Getting a diagnosis

Hello! I am wishing to remain anonymous, but I am 19 years old and female (she/her pronouns) and since January 2020, I’ve been looking into the likelihood that I may have autism!

My younger half brother has already been diagnosed (he’s 10 next March), so I thought my mum would be super supportive, but she’s been the opposite. Because I’m not exactly the same as my brother, I apparently, according to her, don’t have autism. She doesn’t particularly know what traits I have as I’ve hardly mentioned anything to her since she’s so against me having it.

I got up the courage late October to actually call my doctors back home (I’m currently at University so living away from home) and got an appoint with a GP who referred me. The place where referrals normally go isn’t doing autism diagnosis’ anymore, nor referrals, so I got “referred” to somewhere else (basically got told to call this support team!). The autism support person for that centre is attempting to help me, but she’s missed two appointments with me and was late to the first one. No one knows (at this moment) where I’m meant to be getting referred to and it’s causing me so much more stress on top of everything with Uni and Covid. 

I am getting support off Uni though, due to me showing clear traits and being referred (they even asked for evidence of the referral letter which I found weird). I’m just finding everything super difficult right now, especially with the change of living independently with my boyfriend and the fear of the unknown (there’s been a lot of tension in the household as someone was having psychotic episodes and as well, I’ve lost count of how many times I’ve told them to keep the noise down late in the evening (around 11pm-2/3am) and they don’t listen!)

I was wondering if anyone had any advise because I’m really struggling with it and I don’t have a clue what else to do other than save up money and go private (which is my last resort since it’s a fortune and I have a car to run/food to buy etc). Sorry if there’s any spelling mistakes etc!

  • i havent heard of projection, what’s that?

  • yea i know --- i was reading about 'projection' yesterday do know what it is ?

  • it is but there isn’t really anything i can do but wait at this stage!

  • sorry  it must be pretty shitty

  • i’m not enjoying the mess around tbh!

  • blimey what a mess !

  • just thought I’d give an update!

    No one knows where I’m going to be locally referred to and it may take months to find out Upside down The doctors ave opened an investigation about it since I’ve been declined by multiple people who are meant to do referrals

  • Ooo nice! Thank you so much I‘ll look into things :))

  • I got it from a credit as part of the Audible subscription. I didn't think I would make use of it but really have done. Have a look around and see if there is a free trial. If not and you don't want audible there are a lot of videos on YouTube around female autism.

  • haha thanks for clarifying i would’ve took it literally Sweat smile 

    I’m aiming to go into counselling psychology (but we will see what route things take me down)

    okiee, talk tomorrow 

  • buy a stun gun i found that useful Slight smile  ( this is a joke in case u take me literally ! )

    are u going to be a psychotherapist ?

    gg ( gotta go ,,,   talk more tomorrow u can tell me psychology stuff )

  • thank you! Uni is going ok, I’m studying psychology, but finding the change hard to deal with! the topic has a LOT of stuff to learn and it’s hard to do it all. Plus it isn’t fun with my flatmates aaaa

  • ok use good ear defenders. i have a pair that have a built in radio --- i can also play white noise on them, or plug them into a music source with a cable

    search amazon for ProTear eardefenders

    www.amazon.co.uk/.../ref=sr_1_7

    but how are u getting on in uni ? what are u studying ?

  • Thanks for you comment!

    I’ve had a lot to deal with recently and genuinely thought this was the best place to reach out!

    I just didn’t want to go get a lanyard and get ridiculed for wearing it (which my mum definitely would if I was to wear it in front of her!), if I don’t have an official diagnosis yet. I may get one once I know a little more about what’s happening :)) 

    I may look into giving the audio book a listen. Is it free or did you have to pay?

    Thanks again 

  • Hi,

    There's a lot going on for you right now. Well done for reaching out. I've had to self diagnose whilst on the waiting list. I believe you can get a lanyard, although I haven't done myself (mostly because I barely leave the house). 

    I've just started listening to the audio book 'Autism in heels' by Jennifer Cook O'Toole. Interestingly one of the this she spoke about was being approached by a mother that seemed quite unhappy her daughter may be autistic, when she seems to perfectly accept her son is. She muses it may be because the diagnostics are based on how autistic males are. 

    I just found the below written by her ( article: Pink on the Spectrum)

    "Not surprisingly, then, the constellation
    of behaviours, strengths, challenges, and
    tendencies that became the medical and
    public “profile of autism” (and Asperger’s)
    is distinctively, decidedly “male.” More boys
    are, logically, going to fit a profile that was
    created by observing and describing boys!"

    I think contributes as to why more and more women are discovering they are on the spectrum. 

  • Thank you so much for your reply!

    1. I didn’t know that was possible! Does this mean I would be allowed a hidden disability lanyard too or is that going too far?
    2. Ive got some reusable foam earplugs but recently I find myself taking them out because they hurt my ears (big sad)
    • already got a big list. some are traits and some are just “weird things” about myself
    • there’s only my brother (as far as i’m aware!) that has ADHD/autism (he got diagnosed with both i think i only put about his autism in the post!)
    • i genuinely can’t think of relatives tbh who have picked up on anything because they haven’t other than i deviate from the norms of society

    Thanks for the tips etc! i’ll look into things

  • 1. u r autistic u can simply self declare  " I am autistic " until u get a diagnosis. Thats the current UK law.

    2. buy rubber ear plugs and wear them at night --- i cover mean in baby bum zinc oxide cream to help get them in and to keep my ears disinfected  ( it works ).

    3. then wait on the referral people to get in touch with you. keep making appointments. dont give up its a hectic time right now just step back take 3 deep breaths .  

    in mean time  make a list of

    a. all autism traits u have

    b. list of people who think u r autistic  --- this is people who think u are autistic/weird/different

    c. list of all relatives who have autism diagnosis / called weird / called different  / have ADHD

    u cant effort to go private - its 1000 quid approx

    Recommended : check out if university/or nearby  has mindfulness, meditation  classes  if yes join u immediately. dont worry if its a group of buddhist. explain why u are there and they will look after you

    Recommended : look up on Youtube : Box breathing / square breathing  to deal with moments of chaos / panic attacks