ASD assessment, AIBU to ask for second opinion? Can I do this?

[DoubtingDoris]

After a long wait for my local NHS service, I've just been through assessment for ASD as a woman in my 30's. The questions seemed more aimed at what I'd consider traditional ideas of autism, not the stuff about women with types of 'high functioning' ASD.

I had to look at a child's book and make up a story. The assessor called my parents and asked if I'd been preoccupied with wheels or spinning objects, and could I follow rules in conversation. He didn't seem that interested in my sensory issues. He maintains that my executive function problems and social issues are learned responses to my behaviour from possible ADHD, rather than ASD, causing my considerable anxiety problems. I possibly have inattentive type ADHD, but still think I was seen as 'weird' at school for more ASD reasons than ADHD. I didn't interrupt people, and was quite quiet but was generally odd and out of step. By secondary school I learned to mask by watching others, and joined a drama group to study how to act like a normal teenager. Got good results academically etc.

Anyway, the assessor says there's overlap between ASD and ADHD and I have traits of ASD but not enough for a diagnosis as far as he's concerned.

Can I get a second opinion? I'm really not happy as I don't think the full picture was being assessed.

Doris - its working for me - here is the link to the on line community

community.autism.org.uk

Thank you very much

Aughrim - yes, I think everyone actually understands the terminologies.
I was pointing out that the people I know in their 50’s onwards who, if diagnosed today, would be diagnosed as ASD. However, if they had of been diagnosed previously they would have been aspies. We can all pretend it’s the same due to the ‘spectrum model’ but it’s not. I know people who have what used to be called high functioning autism (as distinct from Aspergers when it was still an option), now politically incorrect of course, it’s levels instead. They are completely different to aspies. Not all high functioning would have been assigned as Aspergers yet know everyone has ASD due to not so common commonalities.

Not sure how embedded you are in the medical community but the majority of people I know who have been to school with aspies, been to uni with aspies, trained and worked with aspies and have treated both aspies and those with autism under the old DSM pretty much refuse to believe it’s the same thing. Of course when we graduated Aspergers didn’t even exist as a diagnosis so people our age and younger to a point were never diagnosed. They were just people who were ‘odd’ who you went to school/uni/worked with. As a colleague said, we’ve all trained and worked with people with Aspergers, no-ones ever trained and worked with someone with Autism. A lot of people would consider that those who pushed for the current definitions introduced in the DSMV are wrong and while it must be begrudgingly accepted as terms on paper it now makes that paper meaningless.

One of my kids is an aspie, diagnosed over a decade ago. They don’t identify as having autism. They don’t identify as having ASD. They are friends with a lot of other aspies (all diagnosed prior to V). None of them identify as having autism either but all readily claim Aspergers. We also personally know a few people with kids diagnosed with autism prior to V. In comparison the aspies think it plain common sense that they are different (not better, not worse, just different) and want to be acknowledged as such and addressed as such and good luck arguing the toss with them.

That's really interesting that there is a lot of disagreement about the inclusion of Asperger's. It was originally that which I felt sounded most like me. Then I read that they don't diagnose it anymore, it's all under the banner of autism.

What are the types of differences between Asperger's and HFA, in the previous way of thinking about them? I never knew some people consider them to be completely different things!

God, I always forget how irritating the word aspies is until I'm on mumsnet and read it again 😂 so twee and infantilising!

Is Asperger's still diagnosed in other parts of the world, like the USA?

Hi Popping
My aim is not to argue to the toss with anyone - although it did become that.
I wanted to give clear sympathetic advice to the OP how she could get a professional second opinion, professional support and help and help from other people who have gone through the process themselves.

I am very aware of the different points of view within the world of autism.

Some families I work with children with very very complex difficulties, non verbal, sensory overload, minimum self care skills, wearing pads etc argue very very strongly it is a medical disability. On the other side of coin, I know that some people [ not all] argue very very strongly that their autism/ Asperger's syndrome is not a medical condition but natural variation which the whole world is richer for. Other people with Asperger's who I personally know belief it is a medical condition that has blighted their life. I don't feel this is the forum or indeed my place on her to take sides.

As I said early I simply wished to sign post the OP to the best professional advice and support groups

Forgive my typos

Speaking as someone with some experience assessing for autism - it sounds like he did the ADOS with you, and the ADI interview with your parents? The Q to them about spinning objects would have been one of many Qs he would have got them to answer about your childhood if so. The ADOS and ADI are gold standard assessments in autism assessment (see the nice guidelines) so I wouldn't say he is out of date at all. Assessing females does require more knowledge about how they present differently to males, but given he is working in an autism specialist team I would think he is aware of that.

Re an earlier comment about private assessments being somehow better than NHS ones - I disagree. Actually many of the private assessors will be working in the NHS alongside their private work anyway.

You are entitled to ask for a second opinion, and I'm sure they would allocate another clinician to have a look at the assessments and interpretation. It wouldn't be the same man who assessed you.

Asperger's can still be diagnosed here.

It comes down to which manual the diagnostician uses.

In the ICD-10 (more commonly used in Europe) Asperger's is still distinct from Autism. The main difference is whether there is a clinically significant speech delay. Speech delay = autism, no speech delay = Asperger's.

In the DSM-5 (more currently used in US) there is only ASD (autism spectrum disorder), and they used level descriptions to describe how much support a person needs in their daily life.

As far as I know, HF/LF has never been officially in the diagnostic manuals as categories, and they were originally used simply to describe IQ. So HFA = person with speech delay as a child but average or higher IQ. Asperger's = person without speech delay.