• Replies 3 replies
  • Subscribers 81 subscribers
  • Views 1406 views
  • Users 0 members are here
Options
Related
Hints and tips
  • To quote someone's message, first select/highlight the relevant text, and then use the Quote button that appears
  • To "mention" someone, type @ followed by the start of the forum name, and choose from the list; that person will get a notification of being mentioned

female autism in adults - awareness and misdiagnosis

NAS68232

Hi,

I am new to this forum and fairly new to the autistic community so am going to try and summaries my experience. 

Im 24 and my therapist has referred me for an autism diagnosis (something i definitely have). Ive been passed around mental health services/doctors etc since 15 and been diagnosed with various things such as social anxiety, depression, traits of BPD and OCD. Before my referral I was ready to give up with getting help because therapy etc has never helped me and i started to believe i was just broken. but since reading on female autism it has completely changed my mindset and everything has made sense.

As someone who has lived a fairly "normal" life with a bunch of friends, went through university and had many jobs, this is something that I know will be hard for those who know me to accept or believe. 

The fact it has taken 24 years really frustrates me because I know a lot of my problems could of been answered years ago if id just had a diagnosis. **LONG STORY SHORT** I'm really considering making some sort of fundraiser/website/petition for autism awareness in females. The lack of research, knowledge and help online and from GP's is absolutely terrible and something that frustrates me. Does anyone have any opinions or suggestions on how to do this? or if this already exists?

Im sick of the misdiagnosis and awareness of female autism and i really really want to change that

thanks :) 

  • Hi,

    Your story sounds fairly similar to mine! I'm 26, and only now starting to come to terms with the idea that it's very likely I'm autistic. This only came after stumbling across the alexithymia Wikipedia page after a frustrating conversation with a friend. But from there I found a lot of really helpful stuff on Instagram.

    There's an #actuallyautistic tag, that tends to have a lot of really good information, and generally, only people who have autism and run their own accounts use it. There's definitely people on Instagram that would call themselves advocates, and probably know a lot more about websites/resources etc. A few I'd suggest off the top of my head: 
    theautisticlife
    the.autisticats
    joyfjohnson
    autistictyla

    Just to put a few out there. I'm sure you could DM any of them and they'd be very happy to help.

    I definitely agree that it's something that's glossed over a lot, and seems to be premised with a hundred misdiagnosis before actually getting there!

  • in reply to NAS68234

    Hi,

    thank you so much for your reply! I think your book sounds like an amazing idea and please do let me know if you need any help from someone else’s experience too!! I’d love to read it once you’re finished and I think it would be a great help to a lot of people :) 

    it’s good to know I’m not alone with my frustration about the research, even though I wish that wasn’t the case Disappointed

    good luck x

  • Hello

    I am also a female on the autism spectrum. I was diagnosed when I was 23 and was diagnosed with BPD before autism.

    I have also been frustrated by the lack of research and knowledge on female autism and in response have made a start on trying to write a book about a teenage girl with undiagnosed autism using the concept of a small person in her brain to hopefully help a non-autistic reader gain insight into what is going on inside her mind, particularly around camouflaging and masking (it's hard to describe the idea clearly, sorry). I have been using Google Scholar to try and produce a female character who wasn't me but would still be diagnosed as autistic and the lack of research has been disappointing.

    I'm sorry I don't really have any helpful answers to your questions in terms of things that already exist or definite ways to improve things, I just wanted to let you know that you're not alone in your frustration and desire to make things better and I am trying to make a difference in my own small way :)