Published on 12, July, 2020
I posted recently about my first assessment experience. Today they confirmed that in their team's opinion, I only meet 2 of the 3 DSM criteria and therefore do not merit a diagnosis.
Their reasoning boiled down to the fact that I've learned to consciously think about and understand social interaction, and because they only had time to ask about a handful of my relationship experiences (across almost 30 years) they've decided that, because I can understand my parents fairly well after living with them for years, I display no issues with understanding communication.
One of the team did say to me, and I quote, that 'it is just not possible for a person with autism to learn to communicate very well or think about other's feelings'. In the activity where you watch videos of two actors and are asked why the people are saying/doing what they are, I prefaced each answer with 'I don't know because I'm not them', before suggesting several possibilities which I had to think about first.These answers were based on logic and my own past experiences, not intuitive. They said because I could think about why people might say certain things and guess the correct answer (amid a handful of other answers) I don't display issues with understanding communication.
I asked if they had considered any of the other relationships or experiences which they hadn't asked me about, they said they had all the information they needed (based on one appointment, a telephone interview with my mother and a few letters from me about some of my history but not all). They seemed overall very annoyed that I had given them so much extra written information (which was cut down when I sent it, because I assumed as specialists they would't need too much extra info). They suggested I go back to my GP and try more counselling and CBT, of which I've had courses of over six times since adulthood.
They said my Sensory Processing Disorder (diagnosed in childhood) was an entirely seperate condition and not related to autism. They said my need for routines and my highly focused interests were essentially personality traits, and not necessarily related to autism.
One of the team said, and I quote, 'there is no workplace/jobfinding support for anyone with autism just because they have a diagnosis'. She also said this was the case for therapy and other services. I asked if she meant locally, and if she was considering whether individual charities/employers would provide help (which I have seen evidence they do), but she just repeated her statement. They did not discuss the fact that I've been unable to work for almost 5 years because of increasingly debilitating social anxiety, or the constant issues I experienced with communication/bullying when I was in work.
My mother and my advocate were both present for this appointment and they said afterwards they got the impression that this team did not know anything about autism at all, or at least had only experience of very low-functioning individuals (the team said I was of almost genius-level intelligence, so I don't know if they can even understand a lot of what I'd written). My mother and I verbally confirmed we would be seeking a second opinion, and they said I would have to get it from my GP as they do not seek opinions from other teams (though NICE guidelines recommend they do so). My mother was crying during this time because she felt what they were saying was so incorrect.
Overall, I want to know if this experience seems as unprofessional as I feel it was? Does this sound like a proper assessment process?
I will be waiting for the report, and then going to my GP and possibly contacting NAS for assistance. But I feel even with a different team of 'specialists', they may be just as unequipped to diagnose properly as this one was, especially on the overstretched NHS.
Any advice appreciated.
There's a place called Spectrum North West which I have seen mentioned on this forum. I'm thinking of going in the new year for an initial assessment.
In my opinion there is no clear-cut line between "normal" and people on the spectrum and it is very hard for them to diagnose and different teams will have different opinions. In my case I was put off getting an NHS diagnosis by my GP and advised to go privately until my lawyer pursued this and managed to push for it. My diagnosis came from a court case where I had offended someone online via messages and autism was thought to be relevant to my understanding of social interactions online and used for the defence. Before my diagnosis I looked up what the traits were and exagurated them A LOT as I was terrified of this court case and needed all the help I could get. Although I wouldn't say I completely faked it I am still on the fence as to whether I am actually on the spectrum or not, but in my opinion there is no solid line of being on it or not as I have seen all different traits in different people as everyone is unique
No I disagree with you on Unite being brilliant they were beyond Sh!t for me,
I still suffer with migraines and my anxiety has become unbearable, because of how I was treated in the workplace and my branch manager was a focking rep, So no not at all are Unite Brilliant after the amount of times I called asking for help and being brushed off not a chance.
Thank heavens I found this chat group. Thank you all for your input. I’ve been telling the mental health team that I know that something is different in my thought process. Shared my quirks. I don’t understand people, life, I know I think differently. I was worried I had addictive personality. Guess what, no one came forward. I work in primary care and worry about referral, lack of professional understanding ( or shall I say lack professionals / professionalism) and potential for rebuff. I’m 47. I’m ashamed to admit that I knew nothing of Aspergers until someone suggested that my daughter shows traits. Bingo, now I know what my brain is up to and likely hers too. I would like formal diagnosis. Thought it would likely be private assessment. Glad I know the costs to. If anyone can recommend psychologist for North Wales/ North West England, I’d be very appreciative.
And possibly more?? My initial diagnosis was with a Psychiatrist and Autism wasn't even considered by me. I simply asked my GP for a private referral because my stress & anxiety was getting worse as I got older and drugs were only helping to a point. I almost fell off my chair when the Psychiatrist said he was 95% certain that I had Aspergers and was happy two formally diagnose me there and then. BUT he said that "institutions" require a formal Autism assessment and therefore, referred me to the Hants & Surrey Psychology. Now my Psychiatrist cost (just under two hour hours consultation plus reviewing 8 pages of my life experience notes) was £300.
I then had an initial consultation with a H&S Psychologist, to determine whether it was worthwhile having a full assessment - this was another 1hr45 (plus my notes review and review of the normal Autism and Empathy questionnaires) - £247.T
Then the assessment itself, with an observational part with a different Psychologist, total cost £1500.
So not cheap, but at least the initial Psychiatrist appointment was definitely worth the £300, because I got an answer to my issues and for many people that might be enough. Because I had work issues, I was happy to pay whatever was needed to get a second opinion.
Has it changed my life... No because I have so many coping mechanisms ans on continued medication. But at least my work have to take things seriously now. LUCKILY, I am in Unite and we have brilliant Rep's, fully conversant with the Equility Act 2010, which includes disability like Autism. :)
I agree it sounds like a private appointment with a suitable autism specialist is all you can do that will help, but will cost ??£200
All the *** I've had to go through to get help and all the other stuff that comes along with it being diagnosed was the easiest part it was straight forward I had been forced to go ha, and everyone was saying there is something wrong with you I'm sure you have autism and at first I was hesitant I was telling people to bugger off but then I thought okay this might explain why everyone hates me so let's check it out and sure enough I have autism they sat me down and scribbled down every part of my life as dictated by me and then asked my parents and partner about me, (interesting read) and got me diagnoses. (pirate impression)
Exactly the same as myself - NHS said not on the spectrum but a private assessment by someone recognised by the local NHS = Formal diagnosis. Now finally given that diagnosis to the denying NHS three months after contacting their email address about it.
Because the process is not written down, new to anyone looking for/receiving a diagnosis then the system is lacking.
I think your only alternative is a Private assessment? In my case i have "No theory if Mind. Apparently. When my wife gets upset abd crys i just have to walk away as I don't know what Iam supposed to do :(