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Apparently I cannot possibly have Autism because...

Entropy

Hi everyone!

My partner recently pointed out to me that I show a lot of autistic traits so I've been doing a lot of reading about the signs and symptoms and it really does sound like me. I've read so many stories and forums and it all sounds very familiar and I really feel like I can relate. I actually started to feel a bit better and like I understood myself more. I wasn't just "weird" but there could be an actual diagnosis and lots of other people out there like me! However, I wasn't happy to just self-diagnose so I booked a doctor's appointment to request a referral to a specialist... but according to this person there is no chance that I have Autism. 

Apparently someone with Autism:

- Would not be able to graduate from university

- Would not be able to have a job

- Would have speech delays and not be able to talk like a regular person

- Would not be able to be in a relationship

- Would need to live with parents or require a social worker to cope

Apparently, most of what is on the internet is wrong and I'm just seeing these autistic traits because I read about it...

I don't want to start listing all my traits in this post, whether or not I have ASD is a separate topic. I definitely don't think I explained myself well during the phone call (anxiety, brain fog, confusing questions), but I also feel like he just ignored a lot of what I said. Has anyone else had a similar interaction with their GP? I am a little surprised that a doctor could be so narrow-minded and dismissive.  

I don't know where to go from here. I feel really disheartened. 

Parents

  • 1. All of those 'refutations' are total rubbish

    2. I would suggest changing your GP straight away.

    I would suggest writing a list of your traits and, importantly, how they are affecting your day to day life.

    Do you have an idea of what tangible benefits you might get from a diagnosis?

    There could well be a huge waiting list to get an assessment on the NHS - my self referral cost me £1300.

  • in reply to JJ

    I completely agree. Unfortunately it was a doctor I have never spoken to before, so I could maybe go back and ask to speak with one that I know better. I had written some points down beforehand, but most of what I said got disregarded. Perhaps if I am able to get an in-person appointment in the future I could prepare a better list of traits and how they affect me so that I can give it to them on the day rather than relying on being able to explain myself in the moment? 

    I think for me personally it is more about knowing that there is a reason (maybe not the word I'm looking for?) for my feelings and gaining an understanding of myself? Just thinking that I could be autistic made me feel a bit less pressure to force myself to act like everyone else and that I might be allowed to be the way that I am and not have to make myself feel uncomfortable to fit in with how other people behave. I know that an official diagnosis is not necessary but I think it would help, especially as I am hoping to go back to university and I might be able to access additional support. 

    I am currently being assessed at the local ADHD service and asked them about their autism service. She said that I have to get a referral from my GP but that the waiting list for that is less than for ADHD (I've currently been waiting about 2.5 years for that one!). I can't afford to go private right now so I'll have to keep trying other avenues if I want a diagnosis.

Reply
  • in reply to JJ

    I completely agree. Unfortunately it was a doctor I have never spoken to before, so I could maybe go back and ask to speak with one that I know better. I had written some points down beforehand, but most of what I said got disregarded. Perhaps if I am able to get an in-person appointment in the future I could prepare a better list of traits and how they affect me so that I can give it to them on the day rather than relying on being able to explain myself in the moment? 

    I think for me personally it is more about knowing that there is a reason (maybe not the word I'm looking for?) for my feelings and gaining an understanding of myself? Just thinking that I could be autistic made me feel a bit less pressure to force myself to act like everyone else and that I might be allowed to be the way that I am and not have to make myself feel uncomfortable to fit in with how other people behave. I know that an official diagnosis is not necessary but I think it would help, especially as I am hoping to go back to university and I might be able to access additional support. 

    I am currently being assessed at the local ADHD service and asked them about their autism service. She said that I have to get a referral from my GP but that the waiting list for that is less than for ADHD (I've currently been waiting about 2.5 years for that one!). I can't afford to go private right now so I'll have to keep trying other avenues if I want a diagnosis.

Children
  • in reply to GuybrushThreepwood

    As I found out, you need to get a separate diagnosis for ADHD, if you ask for help for that side of your spectrum.. 

  • in reply to Entropy

    I would definitely make up the better prepared list of traits you mentioned in a format that can easily be emailed or incorporated into a letter to go on your file and get a second opinion. Sounds like the GP you saw has a very outdated view of autism. This is what holds me back from seeking a diagnosis the idea that you can’t be diagnosed if you have any “successes” in life. Good luck to you, shame the ADHD team can’t get involved as it often runs hand in hand with autism

  • in reply to Entropy

    I totally empathise with the concept of 'having a reason that I am different' - I had been extremely unwilling to simply accept that lots of therapies and self-help strategies were never going to work on me; I didn't want to unfixable. It turns out that I am very good at masking and mimicry and didn't have a clue that all my energy was being used up by 'faking being neurotypical'.

    I hope you can get an assessment in the pipeline. While you wait, might I suggest concentrating on the 'Neurobeatitful' concept, strengths and abilities - and what tools you already have to get by in life.

    I strongly disagree with the 'disability/deficiency model' which is what the assessment will focus on, it is really damaging to put all your effort in to what you can't do and where and why you fail.

    I recommend having a read of "Autism and Asperger Syndrome in Adults" by Dr Luke Beardon

    Around page 88 there is the following:

  • in reply to Entropy

    It took me 2 years from the time of being referred for diagnosis to actually receiving my official diagnosis. Often, just getting the clarity and understanding yourself better through diagnosis can give you more confidence and peace of mind in who you are. At least, that's what happened for me. 

    I definitely think it's worth taking it up with the GP you know and you can even explain that you just don't feel like you were heard properly. You can reiterate that you wish to be tested for ASD because you're confused about certain aspects of yourself and your life and because people you know have said that they think you have multiple characteristics of ASD. If they try to say that it's because you didn't meet the checklist criteria for being put forward for referral, say that because autism affects everyone differently, those boxes might not be accurate for absolutely everyone with ASD and that only the specialists can really make that official diagnosis through a formal assessment. If you are okay waiting a couple of years for an official assessment and verdict, I'd say it's worth it.

    The time in limbo between referral and official diagnosis can be a little daunting though. I personally went through a confusing period of wondering who I'd be if they came back and said I didn't have ASD. Like, what if I just end up back at square 1 where I suck at various aspects of life and don't understand why I am the way I am? So, I think it's normal for you to feel confused about whether or not you may be autistic and what it would mean for you if you are or aren't on the spectrum.

    Just remember that whether or not they decide that you have ASD, it's totally okay to be different to others and just be yourself in all that you are and any struggles that you may have.