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please help - diagnosis anxiety?

Jade

hello, i’m 16 and this is my first time doing anything like this but i really need some support with this. three years ago now, i had my first session with someone from cahms and it was suggested that i could possibly have asperger’s (i know autism is diagnosed generally now don’t worry) and i was put in for an assessment. as i mentioned it has been three years now and i’ve only had an email saying it would take longer and my first attempt at fighting for help resulted in me being told i was quite far down on the waiting list. after it was first mentioned to me i did a little research and found i related to a lot of the symptoms people with autism were experiencing. many people have said to me that a diagnosis won’t do much but it means everything to me, i want that clarity, i want to be able to identify what could be wrong with me, i want to be able to identify what’s wrong so i can get the support i need say if i’m signing a form for uni or applying for a job. i feel so alone, i’ve been hesitating reaching incase i won’t be accepted because i haven’t been diagnosed yet and it’s really hard to talk about my feelings so i find it difficult to go into detail about how i feel with my parents. am i unfit for professional help? i don’t know how much more i can take of the waiting but i really need help and i don’t know where to start.

  • Dear Jade,

    Thank you for sharing this with our community. You may find the following page on our website useful:

    https://www.autism.org.uk/advice-and-guidance/topics/diagnosis/post-diagnosis-support

    You may also be interested in contacting a local National Autistic Society branch. Our branches offer support to local autistic people and their families. If you are interested in checking if there is a local branch near to you, please follow the link below:

    https://www.autism.org.uk/what-we-do/local-branches

    Our branches are volunteer-led, and as such every branch and group is different. Some are parent support groups, some provide support and information to autistic adults, while others have office premises and run their own drop-in service. You will need to check with a branch directly for more information on whether they are able to provide a particular service that you are interested in.

    If you were interested in starting a branch or group, please email branchservices@nas.org.uk

    Best regards,

    Eunice Mod

  • Really sorry to hear you're going through this. You ask 'am I unfit for professional help?' Absolutely not. You've explained very well why a diagnosis is vital in your case. Not because you 'need' it for acceptance in the autistic community (which will welcome and support you anyway, and you wouldn't be here if you're not struggling with being autistic or neurodivergent enough to have traits, but because for you you need that official validation, not least in order to even summon the emotional energy to start reading up more, exploring help, etc. I was exactly of the same mindset - I got diagnosed this year at 44 years old - and I found the 4-year wait too distressing so paid to go private with it. It's costly (£1000 on average) but maybe your parents could financially assist if you could convey to them how much you're struggling with this limbo? They wouldn't want you to be suffering this much, but I can understand too that you might want to keep this exploration of a potential diagnosis private from them until you know for sure. Not that not doing so isn't perfectly healthy!

    Worst case scenario though: waiting a few more months, which at 16 feels like an eternity (at my age it's the blink of an eye) - hang in there, maybe get the GP's input again as FS suggests, and hopefully you'll be assessed soon. But of course you deserve to have that process as much as anyone. Don't let 'imposter syndrome' get the better of you while you wait. You're here for a reason. 

  • Waiting sucks, waiting over three years is ridiculous. I recommend talking to your GP about this. Bring up the fact that you're worried about 'aging out' and make sure to say you've been waiting 3 years already. After that continue pushing, maybe talk to your parents about contacting your local MP? I don't know what support you're getting at school but you should know that due to long waiting lists schools are supposed to assess your needs and provide for them despite not having a diagnosis so see if that works. 

    Other stuff you can look for in the meantime: I don't know where in the UK you are so I don't know what local stuff is available but Kooth is pretty good for practical support and a vent space. 

    There are plenty of charitable organisations which can provides various levels of counselling without going through CAMHS.

    Look at what your local Young Mind organisation offers, and your GP may be able to make further suggestions for stop gaps to offer some support in the meantime. A lot of stuff are behind a wall of diagnosis, but not everything is.