diagnosis experience and dissapointment.

Hi thanks for all the comments. On reflection what I am going to do is leave this be for a while. Then next year go for a private test. By then we would have relocated and have the money, at the moment it would just cause too much stress to go through an appeal. I score highly on all tests and the assesor never really talked about my obesessions, my lack of imagination, how I played as a child and friendship issues. It was like she decided I wasn't autistic from the start. She even mentioned I can't be autistic as I don't have strict routines. I have a job that changes by the hour so apart from the routine of getting up in the morning I have no routine, I can't as no day is the same as I am out on the road visiting customers when soemthing breaks. Weekends I just make it up as a go along as that is what weekends are for.

Rob

Sparrow said:

This doesn’t make a lot of sense. You can’t be 80% autistic.

It is consistent with the way autism is diagnosed.

When you take the like of a RAADS test as part of the assessment you get a score based on how many traits you have and how severe they are. When this number crosses a threshold you meet the criteria.

If you are 80% of the score to meet the criteria then you can easily say you are 80% autistic. By their measure you can also be 120% autistic too - it just goes to show that it is an arbitary value that can be easily measured by professionals.

The label of auutistic is often used for disability claim reasons, but it is also valuable to understand the nauture of our minds so we can find ways to cope better with our issues.

This doesn’t make a lot of sense. You can’t be 80% autistic. You either are or aren’t. As other posters have said I question how this diagnosis was made. I can also communicate fluently, don’t hand flap or have a monotonous voice but the team (4 of them) who did my assessment had no doubt I’m an autist. (With ADHD) I’m 59 and had no one except myself to vouch for my childhood. 
I know this isn’t much help in terms of getting a formal diagnosis but please be assured that if you’ve done your homework and have concluded you’re autistic you are autistic. The ADHD diagnosis covers you in terms of disability legislation. 

They seem to not know some stuff they ought to! ADHD can mask some autistic traits and people with both can be more expressive. You may be autistic yet!

So by that definition people Chris Packham probably wouldn’t count either.

The key issue the assessor needs to understand is whether you’re heavily masking or whether you are naturally expressive etc.

Obvs it’s difficult for us to comment on your particular case.

Was it a single assessor? I was told there needed to be agreement between two practitioners so my ADOS assessment was done by one person and everything else by another and they both contributed to my final report and agreed the result.

The key thing said right near the start was that I could talk fluently, I showed hand jestuers that wern't stimming, I didn't have a monotone voice and I guess I looked too 'normal. I showed too much non verbal communication basically. I remember a couple of years ago somebody on here said that they were rejected because of similar things. Yet I see people on Youtube who say they have been diagnosed but are 'normal' in communication.

NAS65321 said:

So I have loads of things I atributed to ASD, what is actually ADHD? Just feels like I have taken some massive steps back.

ADHD and ASD are just different zones on the spectrum - have you tried to self diagnose using the online tests for these? Waiting years for a fallible human to assess you may not be the best way forward if you are relying on it.

There are quite a few out there so I've chosen one from a .ORG site that is non-profit so at least unlikely to want to steal your data:

https://www.mind-diagnostics.org/adhd-test

similarly with autism:

https://www.thevividmind.org/blog/test/autism-test-online/

If your results are quite different to your in person diagnosis then you could be up for doing it again privately if you believe it to be true.

My advice is to try the tests, be brutally honest in the answers and cross check with other sites if you want to improve the chances of a consistent result.

Once you know, self educate and take it from there - take control of the narrative.

That would be what I would do in your situation.

I think I am confused because I waited 4 years for this and looked into ASD so much I was totally convinced. I hardly looked at ADHD. So I have loads of things I atributed to ASD, what is actually ADHD? Just feels like I have taken some massive steps back.

That all sounds very odd to me so I can understand why you’re feeling confused and disappointed.

Did you look into the qualifications of and methodology used by your assessor, because it sounds like they are confused too!

NAS65321 said:

So basically I am 80% autistic

You are however 100% neurodiverse and 100% you. The definitions used to assign the label of autistic are somewhat arbitary as they are largely used to define if you are disabled by it (this is a definition used by the medical community based on how many and how severe the traits are).

Knowing you have a significant number of neurodiverse traits is a great thing as you now know the cause and there is an abundance of literature out there to help you understand more.

You also have this community here to support and offer advice, so you are in a much better place than you were before.

NAS65321 said:

I also fell down that being 54 nobody could validate anything from my childhood.

This won't have had a lot of impact as most late diagnosed adults have few reliable sources of witness to their early childhood.

What are you confused about? Specifics are much easier to help with.