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Don't know whether to go get a diagnosis - any help!?

ohhello!

Hi there, this is my first post on here so I'm really nervous but I want to know what you guys think and if you have any advice for someone in my situation. Essentially, I'm a 17 year old female who has been made to feel like a freak her entire life. I've always struggled making friends, eye contact is a massive struggle for me, along with many other things. For most of my life, the idea that I ever could have autism seemed like a weird concept because despite all my struggles, I still am relatively extroverted and don't have much sensory sensitivity. 

From this, you're probably wondering how I even began to suspect that I may be autistic. These suspicions began in February time when my school counsellor who I'd been seeing since September had told me that she needed to break confidentiality due to me being in a crisis and a potential danger to my own safety. The school counsellor talked to my head of house (he's responsible for pretty much every issue related to my wellbeing at school) and then he phoned in my mum so that they could have a chat about me and how I was doing. I wasn't there for this chat, but I was later told by my head of house that it lasted just under 2 hours. My mum told me that at the end the two of them had come to the conclusion that I may potentially be autistic due to many of the traits that I show and the very evident social gap that exists between me and those around me. When I found this out, I did lots of research on autism and even wrote a 3 page long list of reasons why I may potentially have it - my symptoms were listed under relevant subheadings. I talked to my mum about getting an assessment and she said that she didn't want me to, even though she thought I was autistic, because she didn't want me to be labelled with something that has such negative connotations in our society. She then told me that I could wait until the summer holidays and see if I still wanted to pursue a diagnosis then. The summer came and I wasn't really struggling anymore, I'm now out of crisis. The whole idea of getting a diagnosis isn't at the forefront of everything anymore as I'm starting to make more of an effort to feel better. But then I saw an instagram post about autism and it made me think about things again. Maybe I am autistic, maybe I should pursue that diagnosis? Now I know that my local NHS trust uses something called Healios for the diagnostic process which apparently cuts down wait times so that shouldn't be a problem for me and also many of my teachers/staff at school are behind me going and getting a diagnosis (unfortunately we don't have a SENCO who can conduct them at school). But, my main obstacle is my mum. Obviously in autism diagnosis they'll want to chat to her but her resistance to me going out and getting one makes me scared. Not only that, but I don't exhibit many of the typical autism symptoms such as sensory sensitivities but I experience a lot of social and communicative problems. My mum told me about a month ago that my issues seem to have gotten worse in teenage years which means that it's probably repressed trauma from being bullied in primary school or something like that which makes me wonder even more. I don't think I'm traumatised as I have next to no symptoms associated with PTSD or having trauma. I honestly don't know where to go forward. Can anyone help?

If anyone has any advice or even any experience getting diagnosed on the NHS (specifically with Healios as that's what I would go through) then please reply to this or send me a message. Anything will be greatly appreciated. 

Have a great day!!  Slight smile

  • Hi! Ultimately it's your decision - not your mum's or anybody else's. Lots of the things you mention in your post are consistent with being autistic. And if you did go and get a diagnosis, you wouldn't need to be 'labelled' because it would be entirely up to you who you disclosed to. You have a right to know what is going on - and also a right not to seek a diagnosis. It would, I think, help you, though. I'm a bit biased because it helped me, but it's very much a personal decision. My main advice is to make sure that you make the decision that you think works best for you.

  • in reply to Emily

    Yes, good point.  I had a BPD misdiagnosis too because they didn't spot the autism even though it was blindingly obvious.  It then cost me a fortune to disprove the original diagnosis by people qualified in both areas and properly able to distinguish between the two and then fight hard to get the diagnostic position straightened out for my own safety.  The BPD misdiagnosis is really common especially for autistic women.

    If you're autistic, a diagnosis now may protect you from being treated for the wrong thing later.  And believe me, being treated for a condition you DON'T have, whatever the erroneous diagnosis is, can be very damaging.

  • in reply to Dawn

    in my case completely omitted because of language barrier

    I did write a very long essay about my childhood and relations with family members instead

    decribing my feelings and thoughts that accompanied the events

  • This really is your decision, not your mum's.  You are nearing adulthood and it's your life.  You'll be 18 by the time your turn comes.

    Yes, some people shy away from the label and others can react with prejudice - but that's IF they know and it's your choice to tell them or not.

    All I can say to you is that I was 56 when I worked it out and I wish to God I had known in my late teens.  Not only does it make sense of my world in a very positive way, but that knowledge could have saved me a lot of heart ache especially with MH services.  A lot of things need to be managed differently if you are autistic and you won't get those accommodations without a diagnosis.

    You also seem to be expressing some reservation as to whether you are autistic.  Well, a well done assessment would at least put that to bed for you one way or another.  If you aren't they might have a better explanation for you as to what the problems you've faced are actually about.

    Don't worry about your mum.  she'll probably come round and if she doesn't want to participate, you can give them the material you have from school etc and they can talk to you about how you remember your childhood.  Not everyone has a parent they can refer to and there are other ways around this issue.

  • keep pushing them so they don't delete you accidently from waiting list, once a month recommended, the way you prefer

    I'd rather go in person than phone call. but really I'd rather sent an email or text, but surgeries don't do that

  • Hello! I'm 26 and recently pursued a diagnosis through the NHS and honestly I had doubts about doing this but I'm so glad I did. The whole experience was so validating and so many things about myself now make sense and I can start to properly support myself. I have been misdiagnosed with anxiety, depression and borderline personality disorder and I spoke to the clinical psychologist who diagnosed me as autistic and she reassured me that these were inaccurate diagnoses due to a lack of understanding of autism. I was also nervous about my mum being involved in the process as she didn't want to believe that I was autistic, I was able to select that I didn't want my parents involved in the process and they weren't contacted. I hope this helps!