The “do it yourself” diagnosis ( PS its the same for every other diagnosis too!)
For those of us who are middle aged and well beyond into our “senior” years, autism diagnosis has been hard fought for the most part, with sometimes years of misdiagnosis and years of struggles without the understanding that knowing of our autism brings.
For most of us, even if we find diagnosis, we are left without supports of helpful therapies, accommodations, explanations, guidance and insights .
So many of us are damaged from years of struggles and misunderstandings.
So many of us are seeing for the first time a clear connection to our painful pasts and our changing futures. What now?
Autism has been included in the DSM guide for diagnosis because it is recognized in individuals from only a behavioral clues, since there are not yet biological markers that can be used consistently for reliable diagnosis. ( if we all had green fingernails, and only autistics had those, for example).
Instead, although it is finally being understood that autism is a sign of uneven neurological development, diagnosis has been strictly through seeking unusual, or uncommon behaviors.
I do see this is changing, diagnosing professionals are now also looking for neurological differences, sensory processing struggles, differences in motor skills and motor struggles, physical signs that have a basis in our neurology as individuals.
Changes are slow coming, especially for those in our “golden years” whose time left on earth is naturally biologically limited.
So today we are diagnosed but don’t know what to do about it. Many of us need help to see how our own version of neurological differences affect us and to sort out what things we can do for ourselves to make life better.
Many people begin by seeking “autism therapy” or looking for professionals who must understand their autism in order to give aid of insight, therapy, services, etc.
For the most part there are no “autism specialists” to provide these services and therapies, help or support.
I participate in several groups for older autistic adults online as group member, moderator or administrator.
One frequent question, often from desperately confused and frustrated individuals with recent diagnosis is “where is help>where are supports for me>who is going to do something about this??” ” Nobody is helping me!!!!!! ”
I want to explain that in today’s society our late autism diagnosis is not something other people can fix for you.
Our diagnosis means lots of personal hard work to “make it better” (this is a quote from a recent interaction on line with one individual).
Autism is not a quick fix. In fact for the most part we can’t fix anything about our autism.
It is the neurology we were born with.
There are no pills, no diets, no surgeries, no training that can completely change us to be “normal” or not to be autistic. We gain insights and self understanding when we are diagnosed and are better able to then adjust our lives to help ourselves do better with the neurology we have had since birth.
Instead we need to do our own homework, including seeking help to gain insights into ourselves and our histories, our needs and our personal situations to build new and better lives for ourselves. Nobody else can do this for us.
We must look beyond our autism when we look for help. There is no “autism therapy” for recently diagnosed adults, but there are many services already in place which we can call on.
We can seek out social workers, insurance “navigators”, investment counselors, housekeepers, physicians, psychologists, coaches and employment. We must ask for help finding counseling or therapy and or medication for our anxiety, ptsd, trauma, depression, or other psychological and emotional struggles. There is no “fix it” therapy or “autism counseling” under one roof. Each problem must be addressed separately, since each of us is so different from the other. (just like the rest of life!)
We can find therapy for physical struggles, problems with day to day living requiring help such as housekeeping, help in bathing , supports and adjustments in the home, or if we live in care, adjustments to personal and common spaces which help make our lives easier.
The workers we choose to help us do not necessarily have to know a thing about autism to be helpful in finding new ways of doing things, physical help, and new communication tools, and/or help learning new behavior patterns which can help us live better lives.
We can check out community resources for housing, food, medical care, physical or intellectual disabilities, and so much more without ever bringing up our autism or expecting others to know about autism, or what it means to us.
In truth we( autistic persons) are a very small part of the general population and each of us has needs that are very different. In so many cases there are already places to go, services to seek, help with our needs already in place. Not as “autism therapy, autism help, autism support” but more narrowly , things that can and do address our individual struggles.
The part that is the hardest of all is figuring out our worst struggles and figuring out first of all what we can do to make each problem manageable.
There will always be more resources available to us where there are higher populations. In areas with lower or more sparse populations, there may be the need to relocate, to travel long distances, or to find very creative ways to help yourself live a better life. You might have to make a decision to live in places where there are more services or be extra creative about finding help online.
Nobody is going to come to your door, call you on the phone, or offer assistance just because you are autistic. (If they do, be very wary, it is probably a scam!)
It still falls upon the individuals to be responsible for themselves to find the things they need in life .
There are lots of actual medical diagnoses in life that require similar action from the individual.
Only I, as a diabetic, can make sure I take my meds, watch my diet, exercise properly, wear proper clothing/special shoes or use special furniture, or seek out special aids to make my management of my diabetes easier and help myself be healthier.
When it comes right down to it, we are all stuck in “do it yourself” positions in our lives.
Nobody cares more about our outcomes, our struggles, or the ways we can accept our limitations, work toward better health and an easier life, adjust things in our homes and daily routines.
We alone are responsible for ourselves, to make the best and healthiest decisions we can and to carry out our lives in better and healthier ways.
Nobody has more invested in the outcome.
Nobody has more reason to work as hard on my behalf (or yours) nobody will provide all the answers.
We must seek our own help, we must be responsible for our self care, we must make our own decisions about our lives and must make our own choices.
Nobody is going to rescue us because we are autistic, any more than they will do so for any other cause.
Communities of autistic folks online are a great resource for ideas and input about where to start, how to figure out your needs, how to sort and improve your life. But it will still be up to each individual to put those ideas into action.
Much of this might be self evident to many individuals, but it seems that for autistic folks, sometimes we need detailed explanations. I hope you are finding what you need.
Autism Diagnosis aftermath
The “do it yourself” diagnosis ( PS its the same for every other diagnosis too!)
3 thoughts on “Autism Diagnosis aftermath”
Well said! Although I’ve become aware of the probability that my brain is neurodivergent, it will be a few months until I can get an “official “ diagnosis. At this time in my life (mid 50s), I’ve already found what works for me, and don’t expect therapy. Realizing I’m probably on the spectrum has already helped so much in explaining why I’ve struggled with certain things all my life, and has been a great relief. What I hope to do is have confirmation, and play my part in changing the perception that Autism only occurs in children and men. If we (those who aren’t young cis male) don’t get diagnosed, the statistics won’t change.
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The lack of clear diagnosis is the rule in neuromuscular disease and takes years, years that providers say incredibly hurtful things, push worthless supplements and NOBODY cares that you need help. MD sees you in the office assuming it is easy to do so. Depression is the normal mood after an appt. Trying to get diagnosis/treatment for my autistic son in 90’s was exactly as frustrating, expensive, time consuming and still left me to DIY. I told him in a world of Microsoft minds he is a Linux , brought him home to do eclectic unschooling , life skills. Gave him full support in food, laundry, housing, emotions til he was 30 and relationship broke. I can’t deal with his issues while being crushed by mine and facing my decline, demise in my 60’s. I say this so someone out there whose parent isn’t meeting their expectations…
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I was diagnosed 2 years ago at aged 50. Many professionals still don’t, or rather, won’t even entertain my diagnoses of ASD and ADHD and I obtained them from a well respected clinical psychologist that specialises in women & girls only for that very reason. She wishes to change that stigma I face that I couldn’t be Autistic as I don’t present as the stereotypical white CIS gendered male presentation. I look at them. I smile…and, apparently the most impossible, I have empathy.
I know my reply has little to do with your post. It is just what was triggered when I reflected upon how I was received etc. I loved your post. Overall, it has been very much my experience. The online communities (the actually Autistic folk have helped me understand myself better and recall things about myself, due to masking so well, that I had even forgotten was a natural part of who I was. Being more myself has saved my levels of anxiety, depression and melt downs. Most of all, which is something I had never realised my CFS & FIBROMYALGIA & chronic migraine and SPD and overall burnout have seemed to improve since I have been able to recognise my natural stems and needs. Masking may have helped me appear to be more “normal” and fit in, but was never good for nit only my mental health but so it seems my physical health either. It has lead to lots of trauma that I believe may not have ever been part of my life journey. I need to unlearn the lifelong conditioning I have had (even the mimicking that I did myself to fit in which has led to a very fragile character structure & self esteem)
I have been lucky enough to have some brilliant MH professionals & some traumatising ones before them, but they have all helped me grow. My “neurodivergent” perk of being able to deep dive via my intense hyperfocus into a special interest (which now just happens to be psychology & now Neuroscience) has been invaluable to my growth & healing.
I am my own best advocate. My trauma doesn’t always allow me to do this in the moment & match my passion & I have had to learn to pace myself. Thankfully, my neurokin are often doing a similar kind of thing out in the community so I can find comfort in that as I continue my personal healing. I need to remind myself…that I have only been aware of my Autism for 2 years and it has been a whirlwind since then. These days, I think the biggest change is that I believe it much more…& am beginning to care much less when others don’t. I feel like I am much more willing to be able to put the information out there and leave it up to themselves to decide when & if they want to think about it. I’m kinda done trying to convince others.
I truly just need to work with others that serve MY needs in the community…whatever that may look like. I know MY Autism looks a little different due to all that is me & the beauty of being 52 is that I get to decide what that looks like. I get to make the choices of who I get to work with or who helps me thrive.
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