How have I got this far before actually considering being autistic?
So this whole diagnosis thing happened really quick for me, the whole process started back in November when I went on a weekend away with friends. I’ve always struggled with going away with people, because well… autism.
I always really look forward to it and can manage well for like a day but the first evening I’ll start to go quiet, take myself away for a bit or just have a secret meltdown. But this trip was different in that I just couldn’t keep the mask up, I think maybe because I’d been at work all week so was already mentally exhausted. (I usually try to plan things with friends in my holidays from work).
I spent a lot of time out of the house walking the dog, or finding excuses to be alone for long periods. I was incredibly relieved when my friends said they would drop my other friend off on the way home, who I’d travelled with, I honestly couldn’t have done another hour of socialising. I got home and I just slept and cried and thought this is just not right.
Then a week later I watched some documentaries on autism and came across one, which talked about female autistics and BAM everything they said was me all over. I remember turning to my parents and being like ‘this is me, this is just 100% me’ and initially they couldn’t see it, but I kept asking them questions like: think about how difficult I found it to fit in any social groups, the meltdowns I used to have when you tried to get me to go anywhere new and they started to see the similarities.
For another week after that it’s all I could think of and I researched female autism into the early hours of every morning – which I should have known then as a sign… special interest alert?! After writing myself a 3 page document on all the things that made me think I was autistic I went to speak to my therapist. It was probably the best conversation of my life.
I cut to the chase straight away and said: ‘look I’ve been thinking about something for a few weeks now, and I think I know what you’ll say but I just wanted to check this out with you. I think I might be autistic.’ She gave me the biggest smile, held her hands up in the air and said ‘oh you’ve finally arrived’ and I just cried and cried with the relief I felt that this wasn’t just all in my head. Now since then, many people have asked me ‘why didn’t she tell you?’ so I shall explain. I’ve been working with my therapist for the past five years and she’s incredible, I’ve had therapists in the past who have just never quite got me (and now I get why!) but in the first session she fully understood me. She told me that she knew I was autistic within the first one or two sessions and she has dropped hints to me many times since, like ‘you find eye contact difficult don’t you’ and ‘do you think [your family member] could be autistic?’. In the last session she asked me if I wish she had told me and I confirmed her thoughts that no, I think it was something I had to get to myself and like I didn’t accept my depression for so long, I don’t think I would have accepted an autism diagnosis until this point.
The diagnosis process
I got referred straight away to a clinical psychologist by my therapist. I am extremely fortunate in that I have the means to pay for a private assessment because I could have been waiting for years through the NHS. The psychologist was amazing and the whole process was just amazing. It was so cathartic to discuss my life from a new angle and for someone to listen and just get it. We completed about a two-hour interview about my life in stages and then she did an interview with my parents about my development from birth to around five (basically the stuff I couldn’t remember). There was so much interesting stuff that came up in their interview that I had no idea about, including that I tip-toe walked, I didn’t pick up on other people’s emotions and that I had really regular shut downs where I just wouldn’t process anything around me and looked completely vacant.
I didn’t need to do an ADOS assessment to confirm the diagnosis, I met criteria just based on the amount of information we gave the psychologist and really for her there was no doubt from that that I was autistic.
What did it feel like to receive the diagnosis?
Well actually I have never experienced anything quite like that feeling, it was just colossal. All the guilt I’d held for being a bad friend, girlfriend and daughter just dissipated. I finally understood the feeling I’ve felt every single day since being a baby. It was confirmation that the internal feelings were real and they finally had a label. In that moment I understood myself more than I ever have and I connected with an identity I never knew I needed. Honestly, it was one of the best moments of my life.
I’ve always been labelled by teachers as ‘quirky’ and ‘eccentric’ from being little and my parents were always so proud that I had this unique sense of humour. For me, I never understood why they thought of me that way, I was trying so hard to blend in I really gave it my all and yet I still stuck out to those adults. I left the ‘shy’ little girl behind and tricked my mind into appearing confident when I went to university. I created this new persona (by copying other people) that allowed me to talk to anyone and not be scared of situations. But yet I still got called ‘weird’ by the people in my halls. Most of my female friends didn’t get me or like me when they first met me. I guess I wasn’t as good a chameleon as I thought and that’s okay. Now I feel like I don’t need to try to fit in now.
To read more about my experiences post diagnosis read: I found out I am autistic at twenty-six, now what?