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Bad Assessment Experience

NAS80071

I have just come to the end of the NHS autism assessment process and I am incredibly frustrated. I was contacted yesterday to be told that I do not meet the autism criteria. 

For context, I am a young woman in a long term relationship, and the assessor took this is a sign that I can maintain relationships. I only have one friend who I struggle to keep in contact with. 

I felt ill prepared for the assessment, as I was not sent any prior documents preparing me for what we would discuss as they initially promised. It was hard to reach them beforehand as the system they used was not very easy to navigate. 

The assessment itself was very stressful, and I got to point where I struggled to answer the questions she gave me due to her responses feeling quite judgemental. It might have been a normal part of it but she kept saying things like "well all people feel like this" when I talked about some of my difficulties connecting with people in school and my preference of being alone, amongst over things I said. I struggled to give authentic responses to what she asked me. I ended up crying from the stress towards the end. 

My psychotherapist of 2 years, who has a lot of experience and knowledge working with autistic people, strongly suspects that I am autistic and even created a supporting statement for this.

As I said before, on the phone she said that I didn't meet the criteria for a few reasons, one of which stood out to me she mentioned was the maintaining relationships aspect and because of lack of routines (I do have routine, routine soothes me, I just struggled to think of an answer there because I was stressed). 

I feel very frustrating, and like she is going off some stereotypes. I have yet to receive the report but I am waiting to get that before I move forward wih anything else. 

Has anyone else had a similar experience? Is there a way I can redo this or anything I can do different moving forward? I am struggling to cope with life demands, particularly at work, and it feels like I am not going to have access to the support and accomodations I need for a while. 

Thank you in advance

  • Sorry you had to go through that! Seemed to me before austerity or Thatcherism that a lot of NHS doctors and staff can be dismissive in all sorts of ways towards patients. Treating them like hypochondriacs, and so on. Some kind of tough-minded culture, maybe.

    Hopefully, you will find a more helpful avenue to go down at some point. 

  • Assessments can go wrong in either direction. I am very concerned stable relationships were the bar. 

    Manny autistic people find it difficult to have and maintain them, but that's not a criteria  I have small number of really good friendships, many of us do. It's about the difficulty in relating to NT people, not the lack of fortune in finding any kindred spirits.

    You could go for a second opinion here.

  • I would imagine she’s ignorant, or it’s about budget. Harsh, but true. Even if the NHS use the out of date criteria, they still know how differently women present, because it’s all out there. Common sense should prevail, but they stick to the stereotypical nonsense built on a typically presenting young male.

    I have mentioned what my daughters assessment was like hundreds of times. I was outraged, and despite giving them a huge typed up report, and trying to explain our answers, we didn’t feel listened to. Oh yes, she’s at a big school, so she’s anxious. She doesn’t like the noise because there’s lots of children there. She has loads of friends. She knows when someone is sad. She smiles, she’s funny, she had an imagination, she shrugged her shoulders, blah blah blah. 
    We went private a few years later.  Came back with ASD, ADHD and Dyspraxia. I’m still angry about it, and still might complain about the shocking experience.(Lost paperwork, no continuity, wrong name in paperwork, long times between appointments, a stream of staff leaving and being (not) diagnosed by someone who had spoken to my daughter for about half an hour.

    You cannot get a second opinion, becuase it will be evaluated by the same team. So your option would be a private diagnosis, by someone who specialises in females.

  • This is why I won't go for an assessment, I've heard of similar experiences.  I know I'm autistic, a psychologist told me I was several years ago; friends (including 2 autistic friends) and the few work colleagues |'ve told weren't surprised.  This is enough for me.   How many of us have heard responses like the one you heard - "all people feel like this"?   It makes me so angry!   I hope you can leave this horrible experience behind you and find validation about your autism in other ways.  

  • It is a recognised aspect of some autistics, I'm one, that they have a very nebulous grasp of time. For these people, a requirement for routines is inappropriate. I do not like change, and sometimes I find it upsetting, but I do not have hard and fast routines, I don't find them soothing. Quite the opposite, having to do things at set times I find irksome. However, I still got a diagnosis. See: www.sciencedirect.com/.../S0166432819305145

  • That’s sounds like an appallingly outdated and cliched way to assess you, I’m very sorry you went through this when you were at your greatest need of validation. I’ve heard via this forum of a few such instances, and it’s nothing short of a disgrace. One person was told that because they could maintain eye contact they couldn’t possibly be autistic. You’ve been subject to similarly reductive thinking. I know it’s expensive, but a private diagnosis via someone who’s a bit more of the 21st century could be the way to go. Or… just trust your own strong feelings. Personally my lack of self-belief and reliance on external validation  meant that I needed that formal diagnosis, but it doesn’t have to be that way for everyone. 

  • I'm really sorry to hear that. Can you collaborate with your psychotherapist to maybe seek a second opinion?

  • Also like to add that the assessment was just under 2 hours, and the only things she did was ask me loads of questions (think it was the RAADS technique she used? Something along those lines)