surprisingly promising, with literature specifically calling out adults having trouble keeping up with work, autism, and attention issues. I’m actually kind of excited about it, if I’m honest, and I’m considering asking friends and family to chip in for me to get some sessions as a birthday present. If you have any experience with LearningRx, please tell me about it in the comments!
As much as I loved getting my diagnosis, it’s frustrating and disheartening to go looking for help only to be told I’m not disabled enough. So far, I’ve been cobbling together my own therapies from ADHD strategies aimed at teenagers and extrapolations of children’s sensory therapies. This shouldn’t be the norm. Adults with lower support needs still need help, no matter how “high functioning” we are. I encourage everyone to contact your state agencies, non-profits, any place that offers autism services, and tell them what kind of help late-diagnosed adults would benefit from, so that we don’t have to make our own way in the world.
Did you look for any help after being diagnosed as an adult or did you just search out groups of other adults to talk to? Did you find any kind of help? What sort of program, training, therapy, or any other help would you benefit from most as an autistic adult?