My ASD experience — Scope | Disability forum
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My ASD experience

Bellholzo Community member Posts: 2 Listener
edited February 2017 in Autism and neurodiversity
For my whole life I've been experiencing many symptoms of ASD but was unable to put a possible name to it until the last year or so when I actually began speaking to other people who had been diagnosed and relating in so many different ways. I've been diagnosed as having general anxiety disorder and major depression aged 17 but it was one of those diagnosises that was a one appointment thing and not very indepth.

I went on antidepressants for several years and they made me very sick and didn't do much to resolve the issue. I've suffered very severe panic attacks in the last few years which I've managed to tame on the most part by switch from antidepressants to beta blockers, but I still feel the overbearing weight of ASD symptoms.

Being 22 next march, I'm a little nervous about approaching anyone about it, I find it hard to speak to people I know because of the worry of being judged, the concept of seeking diagnosis makes me very nervous but I know I need it because one of the biggest things holding me back in life is the intense doubt and uncertainty that rules my life and how I see myself as a person.

I don't feel like I "know" myself. My other source of nerves is my previous experience with mental health services, when I've approached GP's in the past and tried to explain that I feel this isn't anxiety or depression and something a little more widespread and deep-rooted (family has a history of mental health issues) I've been somewhat diverted, outright told I'm wrong or making too much of a big deal out of it which included being laughed at (because I imagine the way I struggle to express myself sometimes).

When I was put into CBT therapy for anxiety for the third time in 3 years (waiting list of roughly 8 months each time) I broke down on the second session and tried to express something I didn't know how to voice (I didn't know it could be ASD at the time.. but I knew it wasn't what they were stating it was) and instead of help and support I genuinely was met with someone who yelled at me and caused me to completely go into hysterics and I was discharged after that. I've been terrified to even mention therapy or seeking the diagnosis ever since. 

At this point I'm not sure what to do.. i have no idea where to start.. if it means seeing a new doctor at a different practise I will try that as I have recently moved. And if so any tips on how to bring it up as i really do struggle with human interaction especially with such an important and nerve wracking subject.. any kind of guidance there would be massively appreciated.

Most of the time I have to rehearse conversations and it helps to have other people giving me input beforehand. I work full time from home and support myself but I won't leave my house for weeks at a time and can go without human contact for months with the exception of my partner. If there's some sort of organisation that could help me be put in contact with a specialist who can help with adults getting diagnosises as I know It's more tricky that diagnosing children.. I would really appreciate any help or guidance. 

I don't want to doubt myself anymore. 

Thanks in advance,


  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,671 Disability Gamechanger
    Hi @Bellholzo thank you so much for sharing your experience.  This is such a warm, friendly community and we have lots of members who have had an ASD diagnosis who I hope can offer you their experiences and information.

    @VioletFenn @DannyMoore @Jack_W @kathyj @jamieknight  can you offer any support to Bella?
    Senior online community officer
  • jamieknight
    jamieknight Community member Posts: 10 Listener

    Seeking a diagnoses is very important for many as it's a validation of there identity.

    For me it helped me to understand and accept myself and also helped me find a supportive community.

    However the thing about diagnoses is that they are not very useful for much beyond identity. There are few to any autism services out there and mostly anyone with an ASD diagnoses will be sent down exactly the same support channels you have already been down. (With the same outcome of it being very unuseful).

    With that in mind my advice would be that rather than seeking a diagnoses, seek out support via the social care route.

    Everyone had a Right to a need assessment by there local social services department. Normally you can apply online for it too.

    The needs assessment should take in the impact of your difficulties on you life and then from there suggest support etc. If it does then the next step is to gather evidence and build up to an appleal. Ironically, social services may then arrange an assessment for you in order for them to reach a decision.

    In the mean time, if you can afford it getting a support worker via private channels is very doable. 2-3 hours a month will cost about £30-45 and they can be incredibly helpful with things like paperwork and advocating etc.

    i hope that helps. Feel free to contact me via my website ( if you would like more help.


    Jamie + Lion

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    [Deleted User] Posts: 740 Listener
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  • Bellholzo
    Bellholzo Community member Posts: 2 Listener
    @jamieknight thank you for responding! I think it is a bigger need for me because I am a public figure online and have been ruthlessly judged over the years and a lot of those things can be put down to what I believe to be ASD. I was also bullied in person too which is why I tend to not leave the house. I used to be able to manage simple shopping trips but now I get a complete sensory overload and I feel like I'm about to faint every time I go to the co-op! It's not good! I believe that the responses I've had would have been much easier if I'd been able to explain why I am the way I am. Although there's a stigma with ASD as much as there is with anxiety and depression, I still think it would have helped massively. I've had nothing to defend myself with over the years and the self doubt has honestly absolutely destroyed me.. I've been this way my whole life, I've been different, I've been out of place and I've been treated grotesquely because of it and judged as something "just being wrong with me" as a person rather than having an actual disorder which people may have backed off with if they'd known. I think it's important because i can then explain to the various people in my life why they've experienced what they have with me but also all of those who've treated me so horrifically throughout my life may learn a little if they realise that they'd been coming after me for things I could not help. I'm stuck in life right now and I think it would take a lot off my shoulders massively!  

    In terms to the assessment, what sort of support is given to people? i only ask because a few years back I had several assessments for things like PIP so I didn't want to go back through anything like that as it wasn't a fantastic experience! I'll do some reading up online, does it still mean I'd get a diagnosis of some sort? My biggest issue is not having it proven. But I'll definitely look into it now. Thank you so much for all your advice and insight, I'm superb new to this! 

  • jamieknight
    jamieknight Community member Posts: 10 Listener

    A formal diagnoses won't stop people judging you or being abusive. 

    Even with an ASD diagnoses people will still assume personal defects etc. If people are already emotionally attacking you then a diagnoses probably won't stop them. They will just tell you it's wrong, or that you where faking or something like that.

    It's a huge question and I know the personal impact of not knowing is high, however a diagnoses itself doesn't fix anything.

    If you gained a diagnoses you will just end up getting an extra label on your file. It probably won't change how the mental health services treat you.

    My advice would be to not obsess on the diagnoses at this stage but to look at the pragmatic changes you can make to make life less challenging. This is where a social services needs assessment comes in.

    A social services needs assessment is when you formally asks social services to consider your case for social care. You'd get assigned a social worker and they would work with you to develop a support plan. Normally it's a visit from a social worker who asks lofs of questions about your challenges.

    They may even feel your current situation is abusive and be willing to provide something like supported accommodation so you can gain independence away from people who are mistreating you. 

    hope that helps

    jamie + lion


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