Little point in going in for an assessment

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When I attended my first diagnostic assessment (at a children's autism clinic paid by Medicaid) in 2014, I was diagnosed with Generalized Anxiety Disorder (GAD) and Obsessive-Compulsive Personality Disorder (OSPD), but definitely not Autism Spectrum Disorder (ASD). I felt crushed. Fast forward 19 months later after I had regained some hope, and I attended my second assessment (at my university's all-ages autism clinic paid by myself) in 2015, I received a diagnosis for ASD and a professional apology from its clinical director for my previous misdiagnosis (even though it wasn't the fault of the university clinic).

The moral of the story is to pursue a desired diagnosis until you get it. Diagnoses aren't bestowed like New Year's Day honours; they come from cooperation between clients and clinicians. Clinics and their clinicians don't often understand the nuances of ASD, especially in adults. Don't give up. Become your own best advocate. Challenge diagnosticians gently, but don't give in.

I felt differently from you about my assessment , I was confident that if I wasn't diagnosed with ASD they would be able to tell me what was wrong. That's all I wanted from an assessment - an answer either way and if I didn't have ASD they could point me in the right direction.




GAD & OCPD were the two things that ticked a lot of boxes for me. I think there is a massive crossover with OCPD.

Having been diagnosed as an adult I agree that generally speaking there is no NHS-based assistance. So if you are seeking that I personally wouldn't bother and work on informed self-help. Having said that if you have a housing/work problem etc and there is as charity service near you it may be helpful to show you are in need.

If you strongly suspect you have ASD or a related condition personally I would question whether a clinical diagnosis is necessary, you know as much as you need to.

I was totally unsure what my problems were, and so in that case going through the process of a formal diagnosis has helped me understand myself better.

Btw, in my experience the capacity for a diagnostic service to differentially diagnose is limited. If you don't have ASD they may not be able to diagnose what it is, you might need a separate referral.

I have also been told there is little to no help after diagnosis, but personally I feel like I’d be able to work things out better as there is a wealth of information out there that explains the condition and why I am the way I am.

Not being diagnosed yet means that I can’t talk to anyone who it might affect in my life because I’d feel like a fraud, especially if I disclosed to some one ‘yeah look I suffer from all these autistic traits...’ and then they turn round and say I’m not autistic.

It would also go a long way to explain why I have such issues talking about feelings and such with my partner and why she feels I’m so absent in our relationship.

This is a good point. I suspect although I have autistic traits I am closer to NVLD. NVLD is scarcely recognised in the UK.
As far I am aware it is not something the NHS deals with. Mention NVLD to most mh professionals and you get met with a "WTF are you talking about ?" expression.

I was told that if there was any doubt in my assessment my case would be passed on to a panel of experts so I was pretty confident and reassured that they would get to the bottom of things.

I went in for the assessment. It did help me with my college courses since I am now able to take advantage of the disability services and with declaring my dogs as emotional support animals. Other than those things, all I got was yep you have mild autism look stuff up on the internet. I kind of laughed on my way out at the term mild, I do understand compared to those so affected by it they can not speak or communicate I am very very mild but the therapist pointed out to my eye contact etc in her reasoning. I guess that and the go check the internet was what really bothered me. I've spent a lifetime trying to figure out what was wrong with me, I forced myself to look people in the eye after reading it was required to be successful in life.

I have physically and mentally beat myself up because I did things that others considered weird, wrong, irritating etc. and I couldn't identify it and couldn't stop. I have hated myself so much that the only reason I'm still breathing was my rule driven brain and a pastor said if someone committed suicide they can't go to heaven.

Finding out that I was autistic was like a weight being lifted I wasn't a freak I just thought differently. Not having any help afterwards, has been frustrating. I get so tired of having to remember not do things, and remember to do things that are "normal", it would be nice to have someone to just talk to who understands and who could help me when things get overwhelming.

If you have money and live in a wealthy area in the USA it is likely that you can privately pay for experts who actually understand autism to help you. While not ideal, it is certainly better than the dark ages when even the wealthy could not get any useful help.