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Self diagnosis of Autism

Sam_Alumni Scope alumni Posts: 7,682 Disability Gamechanger
edited April 2019 in Autism and neurodiversity
There is a debate on twitter at the moment regarding people who self diagnose with Autism. Some people are questioning the validity of self diagnosis and even questioning the motivation behind someone diagnosing themselves with Autism.

Many people are stating that formal diagnosis can be very difficult to get for all manner of reasons especially in later life and that self diagnosis is generally part of the process of recognising that a person is not neuro-typical 

I spoke to @VioletFenn who was our Autism advisor, she was diagnosed with autism at 46, Violet said:

"If someone tells me they are autistic, then I believe them. Even if they're 'only' self diagnosed. Becuase there is no 'only' about it - there is no hierarchy in autism. There is also very little to be gained by anyone who would be daft enough to fake it. It is very rare  for any adult to be given an easy ride for life specifically because they are autistic. Most only realise after years of being unable to fit in and we're just relieved to know what is causing it. So it doesn't matter whether someone has a piece of paper or not - if they really think they're autistic then they probably are. And it's no hardship for other people to just give them a bit of consideration."

Undercoverautie on twitter said:

"A few things to say about autism self-diagnosis.  You do not suddenly ‘become’ autistic when you receive an official diagnosis. You were autistic before you knew, when you self-diagnosed or suspected, and after any official diagnosis.
I have never come across someone who appears to be claiming to be autistic on a whim or for ‘political reasons’. If I did, that would not change my mind. That would be 1 out of countless others who do a lot of research and finally understand themselves because of self-dx. The feeling you get when you’re autistic and finally realise it is one of everything finally making sense. I had it and most others I’ve heard from have had it too. It felt like my life made sense in a way I had never experienced before, even with other diagnoses."

TezMiller compared it to getting a diagnosis when you have mental health challenges:

"Just like in my teenage years when I suspected I had depression (which was confirmed as Major Depressive Disorder by my general practitioner), I took an online test, and then booked to discuss it with a medical professional, and received a formal diagnosis. I need the formality."

The National Autistic Society says:

Am I autistic?

You may be wondering if you are autistic. Perhaps you have read something about autism, or seen a programme on TV, and think that it describes some of your own experiences.

It's quite common for people to have gone through life without an autism diagnosis, feeling that somehow they don't quite fit in. Many people learn to cope with life in their own ways, although this can be hard work. They might be married or living with a partner, have families or successful careers. Others may be more isolated and find things much more of a struggle.

It is up to you whether you decide to seek a diagnosis and some people are happy to remain self-diagnosed. The only way to know for sure whether you are autistic is to get a formal diagnosis.

Benefits of a diagnosis

Some people see a formal diagnosis as an unhelpful label, but for many, getting a timely and thorough assessment and diagnosis may be helpful because:

  • it may help you (and your family, partner, employer, colleagues and friends) to understand why you may experience certain difficulties and what you can do about them
  • it may correct a previous misdiagnosis (such as schizophrenia), and mean that any mental health problems can be better addressed (however, it can be difficult to make a diagnosis of autism if you have severe mental health issues, or if you are having treatment
  • it may help you to get access to appropriate services and benefits
  • you will be entitled to have reasonable adjustments made by your employercollege or university
  • it may help women, and those with a demand avoidant profile, who may not before have been recognised as autistic by others
  • you can join the autism community – you don't need to be diagnosed to join our online community or subscribe to our Asperger United magazine, but you might need a diagnosis to join some social groups.

Although you don’t need to be diagnosed to have self-belief, some autistic people welcome the diagnosis as a way of making sense of their life experiences and being able to identify with other autistic people.

What do you think? Have you had a diagnosis of autism or are you self diagnosed? Do you think it matters? We would love to hear your thoughts on this, but please remember it is a sensitive subject so please be polite and non-confrontational in your posts.

Senior online community officer


  • Ami2301
    Ami2301 Community Co-Production Group Posts: 7,948 Disability Gamechanger
    Very interesting to read, thanks @Sam_Scope :)
    Disability Gamechanger - 2019
  • Zaid_Scope
    Zaid_Scope Member Posts: 66 Courageous
    Fascinating perspectives here @Sam_Scope. Close to my heart this thread. 

    Scope Employment Advisor
    Phone: 0300 222 5742
    Email: [email protected]

  • debbiedo49
    debbiedo49 Member Posts: 2,904 Disability Gamechanger
    I’m not sure about online assessments to diagnose autism. 
    How accurate are they?
    Also, a couple of times when my son has been mentally unwell, when he has been looking for help from nhs, they ask “have you ever been tested for autism?”  We would have never considered that until the words were put in our mouths.  I don’t believe my son is autistic but we don’t know if he should be tested. So far, he doesn’t want to be and he doesn’t know if he is or not. He is 19.
    It makes me feel that services are going down that road first.  Perhaps jumping on the autism train. I don’t mean that in any derogatory way. 
    Its so hard to get lots of health conditions diagnosed and get support. I think that’s why folks are going online to self diagnose. I know I do it. 
  • Geoark
    Geoark Member, Scope Volunteer Posts: 1,382 Disability Gamechanger
    I have not gone for diagnosis and not sure I will now at this point.

    When I was initially researching aspergers to help my daughter when this was mentioned as a possibility and put forward for assessment much of what I read was more relatable to my own youth and life experiences than to my daughter. I was kicked out of primary school for violent meltdowns and spent the next 10 years in special needs education. I always wondered about that since I have never been informed of a diagnosis which would have justified the extra cost.

    Initially I just said if I was diagnosed I would not be surprised. More recently I have come to accept that I probably am. This is because in accepting it is a possibility it has enabled to me to be more self aware of what is happening to me and that it is my perception of the situation, rather than the situation itself. Situations which in the past I would have reacted negatively and allowed to fester I can let go off and move on.

    This is good, as the team I work with quickly catch on when I am out of kilter and will either speak to me quietly about how I am feeling or let my manager know as she can talk to me honestly without offending me. She is also very good at picking up the tell tale signs when I am starting to get frustrated and will step in so things do not get too stressful. Where previously I would have taken this negatively I can now accept comes from people being genuinely concerned about me.

    It also helped me to recognise that I have a pattern of drifting into comfort zones and to actively seek pushing myself outside of my comfort zone to achieve things I would never have done or considered doing. 

    If for some reason I do decide to go for diagnosis later on and find out I don't have aspergers would this really make a difference? I am far more comfortable in the person I am and the changes made because I believe I am makes me happier than I have ever been before. 

    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • vysvader
    vysvader Member Posts: 134 Courageous
    edited April 2019
    My first contact with an online test measuring AQ (autistic-spectrum quotient) came from a certified medical practitioner (so I just move further her words, the words of a psychologist). Because it's the same, the tests must be standardized to be recognized by a government body and psychologists/psychiatrists too, so either any GP uses the same sets of tests that is possible to find online (I don't mean that all of the online tests are official, but the official tests are published online).

    The bottom line giving a place for a medical practitioner is that the symptoms that the tests track, it can be also caused by other factors and it's not surely reliable that it's always because of neurodiversity. Some medical practitioner can recognize (and deduct) other factors if a high result of an AQ test is caused by something else or it's really because of neurodiversity.

    The real doubt isn't in the testing methodology rather than how well the result can describe the distinction from the rest of the population. One can be a bit doubtful about the diversity and shares of (usually asynchronous) symptoms because it's just a spectrum (it's not black/white, it's a spectrum), 2% of people in the range of AS (3.6% of males)? Well, but how many people are having an AQ in hights above the average? If one reaches 32 points and is considered on ASD then the person with 31 points doesn't pass onto ASD but yet still is with an AQ above the average. It's not 2%, within the curve of a normal distribution, it seems to be like 1/4 of the population above the average (the official bell curve representing the normal distribution of AQ in the population)
    You can feel free to get in touch 
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,682 Disability Gamechanger
    @Rhubarb71 said:
    "I’m self diagnosed, I go through phases were I feel an official diagnosis would help me, but then think, why, I’ll still be me so what would actually change.  I first heard of Autism 18 years ago, when they diagnosed my then 4 year old daughter.   I went to a “talk” by Wendy Lawson and I was, she’s just talking about me. And everything made sense.    I now have another two daughters diagnosed.  I pushed for one of their diagnosis because I felt it would help her get more support.  It didn’t really but at leas we know for sure. "
    Senior online community officer
  • Jamesfoad
    Jamesfoad Member Posts: 4 Listener
    When I was younger I overheard my mum and the wife of one of my brothers friends talking about the possibility of me having Aspergers.  My brothers friends wife said we could get a diagnosis, but my mum decided that it could cause to much upset and problems.  As far as my mum is concerned I have Aspergers and more recently my brother and I had a conversation as I had recently lost my Job, My brother more or less told me I needed more help than most because of My Aspergers.  I pointed out that I had never had a diagnosis, so no one could actually make this assumption even though my brothers friends wife worked with people with Autism.  I'm not denying there is something wrong. But before the conversation with my brother I had decided and am awaiting an assessment.  Although I would like it to come out that i"m not Autistic, I don't think it will.
  • Adrian_Scope
    Adrian_Scope Posts: 8,366

    Scope community team

    Thank you for sharing this @Jamesfoad. Do you wish your mum had decided to seek a diagnosis when you were younger?
    I think it's important to remember that whatever the outcome of your assessment, you're still the same person you were the day before you had the results.
    I hope you'll keep in touch about your assessment and let us know how it goes and if you need any support or advice at all, don't hesitate to let us know.
    Community Manager

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  • Jamesfoad
    Jamesfoad Member Posts: 4 Listener
    Thank you for your reply Adrian_Scope I do wish mum had decided at the time to get a diagnosis as I wouldn't be wondering now if I have got Aspergers or not and I would feel confident with my employment an would know what adaptions if any I may require
  • dolfrog
    dolfrog Member Posts: 441 Pioneering
    Scope need to explain that Aspergers is no longer a clinical diagnosis. Have a look at "A Concise History of Asperger Syndrome: The Short Reign of a Troublesome Diagnosis"


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