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Advice needed on draft diagnostic report

Sunflower
over 5 years ago

Hi everyone,

I finally received my draft diagnostic report last night. I had intended to share part of it with my employer, but having read it I do not feel comfortable about this. There is relatively little in the report relating to employment and it is so deficit focused that I am concerned about the impact it would have. 

I've been given an opportunity to correct inaccuracies before the report is finalised and I'm considering whether to ask for more significant amendments: 

  • Greater specificity about the assessment process and diagnosis (DSM or ICD? diagnostic code?)
  • What ASD is, how women may present differently, and the impact of very late diagnosis 
  • Information on autism at work - including particular challenges discussed in assessment  
  • Austistic strengths at work - in general and with reference to my skills and career history 
  • Employment recommendations (only one in the report but I was emailed more previously)  

I would be happy to draft the additional material myself and ask for it to be added to the report. Perhaps this would be seen as inappropriate though? 

Just wondering how you felt when you received your diagnostic report - were autistic strengths highlighted as well as deficits? If you were working did you share all or part of the report with your employer? 

I've been waiting a very long time to receive the diagnostic report so I was a bit surprised by its brevity and lack of specificity. I have not seen any other reports so maybe mine is typical. It is a rough draft (typos, missing words) which Is difficult for me too. I would be upset if the final version included mistakes but if I correct the grammar and spelling I might cause offence. 

I would appreciate any advice anyone can offer. I expected to have some negative feelings about my report given the assessment process is based on the medical model. However, I thought it would contain more information relating to employment as this was the main problem when I referred myself - we also spent much of my assessment discussing it. 

Thank you! 

Parents
  • over 5 years ago

    Hi Sunflower its great to hear from you, I hope you are OK

    I'm still waiting for my report. I was told it would take 2-4 weeks. Its been over 7 and still no sign. I started chasing it a few days ago, They don't seem to answer the phone, Ive left a couple of messages on the answer machine but no one has got back to me yet. I seem to have spent the last 6 months chasing various NHS departments and waiting around for calls that never materialise. It has had its toll on me and has made my anxiety issues a whole lot worse.

    I got a letter stating that I had Aspergers/high functioning autism and I gave a copy to my employer. My employer has then been able to liase with Occupational Health regarding adjustments

    When my full report turns up I wont to giving my employer a copy, I intend to keep it private. I don't see any benefit in sharing it with anyone without a high level of expertise in this field, they just wont understand

    James

  • over 5 years ago in reply to PINARELLO F8

    Hi there, good to hear from you too James,

    I am feeling a lot better about my report now. It arrived at a difficult moment and reading it was probably always going to be a bit tricky. I have been reminding myself of all the amazing things I have experienced in my life as a result of being autistic. 

    Sorry to hear you are still waiting for your report to arrive. Seven weeks is a long time to wait. The long delay made me think there must be a lot to it, but there isn't really. Funnily enough one of the autistic traits pointed out to me was difficulty getting started on a task. People doing ASD assessments clearly have a problem with this too! 

    I noticed one of the clinics I looked up for my son promises to deliver the report within two weeks of the assessment - I can see why they make a big point of saying that now. Hope yours comes soon. You are quite right, our reports are very likely to be misinterpreted by people who do not understand autism. I shall only be sharing carefully selected information. 

    To be honest I am quite inclined to abandon the idea of trying to get any changes made where I currently work. It's two years since I started so it's the point at which I typically get fed up and leave. I am more inclined to branch out in a new direction. A fresh start is really appealing as I can get things put in place from the start. The service I work for is bound to be cut back further in the next round of austerity - job security is an illusion these days. 

    You are right about all the phoning around increasing anxiety - I had to take Propanalol this morning before speaking to the Union rep. Nothing is properly joined up - everyone seems confused about what is going on. The xmas break has made things much worse. If autistic people were in charge I am sure everything would run a lot more smoothly! 

    Take care,

    Best wishes.

Reply
  • over 5 years ago in reply to PINARELLO F8

    Hi there, good to hear from you too James,

    I am feeling a lot better about my report now. It arrived at a difficult moment and reading it was probably always going to be a bit tricky. I have been reminding myself of all the amazing things I have experienced in my life as a result of being autistic. 

    Sorry to hear you are still waiting for your report to arrive. Seven weeks is a long time to wait. The long delay made me think there must be a lot to it, but there isn't really. Funnily enough one of the autistic traits pointed out to me was difficulty getting started on a task. People doing ASD assessments clearly have a problem with this too! 

    I noticed one of the clinics I looked up for my son promises to deliver the report within two weeks of the assessment - I can see why they make a big point of saying that now. Hope yours comes soon. You are quite right, our reports are very likely to be misinterpreted by people who do not understand autism. I shall only be sharing carefully selected information. 

    To be honest I am quite inclined to abandon the idea of trying to get any changes made where I currently work. It's two years since I started so it's the point at which I typically get fed up and leave. I am more inclined to branch out in a new direction. A fresh start is really appealing as I can get things put in place from the start. The service I work for is bound to be cut back further in the next round of austerity - job security is an illusion these days. 

    You are right about all the phoning around increasing anxiety - I had to take Propanalol this morning before speaking to the Union rep. Nothing is properly joined up - everyone seems confused about what is going on. The xmas break has made things much worse. If autistic people were in charge I am sure everything would run a lot more smoothly! 

    Take care,

    Best wishes.

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