Getting a diagnosis

Hello. I am new here and would love to hear from others who may be going through a similar process of trying to get a diagnosis for ASD or Asperger's in adulthood. I am in my 40s and believe I am on the spectrum. I have struggled with social anxiety, OCD, and sensory problems since childhood and been very isolated since graduating from college. I have no real meaningful friendships and romantic relationships impossible as I don't like invasion into my personal space and am uncomfortable with displays of affection. I find it hard to talk in social scenes and bright or flashing lights are a real problem for me. So is noise. I am unable to work due to the problems. 

I finally plucked up the courage to go to my GP with my suspicion I have ASD, in the hope a diagnosis would help me to get support to live independently (I live with parents), but am struggling to get a referral. I have taken tests online, all of which came back positive for ASD, but I failed one of the two tests given to me at the GP surgery by just a few points, so on that basis am told I may not get a referral but it hasn't been ruled out. I am concerned I will get a diagnosis of general anxiety or social phobia which won't be as helpful to me in the long term, and my lights issue isn't a phobia but genuinely problem as they hurt my eyes and seems to bounce everywhere. .

I am very disappointed as not all the questions were easy to answer and still believe I am on the spectrum. I also didn't test positive for OCD, as not distressed enough by symptoms apparently, so getting no real help for that either. Also I am worried that if I don't get the diagnosis then people won't accept I have mental challenges and I'll be expected to recover with some phobia therapy when I don't think realistically I can do more than manage my condition.

Anyone else finding it hard to be taken seriously? I know NHS is under pressure, and referrals cost money, which makes me feel guilty, but I do believe I have ASD, just perhaps not ticking all the right boxes on the forms. I am not unempathetic. I have too much, if anything, and have to shut things out on tv, for example, as they are too much to process.

Thank you for reading.

Parents
  • Hello and welcome to the forum!

    I was diagnosed with ‘Autism Spectrum Disorder F84.5 according to the ICD-10’ at the end of last year at the age of 37. I have had several episodes of depression, OCD, Trichotillomania (compulsive hair pulling which I now understand to be a stim) since childhood and social anxiety when I was younger for periods of time. 

    I struggled to get my GP to take me seriously but I stood my ground! It helped my cause that I also had the opinions of 3 healthcare or education professionals which I used to strengthen my case for requiring referral. 

    I would suggest writing a list of examples of how your suspected ASD symptoms affect you now and have affected you throughout your life. It would also help your case to have written accounts from close friends and especially family on the same. It’s just a case of presenting the GP with enough evidence that they can’t refuse to refer you.

    Hope this helps and good luck!

Reply
  • Hello and welcome to the forum!

    I was diagnosed with ‘Autism Spectrum Disorder F84.5 according to the ICD-10’ at the end of last year at the age of 37. I have had several episodes of depression, OCD, Trichotillomania (compulsive hair pulling which I now understand to be a stim) since childhood and social anxiety when I was younger for periods of time. 

    I struggled to get my GP to take me seriously but I stood my ground! It helped my cause that I also had the opinions of 3 healthcare or education professionals which I used to strengthen my case for requiring referral. 

    I would suggest writing a list of examples of how your suspected ASD symptoms affect you now and have affected you throughout your life. It would also help your case to have written accounts from close friends and especially family on the same. It’s just a case of presenting the GP with enough evidence that they can’t refuse to refer you.

    Hope this helps and good luck!

Children
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