What to do if Autism diagnosis is negative?

Post Reply New Topic

That's easy for you to say - now that you have your diagnosis, and your signature captures exactly how I would feel too

But seriously, you do make sensible points, and I would do well to try to come round to that way of looking at things. I just want there to be an answer. I've found one, and I don't want it to be taken away from me. That is all.

Life will take away your "answers" the older you get. When you're old, you might only be able to marvel at the complexity of the world and be grateful you were allowed to be part of it for a while, with or without a paper with the word ASD written on it.

I agree with Double Retired that you want the correct diagnosis, for diagnoses are merely tools to find the most suitable support if you're struggling. Beyond that it doesn't really mean anything.

For the record, I didn't know what autism was when I got my diagnosis in my 20s. I initially needed help for depression and when the docs were confuzzled by my unusual reaction to the drugs and overall behaviour they put me in the waiting line for an assessment. So a year later I had ASD stamped to my medical history and if I want that changed now I need a second opinion, but the only way that would ever happen would be if a third party found major methodological flaws in the first assessment.

I have always been leery of giving somebody the power to diagnose me. How ever old you are - you've had that much life experience in knowing or not if you have some type of autism.

I did not start with a hope for an Autism Spectrum diagnosis. I started assuming I was the same as everyone else and, over a few decades, decided maybe I really was different.

I suspected I was "different" decades before I knew anything about Autism.

When I was 64 circumstances lead me to learn about Autism. I initially thought (based upon my ignorance) that it was extremely unlikely to apply to me. I would've been offended if someone suggested it. (Remember, I was ignorant!)

When I concluded I might be a high-functioning Autistic I knew I was not qualified to make a diagnosis that even I would trust. I searched for a professional to do the assessment; this search was made more difficult because my insurance company...who sincerely wanted to help me...did not know enough about Adult Autism Assessments to give me correct information.

When talking to the Psychologist who did my assessment I noted that I was pretty sure I was somewhere near the low end of the Autism Spectrum but I didn't know if I was almost on it or barely on it.

After she gave me my diagnosis I noted a couple of things that seemed to be inconsistent with the diagnosis. And she smiled while correcting my understanding of Autism. I was just wrong, there were no inconsistencies.

And I bought the champagne on the way home from getting the diagnosis, not beforehand.

I wasn't happy because I was Autistic. I was happy because things finally made sense.

I'm 51. I didn't properly find out about Autism until last year, when a few things came to light. A GP had suggested to me some 10-15 years earlier that I might have Asperger's. I ruled it out at that time because I did not understand that you don't have to tick all of the boxes.

And so because I felt that I can read peoples faces, and that I got through childhood without anything being picked up, I thought that I could not possible be. I now know a lot more about the subject. In a large part, because the research and readily available information has moved on so much in that 10 - 15 years.

I didn't even understand or acknowledge that I have social anxiety until the first major lock down of 2020. And I have it severely.

Nothing has made sense in my life until I discovered lots about more up to date research findings regarding ASC and the wealth of content on You Tube, and on forums etc.

I apologise if I came across as "von oben". From your story I can tell why the diagnosis makes sense to you. I can imagine the situation is different if you approach it from the road you've wandered, where gradual access to information opens up a possible explanation you previously rejected, rather than being given no choice but to accept it as was the case with Aspergers and me.

That you should be more positive in life..you probably don't have autism orbits at least very mild.

Haverish, I got Tony attwoods big book about autism and first read thought, aw this is just about children's autism. Second read I began to think about my childhood and what I was like when I was little... suddenly it made a lot of sense. "You wouldn't happen to have any information on conditions that might present with autism-like traits in adults would you?" Theresa Regan's newly revised book about adult autism is very good. "revised edition" "Understanding Autism in Adults and Ageing Adults" available on amazon, and the author's website. ( among others)

Do not worry about it.

Psychology is not a hard science. There are like 7 or so major schools of psychology, with theories often contradicting one another, and like 50 more specific varieties. For most of them, there are separate journals where psychologists public papers. Even a lot of psychiatry is based on pre-assumptions.

Point is: your diagnosis is highly dependent on background of the person which evaluates you.

And even if multiple sources verify that you are not autistic ...do not worry about it either.

There are numerous psychological and even neurological conditions and impairments that can result in similar outcomes as autism. Thus, if you have some characteristics associated with autism, even if you aren't truly autistic, this does not change anything, doesn't it? You still have those and they are real, no matter what is their source.

For example - I have been exhibiting traits associated with AS my whole life. Got diagnosis at age of 33. Months later, I was diagnosed with temporal lobe epilepsy - which started developing about 6-7 years ago, but no neurologist have identified it because MRI and EEG scans looked normal. They have all said that things I am experiencing are results of my migraines (auras). Meds I've been given didn't help. It wasn't until I was properly diagnosed and started taking lamotrigine, my quality of life and condition has improved. I wanted to learn more about my disease, especially about how it affects memory, seeing that I struglle in this area the most.

I have found a paper which described memory dysfunction in patients with TLE, but also related issues. And it turns that a whole lot of these issues are things that fit the definition of Asperger's! It wasn't that surprising, seeing that there is a high correlation between epilepsy and autism.

But the question is: is my diagnosis less valid because the person who given it was not aware that I have TLE? Are my traits magically not autistic just because their source may be different than in most of AS individuals? I do not think so.

Even if you do not have autism, but doesn't fit the typical NT model, you are "one of us" in my book. Chill, be honest with yourself during evaluation, do not worry if outcome is not what you've expected.

No worries, and no need to apologise

Yes everything makes sense now. I've already self identified as well as self diagnosed. (Maybe prematurely, but I'll have to wait and see what happens. I already know that I at least have significant traits which I am significantly affected by)

It's not that I want the diagnosis so that I can make excuses for all my failings and deficiencies, it's more that I can hopefully learn to become more comfortable with myself, and if other people that don't understand or whatever then I'm not going to be overly concerned. This has been especially difficult though because I have social anxiety. But I think that I can sense that I am beginning to become more at ease with myself and am caring less what other people think about any of my weirdnesses, since my discovery that I have Autistic traits, and probably due to my increased self awareness and self understanding due to this.

It is helping.