Should I get a second opinion?

Hi, 

I've already posted here recently but it was before I had my feedback interview so I have sort of an update on my situation. 

I recently received a result saying I didn't meet the criteria what I was initially understanding of. Today I asked this assessor who did my ADOS test why he thinks I scored low points. He said that because I could look at him for even a second when he was talking to me that anyone who is autistic wouldn't even acknowledge him. He also said that a sign was that he told me a joke and I laughed and that anyone who is autistic does not show any facial expressions. I told him that my special interest was video games at this assessment as I not only spend basically all my time playing games to the point I neglect important things, when I'm not playing games I'm watching video analysis of game design and looking up videogame trivia, he said that videogames aren't a special interest and they're just something that people get addicted to. He also said that if I was autistic my behaviour wouldn't change regardless of my surroundings so I would behave around my parents the exact same way I would around complete strangers who are making me anxious. 

At this point I sort of just felt like this assessment wasn't at all based on any kind of any ASD spectrum and just came down to that if you didn't show the stereotypical traits of someone who is low functioning then you're not autistic at all.

I know these are professionals and I'm not but I just personally feel like this particular assessor was basically using no intuition and just basing his decision off stringent guidelines made to only diagnose people who can't even function in everyday life.

I was just wondering what everyones thoughts on this were and if I should seek some kind of private diagnosis as I asked this assessor for an appeal and he said he wouldn't know who to go to and I'll have to return to my GP and start this whole 3 year process again.

Thank you if you read this. 

  • Where eye contact is concerned, masking can appear to override the legend of the no-eye-contact in ASC sufferers, the crack in the mask usually appears when you break eye-contact once you get into the flow of a rant/speech/answer. This crack is usually present, as the average NT will not notice it, and therefore you will not have needed to develop the camouflage further. 

    Part of mask can usually be making a facial contortion, that seems to sate the social requirement of an NT situation, such as laughing when a professional is fishing for a laugh for some reason. Autistic individuals systemise and find patterns in social interactions, the more social interaction you are exposed to, the more efficient your system.

    Autistic individuals are not defective, they are different, like an anthropologist on Mars would be different to Martians.  
    You may have found that you sated him, more than he sated you when it was your turn to speak about your interest, so I thing he was a bad study of you.  

    A lot of these guys are trained to find traits of mood and stress disorders in clients; or they are trained to find autistic traits in infants and not mature and life-experienced adults; or they (as you say) have prescribed notions of what autism looks like.

    Ultimately autism is a neurological condition, that can have psychological comorbidities, and ASC diagnoses have been uncommon in the past. There is a-lot of battling with psychologist that goes on for this reason.

    If require a diagnosis to satisfy yourself: You need to secure a timeline of your neurological differences from birth (ruling out childhood regression), you need to read up on ASC’s a little more to know the signs, and you need to find another specialist because you think he was in error.

    We are here if you need us, these issues are more common than you think, but awareness is getting better.

  • Just received a positive diagnosis after getting a second opinion. I went private with a woman who had 25+ years of experience diagnosing ASD and training over 300 people for the NHS. She was immediately more understanding than my previous assessor and actually made me experiences feel validated. She said it was immediately apparent I was on the spectrum and pointed out all the things she'd observed to make her believe that. 

  • Sounds very poor. The history given by an adult should carry great weight in any clinical diagnosis. They seem to be carrying over procedures aimed at children unaltered, with little or no acknowledgement of the far greater input that adults can provide as to their own traits and experiences.

  • I see, I wasn't sure what the usual process was. The two people I spoke to in my feedback session who were on the team said that my development history isn't taken into account and is only used to see if my case should be continued further and that the only diagnostic tool they use to make their decision is the ADOS and that's it. 

  • It sounds like this assessor should be struck off honestly it's been officially recognised as a spectrum for a decade and nobody should be lagging 10 years behind in their professional field when every device a fingers touch away can tell you that with a google search.
    Yes absolutely seek a second opinion.
    And launch a complaint with someone about that ASSessor.

  • Strangely, the NHS takes the most expensive possible approach to autism assessment, often using teams of clinicians with procedures and tests that take a long time to complete. This is despite the official NICE guidelines for adult autism assessment stating that a valid diagnosis requires only the opinion of a single, suitably qualified clinician. It isn't as if assessors are gatekeeping a vast treasure of expensive support available for adult autistics, as support barely exists.

  • Unfortunately, there are some assessment centres who only assess on the basis of how disruptive or 'difficult' a neurodivergent person is from the point of view of society - ie neurotypical society - at large. If an autistic person can cope in society, and is not prone to antisocial behaviour, they do not consider them autistic enough for diagnosis. This ignores the fact that the autistics who can function in society often pay the greatest price in poor mental health and exhaustion.

  • Your assessor is an idiot. There has been a reasonable amount of good quality research into autistic masking; see this, for example: journals.sagepub.com/.../13623613211026754

  • Does anyone know how the ADOS should actually be carried out? The examiner wasn't at my feedback session, only the observer. The observer said I didn't even engage with my examiner at all but counted me talking with him because he asked me about video games which I'd say is it special interest. 

  • Seek a second opinion by what I rained this is absolutely horrendous 

  • I am also angry on your behalf! This is a very outdated view of autism, and I suspect many of the people here would not meet those criteria.

    A few thoughts: it might be worth getting in touch with the charity Mencap and seeing if they have any advice or if they can help you advocate for yourself.

    It also might be worth speaking to your GP, if they were supportive of your referral.

    Before you speak to them, or before you go for a private assessment, make a list of ALL your autistic traits. The longer and more detailed the better. Better yet, if you can find the diagnosis guidelines (or similar) online and go through listing in detail how you meet each one of them. Then make sure you show it to everyone you talk to (Mencap, GP, assessment). I basically did this when I was pursuing a "second opinion" assessment (although my first assessment situation was very different to yours, I still didn't get diagnosed correctly).

  • It wouldn't surprise me, but I have a low opinion of NHS psychiatry these days...

  • I'm happy that you and your daughter got the support you needed in the end.

    I'm definitely just gonna chase a private diagnosis now as I think whatever team they've got in Southwest Yorkshire is just inept. I've just now looked up the guy who signed off on my report and obv is the leader of the group who discusses your verdict and I've seen people saying that 3 different GPs have told them this guy has been reported and I've seen a few stories about him telling people not to take their medication, it's insanity.

  • On the NHS they are stringent, and use outdated criteria. He is also not supposed to say what autistic people do, since we are all different. Whether you look at him or not, it has no bearing how autism affects your life day to day. I won’t bore you with my experiences when getting my daughter assessed, but we both ended up being seen privately for our diagnosis’s. 
    If you need to be diagnosed, do ask your GP for a second opinion and explain why. There’s always the chance that you can be referred elsewhere and not see the same team who didn’t diagnose you. 
    If you go privately, ensure that the person there specialises in autism, and is up to date with everything. Even if it’s a special interest it’s still helpful.

    My private diagnosis was great. It wasn’t the NHS standard, yet meets all NICE guidelines. The sessions were relaxed. Jokes were made. Bad language popped up here and there, and the NHS assessment process was mentioned more than once. Not in a bad way, but more to do with how out of touch it is, and how it’s all about postcode and budget. In the case of my daughter, her NHS report was used, so that the specialist could mark the contradictions and put right everything that was written incorrectly about her.

  • If I were in the same position, I'd try to understand the motive(s) behind such attitudes. These, I think, can range from a kind of vanity on their part, to an understandable anxiety about your future well-being or their own. For example, if their attitudes are - in the wider scheme of things - fundamentally selfless then I'd find it reasonably easy to understand and forgive. Some parents' care is hidden behind seemingly kneejerk bluster; a bluster that obscures what it really is at heart: worry.

  • I think your right, my parents are  the ‘boomer generation’, I would have got the same response if I had come out as gay to them, “there’s no way I’ve given birth to a child like that.” All square pegs will fit into a round hole! We often get accused of liking everything to be the same or routine, it’s NT parents who want all children to be the same,  we fully accept how different we all are.

  • I am sorry about your difficulties, mate.

    I guess people have all sorts of reasons for these denials or dismissals. I get the impression that some of them are trying hard to convince themselves.

  • It is quite common, some parents believe that we are attacking their parenting skills. I’ve tried with my mother but it is just pointless, I was told that autistic people don’t talk and stare at walls. I’ve tried educating and drip feeding. I didn’t have the parental form filled out as I knew it would be from a hostile whiteness. None of my family know I am going through assessment. The only place I talk freely is on here, I don’t still let my wife fully in.

  • It's really great that your parents are on your side, Kyle. Slight smile Sadly, we so often read on here about members' struggles to gain their relatives' support. I realise that I'm biased but I feel that their opinions are rarely honest, as if they're either in denial or are looking for a convenient excuse to disbelieve the person or even to doubt that Autism is a real phenomena.

  • Thanks, I think a private assessment is going to be  more positive and in the long run less stressful. The NHS assessors will close ranks, they will report to their superiors with all well written facts and figures. I’m planning on moving to another county within the next year, probably about 200 miles from where I am now, I would have to start again and have to be referred again and join the bottom of another waiting list. I’ve decided to use some of the money from the house sale and seek a private assessment. It just depends if the NHS appointment happens first. Good luck going forwards.