Published on 12, July, 2020
Hi all,
My name is Kate and I am 29 years old. I have struggled with anxiety and depression for over 10 years now, and, over the last couple of years, I have begun to realise that I believe I am autistic.
I have been waiting for my assessment for over a year now, and the frustration is starting to get too much. I've always hated the need for people to have 'labels' but I feel like without a diagnosis from a doctor, no-one is taking me seriously on this. My husband doesn't seem to believe me, no matter how much evidence I show him, and I'm too scared to talk to my family about it because I fear they'll react the same way.
I have spoken to my husband and my sister-in-law about it, and all I hear from them is "Well I don't think you are, you act normal to me". It's like if you don't fit their definition of what a person with autism is, there's no chance you could have it, at any level. I just want someone to hear me out and support me, and I feel like the people closest to me should be doing that. I'm sure I'm not the only person to have experienced something like this, and I certainly won't be the last, but I just didn't expect it.
I have been hesitant to chase my assessment until recently, because I was scared that people wouldn't agree with me, or think I'm not 'autistic enough'. I also felt shame in myself, because I see the struggles of those with more 'severe' (for lack of a better term) levels of autism, who need considerably more help and support than I do. I felt like I didn't deserve help, because I'm 'not as bad' as others. This mindset still comes and goes, but I'm in a much better place with it.
If I think this could be me, why should I listen to anyone who doesn't know what they're talking about? I'm the one that's done the research and taken the necessary steps to get a diagnosis, it doesn't matter what anyone else thinks. BUT it does leave me feeling very, very alone.
Please tell me that there's other people out there that can relate to this? and if anyone has any tips or advice on what to do while you wait for your assessment I would be incredibly grateful.
Much love xx
I am 32 now, I am the opposite of you in the sense that you are aware of your possible diagnosis but I had no idea.
I have struggled with anxiety and depression since my early teens. After another poor mental health episode where I was in the hospital again. I went to my follow-up GP appointment but I was due to see yet another new doctor who I didn't know. I thought to myself "Great, let's start from the beginning again..." but this new doctor took a real interest in what I was saying, she had read my notes and during that consultation with her, she asked, "has anyone ever discussed ASD with you?". I had no idea what she was talking about, but she explained to me what it was and why she thought I might benefit from reading some of the resources she would send me whilst she got a referral started.
I could relate to so many things that I was reading, and it was so eye-opening to me. I made another appointment to see her because I had a lot of questions, and she was happy to sit and discuss it further with me. I took some notes about things that I do, like, dislike, and she patiently listened and explained how those things may be because of undiagnosed ASD. I started talking to my friends and family about it, the ones who I thought might be able to listen and not judge me, and a lot of them said that they couldn't see it. I was surprised by that response because I could immediately relate to so many traits. I realised that these people had known me and my "ways" for far too long that they had become unnoticeable.
For example, I've never been good with eye contact. I found it necessary to do it because I had always been told that I should look at someone when they were talking but it never felt natural to me. I found out that I may be masking to fit in. This did not happen overnight, of course, but it wasn't until I stopped trying to make "the correct" eye contact with people during a conversation and learnt to balance my eye contact that I felt less exhausted by just having a conversation with someone.
I agree with you about the labels, I am not and have never been a fan. Being labelled autistic at 30 years old was not easy for me. I have had to step in and say, "If there is something I need to learn or needs to be explained differently, then help me understand please understand because I have ASD and I learn better when... blah blah blah.". I know that I am not incapable of learning, and I will never allow ASD to be used as an excuse for me not doing something, not understanding something, etc. Stepping in on situations like this is not an overnight thing to learn, it takes confidence. However, I do it because I know that people will be supportive and are willing to take the time to say "Okay, what wasn't clear and how can I explain it differently?" or "Can we take the conversation somewhere quieter or where the lighting is different so you can concentrate better?". Not everyone is like this, of course, but you will be supported more than you might think.
My advice would be to continue with what you think is right and talk to your GP about why you think you might have ASD. Coming from a similar position as you, an outside professional opinion is going to help you massively. Get them to tell you about support services in your local area because they are out there. If the GP isn't very reactive then look into local and national adult autistic support services yourself and start making phone calls to get yourself appointments to discuss this with people outside your social and family circles. You have to do whatever you think is best, you know you better than any of those people think they know you.
Long post but hopefully, if you want, I can help.
Beagle Dad