Autism and Aspergers
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Getting an ASD spectrum diagnosis - is it worth it?

Neil2017Neil2017 Member Posts: 157 Courageous
edited December 2017 in Autism and Aspergers
i am wondering whether or not it is worth getting a medical diagnosis for autism? Having read some of the articles on the Scooe forums and some NHS material and some people suggestions I believe I may have the condition if not in a mild form. I am in my 40s and had significant sight loss about 6 years ago through Cancer and another disability so am already registered blind. Have found it difficult to get back into work and stay in paid work in the last couple of years. So wondering if being formally diagnosed will either be a help or another barrier to being accepted or fitting in?



  • sleepy1sleepy1 Member Posts: 299 Pioneering
    Hi Neil 
    If I lose my glasses its a big deal so cant imagine how bad it must be for you.  I think having a diagnosis will help, even if it is just so you know what you are dealing with and can do more research.

    ATB Rosie
  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,730 Disability Gamechanger
    Hi @Neil2017
    This was a questions that came up before on the community, you might like to look at this post to read about other people's experiences.

    You can also read @VioletFenn 's post about getting an ASD diagnosis at the age of 46.
    Senior online community officer
  • Neil2017Neil2017 Member Posts: 157 Courageous
    Thank you @Sam_Scope for the link
    Thr more I read and see about Autism the more I confirm that I am Autistic or on the ASD. I watched the BBC programme Employable Me last night with two Autistc candidates on there. I can see I have a lot of their mannerisms and behaviours.
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  • GeoarkGeoark Member, Scope Volunteer Posts: 1,375 Disability Gamechanger
    Hi @Neil2017 when aspergers was first mentioned for my daughter I did a lot of research. What really hit me was how much I was reading seemed to apply to myself rather than my daughter until I started finding posts about autism in girls/women. 

    I mentioned this to someone who I thought knew me well and I trusted and they immediately dismissed it. Interestingly the reasons they gave for dismissing it only showed me how well I had learned to cope with it.

    Fortunately my current boss picked up on it pretty quickly, fortunate because she has a good understanding of it. I hate social activities but being chair of a non profit had to find ways round this and could avoid situations I could not cope with. One of these is parties are a nightmare to me, as are pubs. As I explained to her because all the noise becomes a wall of white noise it is hard for me to constantly concentrate on what is being said or going on, but I have learned when to smile and laugh by taking clues by what others are doing. Because it is important to her I do attend the annual team Christmas dinner, but go home afterwards rather than going to a local club, I don't bother with the work christmas party.

    Is it worth the diagnosis? I don't think it is for me at this point, I work with a team where 50% have disabilities of some sort, and regularly give work experience to others through Mind's Leaning Disability Work Experience. They are used to me suddenly including them in a conversation that I have had in my head for the last ten or fifteen minutes and they don't have a clue what I am talking about. I can cope with telephone calls, and they don't have a problem if I suddenly say I cannot cope with this and take a break, usually coming back knowing how to resolve what has frustrated me. Plus as long as I don't ignore the phone they are happy for me to have headphones on listening to music, or just with the noise cancelling turned on so I can concentrate on what I am doing.

    I do believe there are advantages in getting diagnosis especially if you need accomodations which might otherwise be difficult to get. But more importantly if you are not sure, and there are other conditions with similar traits. The fact you are asking the question is probably a good indication that it could be right for you. Once you have the diagnosis it is worth remembering it is always up to you who and when you choose to disclose it. 

    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!

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  • Neil2017Neil2017 Member Posts: 157 Courageous
    Thanks for your input @DannyMoore and @Geoark

    Myself I do believe I am somewhere on the AUtism spectrum from all the information I have seen. I’ve never been good at social interactions especially in groups, very anxious at job interviews, okayish at receiving calls, but sometimes really have to push myself in making them. Nor with social imagination do I have much of imagination nor remember events that much but remember a lot of facts

    I have lots of other symptoms like sensory ones. Taste for instance seems to be very accentuated on certain foods. Sounds at tInes I can often enjoy like music but at other times I can find the slightest background noise irritating. Plus with mobility I saw someone say they walk quickly with head down - that is me often!

    iIt is really my parents and close relatives who do not think it and say oh it’s because you’ve been through this and that as a primary school age child and not learnt or missed out on stuff. Other people working in the charity sector have indirectly hinted I am.

    Although I am getting more and more what kinds of behaviours, symptoms etc define autism, what I struggle with is it another label by the medical profession to define people? People that used to be defined as shy, introvert or reserved. Or is the subtle difference that shyness to some extent with training can be overcome whereas Autism can only be flagged up on when you’ve acted a certain way?

    I suppose for me as I am already registered visually impaired or blind (but with some  very usable sight) which I am constantly learning to adapt to the fear is will it just be another ‘label’ to put up with!?

    So possibly the main advantage might be for me having specific adaptations made in TGIF workplace if formerly diagnosed. 

  • GeoarkGeoark Member, Scope Volunteer Posts: 1,375 Disability Gamechanger
    @DannyMoore I think it is easy for most people to see elements of autism in themselves. For me though the real question is how far does it affect the individual, especially when they were a child or a young person. As I have gotten older I have learned coping skills and tend to be far more relaxed about what is going on around me. However if I am tired or stressed those coping skills can slip.

    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!

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