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Should I get a second opinion?

Kyle

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. 

Parents

  • Hi, I’m just so angry how you have been treated. Anxiety does affect a lot of autistic people from birth, it’s because we are born with autism at the same time! I will glance at people when they are talking to me, it’s for their benefit, not mine. How many times has someone said,” look at me when I’m talking to you.” I will laugh if someone makes a joke, sometimes, I have found it funny and laughed, other times I’ve laughed because I see others do it and know it’s expected. I’m very surprised they didn’t expect you to be mute and rock backwards and forwards, did they bring leaches with them? I’m so glad you have the support of your family, you have got to challenge this, it’s not how a team who specialise in autism should be  assessing people. The stress of waiting for 3 years is intolerable, it’s similar to competing at The Olympics, you wait and prepare as much as you can and it then boils down to one day, that on its own causes us to act differently and mask in front of strangers.Your parents have even demonstrated that your behaviour goes back to early developmental years. Please keep us all posted on how this all progresses.  I’ve got an NHS assessment coming up hopefully in the next year, I just dread that I will be treated the same.

  • in reply to Roy

    I wish you luck in your own assessment. I'm just currently waiting for private assessors to get back to me. Me and my parents have just be talking about the rubbish this guy said since yesterday basically.

    Apparently because I could do the ADOS test without havings basically tics where I shout something completely irrelevant to the situation, that's also evidence I'm not autistic. I don't know what's wrong with this service because they said they use the usual guidelines but the things they are saying seem to only apply to autistic people with really high support or just completely outdated. 

  • in reply to Kyle

    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.

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  • in reply to Kyle

    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.

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