The Late Diagnosed Autism Journey
I don’t know where to start as many as many who are autistic and/or ADHD understand. My post might be fragmented, erratic, poorly organized and sometimes probably irrelevant but in order to tell my story I have to just start. Part of my story will be relatable. Other parts will seem foreign but it’s incredibly important to me because I felt invisible and confounded by life for 44 years.
I am 44 years old. I was recently diagnosed by my psychologist just a couple weeks ago. Some people don’t believe that self diagnosis is legit and only a professional diagnosis can be considered legit. I advocate that self diagnosis is legit. There are certain aspects of Autism where a professional diagnosis is useful primarily with young children so they can get the help and support they need to live full and happy lives. It’s through my own experience that I advocate for these things as an adult.
According to my psychologist, I am what is referred to as level 1, High Functioning which essentially means that I am capable of functioning in society (yes it is ableist but it is also not wrong) however certain aspects of ASD (autism spectrum disorder) primarily in sensory dysregulation, communications, emotional dysregulation, way of thinking and nuero divergencies often make it difficult to do things like make friends and/or communicate what our needs without coming off as rude, defiant or otherwise having odd or unacceptable behaviors according to the allistic world. We have certain intellectual impairments that don’t mean we are stupid, we just learn differently and miss certain things that Allistic and NT (neurotypical) people don’t because they have their own code much like ND’s have our own codes. Some of us think they are the actual crazy ones but I digress. I am not here to attack NTs but just laying out a fact.
In other words, it means that there are certain aspects that I had learned to mask or cope with to fit into that became a detriment to my well being over the years that followed because I was missed by society. Of the things that I am learning now, there truly were many reason for that and it primarily stems from a system that devalued “not useful” autistics, didn’t recognize female as part of the studies and basically, for simplicity, left us to the wolves of society that lead many of us down paths of disaster without ever understanding why the world was treating us the way they were and do.
The Key, the Missing PUzzle Piece
I recently was informed that the puzzle piece used to identify Autism and in Autism Awareness is problematic because it means to some that we are not whole people, that there is something wrong with us and that it is associated with abuse of ASD people. While I can see how that can be problematic, to me this is essential to use because it’s EXACTLY what I thought about when finding that I am #actuallyautistic.
To make sense of that, some might have trouble with the reference. I was abused, neglected and diagnosed with so many personality disorders and givens so many medications and never understanding through all that time WHY. I needed to know why. Autistics have un uncanny obsession with needing to understand. So I kept searching. There were SO many times in my life where deleting myself from existence felt like the better option. Perhaps through the grace of the gods or spirits or some other unforeseen mechanism working for me and against me, I am still here and I still kept looking for the reason WHY. I just need to know why.
So when I learned that I am actually autistic, my entire life made sense. You will hear this reference for many others on spectrum because this is essential to us. Imagine you go your whole life living this way. You have learning difficulties that aren’t being met and you fall behind in school. You’re often told to shut up, hold your tongue, you’re too emotional, you yell too much, you speak too soft, you need to look people in the eyes, you’re aren’t allowed to talk about yourself. You are being bullied, made fun of for the way you walk, the oddness of you. You don’t know when to speak, blurt out things when people won’t let you speak. You’re constantly cut off and told things that make you feel like a bad person.
You had to learn to just wear the damn clothes so people wouldn’t make fun of you. You are being groomed against your natural inclinations to just present in the world that didn’t make sense to you. You got in trouble for telling the truth. You are constantly told that YOU don’t understand what YOU did. You are being punished for taking things too literally in what is expected of you and told you are stupid for being abstract.
You’re told to put your hands down to your side when you speak, to not speak to fast, do not stutter, you need to read out loud quickly and smoothly and then they just tell you you are a trouble maker for not being able to conform. That you make life difficult for yourself because YOU, yourself refuse to conform and that is YOUR fault. It’s your fault your face doesn’t send the right messages. It’s your fault for being to sensitive. It’s your fault, your fault, your fault for anything that YOU did that didn’t sit right with other people.
You live your whole life this way. You start with Suicidal Ideation or self harm at a young age and you don’t know why you felt that way, you just did and no one cared. They told you that there MUST be something wrong with you for needing attention, when that attention that you needed went ignored and you really felt completely invisible to the world and most hurtfully, to your own parents who forcibly kept trying to correct your behavior to fit in until all of that burgeoned into a very unhappy and unfulfilled life no matter what you tried to do to make it right.
So in other posts when I speak more on this journey I can tell you all about it. So that puzzle piece of ASD means the world to me even if it is recognized for abuse for autistic people because THAT truly is why I instantly gravitated towards that symbol instead of the infinity symbol. It’s the part that was withheld from me so that I could finally undertand completely where I fit in the world, why it happened and what my life actually looked like opposed to what I thought it looked like.
Putting that puzzle piece into place has enormous meaning to me because without it, I would still be shut in and wondering why I can’t get it right. What is missing. Trying to fit in pieces that were never going to fit and manufacturing a complete but obscured picture. What do I not understand. THAT piece is all that was ever needed for me to start to truly heal and start living my true authentic self and making sense of the whole picture not just part of it.
It wasn’t until I met my psychologist (therapist) that I currently have that these things have come about as well as and equally important, others who work on outreach and awareness for the ADS and Neurodivergent communities and awareness. My therapist and I work together on/through PTSD and staying consistent enough for her and I to really dig in and uncover what had happened. It reminds me of a book I read by Oprah Whinfry and Dr. Bruce D. Perry called What Happened to You. I picked it up free on Audible a few years back I think and it got me thinking about what actually happened vs what I think happened in order to get the right picture. Everyone has a story and that story is important to each and every person when trying to undestand their own lives. It’s most especially important to people dealing with PTSD and all the many ways PTSD can be understood. There’s a giant list of many aspects that define them under the umbrella. For me, it’s a bit of both C-PTSD and BPD but the root cause for everything that transpired in my life had one common root, I was and am #actuallyautistic.
I am going to use the hashtag because it helps people understand our stories of what autism actually is how many of us were left to make sense of a world with so many different labels, when in fact, what we are is actually autistic. We say things like “My Autism” because while we have commonalities that do define autism, we are also incredibly diverse because we aren’t all wired the same way. What I find completely intolerable, another will find tolerable and vise versa yet what is the same is our differences in processing data. This data processing is linked to sensory mechanisms in our brains which give us uniquely different levels of tolerance and how to deal with them. I will get mor into that later.
For some autistics who have had to deal with complex traumas, the unmasking can be difficult and downright scary because we don’t exactly know who we are. You might have heard people say that they don’t know who they are and thought something along the lines of jobs that were good, or what style of clothing suites you best or what you want to do with your lives in general. For us, when we are saying “I don’t know who I am”, we literally mean, we don’t know who we are because everything about us has been forced into conformity that gave us no room to explore our true selves or what we actually needed to live an authentic and happy life.
Through PTSD therapy, uncovering the past to process it is also traumatizing. Something that, for all intents and purposes, I would rather not BUT it’s also a necessary evil to go through to begin to heal and make sense of what actually happened, how it happened, and most importantly WHY it happened. In some cases the WHY will never be an acceptable answer when it comes to abuse, neglect, rape and other events however, that very same WHY is also uniquely important to many of us. Meaning, the reason others did it to you is not an acceptable answer. That because you didn’t undestand and “let it happen” is not a reasonable excuse or good answer. It simply means that there were MANY underlying causes that were placed in by the allistic (opposite of autistic) to justified certain aspects of society that has left myself and way too many others to struggle in a world that was never built for us. That is another long winded post for another day.
At any rate, some key factors have played a role in finally understand what happened. Finally being able to keep the same therapist for more than a couple months because I now have better insurance provided by through my husband and a system that is slowly (not enough and too slowly to be honest) changing and has afforded me the opportunity to do so.
That, for all intents and purposes, is one of the keys necessary to really underand my life and is likely the same one that will help others find the answers they are looking for as well. Staying with her long enough and being open enough to just be honest is also another important factor to consider. Many therapist and especially psychiatrist are dismissive and think they know you in just an hour. While having a good therapist who actually listens and works with you allows you to really open up and dig deep. There truly is a reason why having the right therapist for you and sticking with that one is incredibly important.
Doing so allows for you and your therapist to actually see the patterns and the truths. Without having that kind of comprehensive (and I am still working on so much) assessment and relationship, I would have continued through life feeling displaced, invisible, reclusive, and thinking there is something wrong with me. I feel very strongly about advocating for this because without it, I wouldn’t have solved the puzzle.
So I think I have said enough for now. Like I said before. I will keep talking about it because I have so much to say. While I am not a doctor or therapist or anything like that. I can give you specific details in understanding ASD or MY Autism because I live it. Again, #myautism might be different from other’s autism so if you find any of this relatable, then come with me as I spill the beans into the long and disastrous life of being a late diagnosed autistic and all the events that shaped my life and I assume, many of yours too.
Whether or not you are autistic, many of the aspects I speak of, I think you will find them helpful for you, for other neurodivergence’s and or to just simply undersand if you’re a doctor trying to understand us better so you can understand your patients better.
Getting A Diagnosis
I spoke a sec about self advocacy and that being valid. I also want to mention that for those of us with Level 1 or even level 2, a diagnosis from your psychologist is just as valid as getting one from Austism “specialist”. In the community, many don’t like the word “levels”. We are either autistic or we are not. I DO see it this way myself, however. HOWEVER, there are autistic people who have a significantly harder time and they do need more help. Their requirements will be different from mine and getting that sort of formal diagnosis will afford them finances and resources that they require that I don’t require. But through advocacy and outreach, we can also hope to change the system that has allowed so many of us to be left behind in almost every essential way when it comes to the school, being social, finding work or simply getting people to understand us etc, etc.
That is NOT to say that I see them as different from me. It simply means that they need things that I don’t need and those types of resources are better left for them because if I took that from them, I wouldn’t feel very good about myself knowing that even though we all struggle, I can get by without it. That is a privilege and it is a difference between us even though we are all autistic. Only you can decide if you need that or not.
Plus, can’t lie. When my therapist mentioned that I could go get that. I immediately knew that this is not right for me. I don’t need that and I don’t want that. A lot of it comes from my general disappointment with the mental health “professionals” being so wrong so many times but also it cost a small fortune and wouldn’t do anything for me at this stage in my life except further suck the life out of my small saving. The cost to benefit ratio doesn’t make good cents. hehe.
Okay. I am gonna go now. Until then, be you and know that when you learn your autistic late in life, your entire world is about to change. Perhaps not in ways you wish it would but that puzzle piece is also a key that opens the door to the things you didn’t understand and starts to rewrite the story of your life so that it finally makes sense. When I say that nothing in the world has ever been more meaningful than learning I am actually autistic. I really mean that nothing in the world is more meaningful.