I feel as if I am stuck in a big ole pit and the harder I try to climb out, the more sh*t gets piled on top of me. Its a big heap of crap. But, this isn’t a pity party. I am not all sad and gloom, if anything, I am a lot happier than I have been in a long time. This past few months are some of the best I’ve ever had–mentally and life wise. Its also been some of the biggest moments of self-discovery, self-acceptance, and self-understanding. So, a lot of this good in my life is credited to that.
But with this understanding, comes frustration due to how society views and lacks to help me. Now I understand what I need, what my struggles are, and where they stem (mostly, I’m not a psychologist but I kinda feel like one.) Society though, seems to lack the tools I need to get to that good place where I wanna be.
So, this post is about society’s lack of support and assistance for autistic ADULTS. And I mean, good, genuine support. Not that Autism Speaks nonsensical hatred. Before diagnosed, I was fairly ignorant to this topic because I had been (and still am) a respite caregiver for autistics, many who were adults. I thought that they had many options for assistance. BOY OH BOY, was I wrong. And I am very tired of it.
Adulthood has brought me many challenges that I actively want to work on, but how?
I need a new doctor, being chronically ill with a rare condition makes finding a doctor extremely hard already. But, now I need one that has understanding of autism in adults. Because I need medications for my anxiety again, but my anxiety mixes with my autism and sometimes the meds cause bad effects on my atypical brain. So, a doctor needs to understand both conditions and how the heck they mix, mingle, and fight each other in my messy mind.
But, there is not a single doctor in my city that specifically has any intensive understanding of autism in adults. And when I called most of the hospital in this city and explained my situation, I have been getting these responses, “We don’t have any doctors that work with adults on the spectrum.” “We wouldn’t be comfortable working with you, because we don’t know enough about it.” “We have a doctor that will work with kids on spectrum, but not one comfortable with adults.”
Its not really the doctors and nurses faults, they didn’t learn it in medical school. But, they really should have. Since my autism diagnosis is on my medical record, doctors don’t even speak to me directly. They talk to me like a child or ask to speak to my mom. Its incredibly frustrating because I am reminded constantly by the medical system I am no longer a child, cannot get those services, yet am still always treated as one.
Its like the second autistic people turn 18, we are expected to grow out of it and no longer struggle. For me though, now that I am an adult, with a heavier load, and a whole much more independence, I need more support than ever.
I need a doctor who can help me medicate and manage. I need a support group where I can talk to others like me that isn’t through Autism Speaks, only for kids, or for parents. Where are those? I need someone to talk to about how I know what I need to do but don’t know how to get there. How my autism makes me want to scream in my lecture hall because all the little white noise makes my mind fuzzy. But, there are no therapists for autistic adults. Mostly just for kids or options for harmful therapies.
I managed to find therapist who only works with kids on the spectrum but accepted me anyways. And then, proceeded to drop me as a patient because I could not call to cancel one appointment. Which, I told her prior, calling gives me severe anxiety and I would appreciate if I could contact her some other way either it be email or what have you. Her response, “Absolutely not.”
How could you be a therapist for autistics and not be slightly understanding of our social struggle?
Because now I am without a doctor, without a therapist, out of my anxiety medications and in desperate need for a new prescription. I have no people to talk to that genuinely get it. I want to do better, but its a tough hole to get out of alone.
There needs to be more genuine understanding: from autism organizations, from healthcare, from schools, from society. More support for us once we turn 18.
I will continue to search, self-advocate, and advocate for others because it shouldn’t be this difficult just to find assistance.
(If anyone has advice or places to go to, please let me know.)