Problems with assessment - Advice needed

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I’ve just got back from my ASD assessment where I was told categorically that “There is absolutely NO WAY you can have Asperger’s” because:

1. I do not have the one special interest that I obsess over.
2. I do not recall having any significant delay in learning to walk and talk.

Now forgive me if I’m wrong but since when do you need just one special interest to be classed as AS? I do get very obsessive over random things, although these are always temporary and pass within a few weeks to be replaced by something usually unconnected. I explained this to the doctor but he seemed to think it was unimportant, although according the UK’s National Autistic Society…

“People with Asperger syndrome may develop an intense, sometimes obsessive, interest in a hobby or collecting. Sometimes these interests are lifelong; in other cases, one interest is replaced by an unconnected interest.”

The second reason seemed even more bizarre, because it was always my understanding that the main difference between Asperger’s and High Functioning Autism is that with AS there isn’t supposed to be a delay with this part of a person’s development. Again from the NAS…

“The main difference between the two is thought to be in language development: people with Asperger syndrome, typically, will not have had delayed language development when younger.”

Although he acknowledged I had significant social difficulties, there were three things in particular he was looking for in order to give a diagnosis and I didn’t fulfill those other two. Now it seems obvious to me that the doctor doesn’t have a clue what he is talking about and his entire diagnostic criteria is based on inaccurate information. Living my life by routines, taking things literally and physical clumsiness were deemed unimportant. He didn’t even bother to ask about sensory issues.

He said that because I didn’t fulfill those other supposedly key criteria I couldn’t have AS, nor did he think I had anything else. His conclusion was that my problems were a result of my personality and nothing more. Now I know this isn’t the case but I’m at a loss regarding what to do next. I could accept being told I had no ASD, but not under these circumstances.

I could go back to my GP and ask to be referred somewhere else, although I’ve got no guarantee the next person will be any more knowledgeable. Also, I’m not sure I could put myself through another 3 months of emotional turmoil while I wait to be seen. Although I don’t want to quit now after such an unsatisfactory conclusion, I’m not sure I’ve got the resolve to carry on.

What I really need is some advice from people who’ve experienced similar and how they coped with it because I'm feeling pretty low right now.

Just because you don't have any special interests, doesn't mean you don't have AS. Also, how are you supposed to recall if you learned to walk or talk, late. That's too far back for most people to remember, AS or NT. That's crazy.

You're right. The diagnostician is incompetent.
As you say, having no delay in language acquisition is actually one of the criteria for a positive AS diagnosis. My "special interests" aren't the classic total obsession with one thing, but I was diagnosed positive. Being a creature of routine is definitely one of the diagnostic criteria and the diagnostician was irresponsible to ignore it.

There was somebody on WP called Greentea who had a similar experience to you. She went for a second diagnosis and that came out positive. So there's hope.

If you can afford it, you might be better going private. That way, you can select your own diagnostician. I would advise that you do a Web search of some names from the NAS list, and pick one who clearly has a strong interest in Aspergers Syndrome. I suspect that some diagnosticians know very little about the condition and are just guessing.

Hi there
I had almost the same experience as you described. after doing much research, there are only a handful of medical experts in the field of ASD (and espcially Asperger). I was so tired of getting no where with the NHS that I finally went private. And voila, after a 4-5 hr assessment, the lovely consultant psychiatrist confirmed that i have Asperger as well as ADHD. Here is a list of the experts in the south east (http://www.autismlondon.org.uk/pdf-file ... eb_000.pdf)

I should have gone the private route long ago, the NHS wasted a few years of my time. best of luck to you and let me know if you want more info.

There is the option of making an official NHS complaint. Ask your GP for advice on this or drop into your local Patient Advice and Liaison Service (PALS), which is very helpful; you can find your local branch here.

Will they send you a report? This can be included in a complaint if it is incompetent. Cite official sources to support any complaint made.

If anything, I think the routine is most important.
Because very little normal people want to follow a routine.

Thanks for the responses everyone.

re CockneyRebel: I have no idea how I was supposed to know that. I my opinion it seemed like he had nothing more than a list of stock questions he needed to ask and how many I got 'correct' would determine the result of the assessment. It sounds like the sort of question that would be asked to a parent at a child's diagnosis that somehow found its way into my adult assessment and was allowed to skew the result.

re ToughDiamond & ASgirl: I'll definitely consider the private route, at the moment money isn't a problem and by the sound of it, it looks like the only way. I'll check the NAS list and try to find someone local. If I wanted to go private would I need to get another referral from the GP?

re Outlier: The diagnostician said he would send a report to the GP but didn't say if he would send me a copy. He did say that if I wanted to take things further then I would have to book another appointment with my GP to discuss the report, which I will do so I can dispute the things he said.

re ursaminor: Yes I thought the routines would be more significant, I mentioned it couple of times but he never focussed on it or questioned me further. He just seemed to treat it as a throwaway comment.

I'm also considering writing a detailed letter to the GP explaining my concerns with the diagnosis and why I don't feel I got an accurate assessment. I would include details of all my problems and quirks and how they link to the spectrum, explain the nature of the spectrum and why we don't fit neatly into a rigid list of identical symptoms, the relevance of the things he discarded and the results of online tests that point to me being on the spectrum. Basically something that could accompany any future referral so whoever does the next one will have some background into my individual case. Does anyone think this would help?

There are no tow aspies alike. Each of us has our own set of traits. I have a strong special interest and you don't. We're all unique. It's a spectrum, within itself and each of us on WP has our own set of traits.

hi murasame, just sent you a private message with more details.

Trying to shoe-horn yourself into the wrong diagnosis, as the medical practitioners state it is, will not do you any favours. If you have issues that are affecting your quality of life, then it is far better to have a correct diagnosis and a correct basis for dealing with those issues.

a good clinician wouldn't need you to "convince" him/her that you're on the spectrum. They can tell whether you have it during/after the assessment. Only incompetent ones will make you feel like having to prove your point.

I thought the speech delay was characteristic of high-functioning autistics...I'm confused. whoever said you can't remember is right, that would have to be something you would find out from a parent, and that's only if it ever came up in conversation. I know my brother walked late, but I bet you a million dollars he doesn't know that. He's on the spectrum, all you have to do is look at watch him for about 15 minutes and you can tell even though he's undiagnosed. But I bet he doesn't know he walked late. Come to think of it, I know he did but I have no idea if I did. He was 'special' to my mom so I think she noticed more things about him.

Well technically you would have to convince a good one and prove your point if you're infact, wrong. A poor one would be the one that is more likely to give you what you want and/or are trying to put across.

Point of clarification, not related specifically to OP.

You are entitled to access this information under the Data Protection Act.

click me for information about your rights to access your medical information in the UK.

I believe some private diagnosticians will refuse to see clients without the GP's approval, though that might be easier to get than an actual referral for NHS services, which of course cost money. They'll generally make that clear in their blurb on the NAS list. But many of them don't have that proviso. My diagnostician (Heather Moran of Leicestershire) required no such thing, and was happy to keep the whole thing confidential, though she strongly recommended me to give my GP a copy of the diagnostic report. And she also said, before she began the procedure, that if I turned out to be a danger to myself or others, she'd have no choice but to break confidentiality.