What did diagnosis bring you?

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To me that is important as for about 30 years I have thought through doctors telling me that the energy loss situations I habe been getting foe 40 years, have been down to (In the words of one doctor) "Some sort of allergy" where it was always uo to me to do the work to try to find out what the allergy or allergies are. i have asked for allergy testinb since the age of 18 and it has always been that our local doctors budgets do not stretch to allow this. I once saved up £2000 (A lot in those days) to go private to get tested and my doctor said "Whatever you do don't go private as they are a rip off" so I didn't. Finally I was tested after a change of doctors surgeries but they could only do the simple six point test, and it was shown I have no allergies to the common foods of egg, wheat, dairy etc. (Six things). This has come as such a relief as for years I avoided milk... My teeth turned to glass due to avoiding milk for so manh years... I tried to avoid wheat as wrll etc.. My diet foe years was tryinb to eliminate nearly everything and getting no where! Top it all off, years of doctors visits with the old doctors were completely wiped out from my medical records when my records were transferred to the new doctors. (My Mums werw also wiped). This aas actually a good thing as my current doctors had to start again from scratch, and I wouls never have had some of the tests again to work out what it was not... (My old doctors never seemed to share the test results... These current doctors do, so at least with these doctors I have more of an idea what is going on. These doctors have had a few complaints, but ai have to say they are in a different league to the old doctors surgery which could easily be mistaken for a third world country if one goes by its service! I found out that because we live in a rural area rhe old doctors were given £7000 a year by our government per person (3 of us) to pay so they can do house visits, and the entire time we were with them they said they don't do house visits... (Even when my Dad tried to commit suicide and the police wanted our doctor there as he had said he would talk to the doctor (The suicide tendency was due to his medication being messed up again! Life was aweful back then as doctors would not believe that altering his steroids caused issues with his mental health... And they said he had to tell them as we were not allowd to tell the doctor he was altering me tally... Despite each time the police needed to be called out and even the police helicopter and two police forces looking for him..! And we couldn't get our last doctors to help...
These doctors are soo much better I could kiss them! (Figure of speech)
Anyway. For me it will be to hopefully confirm what I am now certain of. The energy loss where my body goes limp are partial shutdowns. This will confirm to me so I never need to fiddle around with my diet ever again! Already I have started having certain things like dairy and wheat and it has made soo much difference to my life as before it was like I was a being tortured for something that wasn't my fault!
The only foods I now avoid are the ones that directly effect my throat which closes up if I have them which are artificial sweetners, most fruits and some nuts. Artificial sweenters are in so many things since the UK introduced a sugar tax, and my Mums budget hardly stretches as things with sugarnin are now taxes so for us prices have shot up which I think is unfair.

Prior to diagnosis I had decades of living with anxiety and depression over my social difficulties. I was drinking too much as a coping method, and my marriage was falling apart. Now, I have a much better understanding of myself. My anxiety has lessened, I am working on changing some of my bad habits, and I can forgive myself for things that happened throughout my life because it all makes sense now. So basically it has brought me some peace of mind and better coping skills.

That's great.

Jury duty exemption


The diagnosis was not worth $$$$

s**t

I'd agree with this. I was diagnosed with Asperger's in my mid-30s. Up to then I thought I was this awful, broken, lazy person who wasn't fit to be part of society. When I realised I'd been struggling with undiagnosed autism, I understood myself a lot better and was able to forgive myself for past mistakes. I found a formal diagnosis very helpful when I did my second undergraduate degree, as I was able to ask for support when necessary, no questions asked.

That said, the diagnosis was also a frustrating dead end. There is very little help for adults on the spectrum. It seems you can access a lot of early intervention if you're under 18 - after that, you're on your own. Even though I know what the problem is, I still feel like I'm struggling to find my niche, but I have no idea where to get help I can afford.

I didn't really feel like getting evaluated and diagnosed would change anything... but I was wrong. I view everything through a different lens. I examine my choices throughout life differently and I've been reflecting on that a lot. Would I have gone to college? Would I have had children? Would I have ended up getting my driver's license? I know these "what if" questions aren't helpful for helping me plan for my future, but it's given me a deeper insight into who I am, and that's valuable in its own right.

I have succeeded in a lot of ways and I continue to do so, but sometimes it feels like it's been at a high personal cost. I've always had depression, anxiety, panic attacks, and an unnerving sense of dissatisfaction and discomfort that never goes away, it follows me around like smoke from a far-off fire. A lot of the things I've done have been out of survival and need, and every day things and life events have always been difficult for me (something as simple as calling someone, or figuring out how to navigate dating without being taken advantage of, or following simple directions). I don't really enjoy life for the sake of it for the most part. I think that's been the most difficult thing for me - knowing that this lack of general enjoyment and interest in life is from a neurological disorder that I can't "fix" and not because I have a lack of serotonin or some other neurotransmitter that an SSRI can repair.

I've never been sure of my path in life, and I'm still not. I feel like I've been wandering aimlessly for my whole life, hoping to stumble onto something that will make me feel like "this is it. This is what I'm doing with my life." I've switched careers a few times so far, I've never stayed at a job for longer than less than a year. And this indecisiveness and flightiness apply to almost everything in my life, nothing has ever been stable and I just jump around from thing to thing. My relationships are challenging, frustrating, I have low patience, I'm very critical, and I'm easily agitated/angry in my romantic relationships, including my marriage (and with my ex-fiance).

I've always wished I could be more "normal."

So... although it did give me answers (which is something I always crave and need), it won't change the things about me that make life difficult. I'm almost 30. I'm set in my ways. My brain is done "growing" and has more of a difficult time making neural connections. Thinking about that sucks.

I've never felt like anyone really understood me, so I'm glad I found this community. I guess I'm just kind of in the "now what" stage. I was only recently evaluated and diagnosed in the last two months.

A diagnosis often brings a revaluation of one’s life, looking at key decisions made in a new light. You have likely been living your life under assumptions that were at best only partially true and often wrong. You have been living with these assumptions for almost 30 years so you should expect the process of figuring out who you are and “now what” to take time, often a frustratingly long time.

You need to let your autistic brain figure out how to deal with this new information in its own way at its own pace, not what the NT world expects or more importantly not expectations based the incorrect assumptions you internalized. The famous or infamous autistic resistance to change makes this process often slow and challenging BUT resistance to change does not equal inability to change.

It brought me more understanding of why my brain does what it does.

Peace, because I know it's not only because I'm a horrible person (partly true) but also because my brain does weird stuff.

Coping mechanisms, to avoid sensory overload, long the cause of much trouble for me. (example, filter glasses.)

Adventure--because I always look for that, anywhere. Why not?

Better family relationships, because now my family doesn't keep trying to force me into the NT box.

Closure with myself as I no longer try justifying everything.

I was three years old.

It bought me time in Special Ed.....

The research for my assessment gave me the missing manual pages, and the assessment left me feeling relieved I had not gone off on a crazy delusion about being on the spectrum, and pride in the things I have achieved and managing to wing it good enough to the age of 54.

I was diagnosed when I was still in elementary school, but neither I nor my parents really understood what it meant until years later. I think it got me an IEP in school, but I didn't know about it until later so never took advantage of the extra assistance I could have gotten. What really helped me is my parents and I actually understanding what it meant and learning how to address some of the challenges I face. That taught me a lot about myself and helped me learn ways to help myself and improve my functioning, to an extent. Before understanding, my dad would shout at me on a regular basis about how I was just not trying hard enough and clearly didn't care about things when I was actually trying my hardest - he didn't see how hard I tried, he just saw that I'd failed. Now he usually actually listens and tries to understand when I try to explain the difficulties I face. So I'd say it's probably not diagnosis itself that's helped me, but myself and others understanding it - although I suspect that if I didn't have an official diagnosis, my dad would not have started trying to understand and if I'd said anything about it, would just have accused me of trying to make excuses, and I know I would have had a harder time not believing him when he was basically telling me that my best wasn't good enough.

Pros:

It kept me out of a behavior class

It gave me work modifications

I think it kept me from being punished for behaviors I was doing due to anxiety

I think it kept me from being punished for pacing

It gave me an aide

Disability benefits

Employment at my current job

Better self esteem


Cons:

It gave me confusion and made me feel pathologized regarding my quirks.

Wondering if anything about myself was due to me being bullied and mistakes my mom made than due to autism.

Teachers in high school tried to hold me back career and class choices wise.

Wondering how much of it was the truth or just BS what my school counselor told me about my diagnoses

Wondering how much was the truth or just an ASSumption on my therapist's part because of the diagnoses

If what my mom says is true (look at my sig) I still believe I have a condition that is not diagnosed because it has not been discovered yet because it is so rare so I got diagnosed with AS. If it wasn't autism, what else could it be? It's not like I had a sheltered life or was kept away from everyone. I was always around other kids and adults so what's my excuse?

My diagnosis was only in the last couple of months and therapy only started last week.

The diagnosis was uninteresting to me because I've felt a close similarity to autistic traits since I was a pretty young kid (10 or maybe younger) and I'm 43 now. It was just a confirmation of what I felt had a large degree of truth for most of my life but that the science had been behind on how to diagnose and also how to approach.

I only started therapy last week and that was a much more impactful experience than I imagined it would be. A journey of reevaluating the formulas I've installed in my brain in order to function in society has the potential to be heavy. A was a vibrant human being at age 13 and younger, but it was then I decided to work harder to fit in instead of just being myself (inspired by moving/changing schools) and it's daunting to realize how many unnatural rules I applied to my life in order to meet everyone else's model of success.

So the diagnosis brought me to a very experienced specialist who only deals in ASD. As someone who's been able to fake it for my whole life and with some talents that make onlookers see me as having "all the gifts in the world," it was the first time I met with someone who offered actual sympathy for my challenges and that was a real mind opening experience that I didn't expect.

We'll see what it all brings as therapy continues.

Not sure what theropy is. Is it similar to counselling?

Probably?

Therapy? I think that is one of those misunderstandings. Is it a disease? Do you need to do therapy?
I think you may need to do adaptations to facilitate things.

Diagnosis brought me some acceptance, understanding, direction on what to watch out for. If you struggle in life and financially there could be benefits, but you also need to be aware of possible labeling and negative consequences of a diagnosis.

I think the diagnosis helped primarily myself. Each situation is different and you need to weigh pros and cons.