Autism: My Late Diagnosis Experience

autism-my-late-diagnosis

A lot of people seem to think that receiving an autism diagnosis is simple, as easy as going into a doctor’s surgery, saying you think you’re autistic, and receiving a piece of paper which confirms it there and then. Although my experience of receiving a diagnosis wouldn’t necessarily be considered ‘the norm’, I’ve never heard of it being this easy for anyone.

The other day, 26th of January, marked two years since I was officially rushed through the diagnostic process on a boat of cancellations to receive a diagnosis in September of that year. That’s even quicker than I remember it being, but the process makes it seem like it a lot longer.

To be fair, suspicions about me being autistic didn’t even start here. The first time someone proposed that I might be autistic was when I was twelve, from my mum, after she attended a Tony Atwood talk. At the time I didn’t take it very seriously, but after watching a talk he did after my diagnosis, I can see why my mum thought what she did. A lot of what he said sounded like he was describing me exactly!

Like many people who receive a late diagnosis, my mental health has suffered since I was young. I haven’t mentioned it much on this blog before, but I spent between the ages of thirteen and seventeen in and out of mental health services, eventually ending up in a school for emotional needs when I could no longer cope in a mainstream environment.

Despite the involvement of mental health professionals, no one seemed to pick up on the fact that I was autistic until I was sixteen. Before then, my mum had mentioned it to professionals as a possibility, but everyone was quick to brush the comment off in the hope that whatever was ‘wrong’ with me was fixable. Even the school I went to said it was a highly unlikely possibility.

At sixteen, my mental health state was at its worst, and with all other suggestions exhausted, mental health professionals finally decided going down the autism route was beneficial. In a meeting where this was put into motion, my therapist’s line manager asked if I was autistic five minutes into my mum describing things about me.

Two months later, I was officially put onto the waiting list, told they’d get me through the system as quickly as possible because I was due to start college eight months later, and they wanted me to be diagnosed by then.

The first part of the official process consisted of questionnaires which were sent to my mum and the school to fill in, in order to get an idea of the traits I showed in my everyday life.

In second part of this four part process was a hospital appointment to rule out any other causes of my behaviour. For this appointment I had to take a parent so they could talk about my early life, and any genetic history.

The third part was so casual I almost completely forgot about it. In this, a woman visited my house to answer any questions my mum and I had about the possible diagnosis I had ahead of me, as well as to determine how I acted in an environment I was comfortable in.

The fourth part of this process was by far the longest, taking over three hours and leaving me exhausted by the time it was over. In this appointment, my mum was taken to another room to be asked a number of questions, while I stayed in the room we had been in to begin with to answer questions and complete activities obviously created for people younger than myself.

This process took the best part of three hours, after which my mum and I were left in the room I was in while the other three professionals went off to discuss the results. It was explained to us before they left that I may have to return for another appointment if they couldn’t come to a conclusion there and then, but thankfully this wasn’t needed.

Around half an hour later, the professionals came back into the room and I received my official diagnosis: Autism Spectrum Condition (ASC). One of the professionals in the room told me they were surprised it took so long to get a diagnosis because I showed a lot of classic signs.

I left that office scared of the journey ahead of me, but relieved that there was a reason to why I felt so left out surrounded by others my age.

So there’s the story of how I finally received my autism diagnosis. If you have any further questions about anything involved within the process, or want to compare this experience to your own in the comments below, please do! I’d love to start a conversation about this.

Thanks for reading, and until next time,

Goodbye

 

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36 Comments

  1. kassandrawerth

    28/01/2017 at 8:43 PM

    This is a powerful post, thank you for being strong and sharing your story ?

  2. Lia

    29/01/2017 at 12:13 AM

    My autism diagnosis was over several delayed appointments as well! There was the questionnaires, the just talking to me and my mum, and the activities too. They said that they started at age 3 and went up to age 18. A lot were about understanding literary material and what actually was happening which kinda didn’t help because I’ve always been very literary! I think it was more the talking with me that made them diagnose me. I’ve been through CAMHS since I was 12, but it was other reasons back then. When I was 15, i got diagnosed. At my middle school, there was a boy in my class. Obviously i didn’t know at the time but he was autistic too and he also received a late diagnosis. I dont know how our teachers had two autistic pupils in the class and didn’t notice anything! It has always been my mum who has thought I was different; I do have a neurotypical brother she made comparisons with! He was always going out with friends whilst I stayed in, he was much more chatty in social situations, whilst I just wanted to stay with my mum! After my cousin’s diagnosis, my mum finally connected the dots and got me my diagnosis 🙂

    1. rebekahgillian

      29/01/2017 at 2:05 AM

      Yeah! I’m very logical/literally minded, too! Did you get that book that was just pictures and no words, and you were asked to explain what was going on on each page? I felt so awkward! I just kept saying “I don’t know” to each question. Or I’d answer and they’d be like, “What do you think this could imply?” and I was like, “I don’t know?”. A lot of the process made me feel so dumb! I actually went home and cried afterwards.
      Yeah, when I was in camhs (I didn’t mention it in this post because of country-wide differences and stuff), it was for other reasons, too! 🙂
      Oh wow. Teachers/professionals are often the last to notice autistic people. I think it’s easier for parents because we’re comfortable around them and stuff, but teachers only see us in a formal environment (though I did have home tutoring for a while), mostly when we’re masking, and therefore can’t get to know our true selves very well! I’ve said this before, but we’re both so lucky to have supportive parents!

      1. Lia

        29/01/2017 at 2:45 AM

        Yes they showed me pictures and asked me to explain it! They also read a sentence from a book and then asked me questions on it. Like “Dorothy said she was going to the van but went to the park where did Dorothy go” ?? as i am literary it was easy for me. It is a lot harder in the real world though! Yeah the teachers need more training to identify stuff i think! That way less late diagnosed occur 🙂 yeah im so lucky to have my parents

        1. rebekahgillian

          29/01/2017 at 12:55 PM

          I didn’t have the sentence one, but that one asking me to explain things was so difficult! I hated it. They also made me make up a story with five objects. I expected it to be easy because I’m a writer, but I found it so difficult!
          they definitely do! I’d love to go back and educate my teachers on some of the warning signs that were missed in me (and others, generally, which would require research).
          So am I–especially my mum. I’m so grateful for everything she’s done over the years!

          1. Lia

            29/01/2017 at 5:17 PM

            Yeah they asked me to do the story one too! And lots of those IQ-type puzzles with shapes ? yes!! Im grateful for my mum too shes dealt with so much but she still tries v hard to be understanding

          2. rebekahgillian

            29/01/2017 at 5:31 PM

            Yeah! I’m so glad the process is over with now!
            Yeah, mum’s the same with me. My dad doesn’t understand so much, but he tries.

  3. Milla

    30/01/2017 at 1:45 PM

    Wow, I had no idea it could take so long to get such a a diagnosis. Thank you for sharing your experience.

    1. rebekahgillian

      30/01/2017 at 5:42 PM

      I’m not sure how it works in other countries, but in England, the waiting lists are horrendous! Mine was a really quick case, actually; most cases take between one and two years to complete!

  4. Perla

    30/01/2017 at 2:06 PM

    This is quite an educational post, it was nice of you telling others your story. I am sure there will be people who’ll identify with that. Hope you receive the proper care now.

    1. rebekahgillian

      30/01/2017 at 5:43 PM

      Thank you! Unfortunately there isn’t much care around post-diagnosis which sucks, but knowing that I have it is a great relief!

  5. onlydreamcatchers

    30/01/2017 at 4:46 PM

    I can’t say that I know how you feel,but I get that you must be powerful <3

  6. MishyV

    30/01/2017 at 6:19 PM

    Thank you for posting this! I had no idea there’s a diagnosis like this actually and that you can only find out later in life. I hope you’ll keep us posted because this is really important for society to see people like you sharing their experience with us 🙂

    1. rebekahgillian

      30/01/2017 at 7:54 PM

      You can find out earlier, but a lot of people, unfortunately, aren’t getting that! I’ve been writing more and more about autism on my blog now! There are more posts dating to a year back, if you want to check them out? 🙂

  7. guilbertmargot

    30/01/2017 at 8:01 PM

    oh I would have never thought the diagnosis could take so long. That would be very interesting to know how you can overcome your autism. To tell you the truth I am not very well informed about this subject. Thank you for sharing your story with us!
    xo, margot
    http://thepastelproject.com/

    1. rebekahgillian

      30/01/2017 at 8:04 PM

      Yeah. Eight months is actually pretty quick–a lot of people are left waiting far longer! I don’t see being autistic as something to overcome, because it’s a lifelong disability with no cure that I’m learning to live with more and more everyday, and I love having it! It gives me an outlook on life that isn’t the “norm”, and despite the frustrations, I wouldn’t become “normal” for anything. 🙂

  8. jnuna

    30/01/2017 at 11:25 PM

    What a powerful post. It sounds like you’ve been on quite the journey. Thank you so much for sharing your story.

  9. Eloise

    31/01/2017 at 4:27 AM

    I think it’s great that you are writing about this, some things are just not easy and quick to diagnose (I can speak of personal experience on this… I have a rare genetic liver disease!)… I’m glad you finally have an answer and therefore can better understand yourself and how to work with it in life. thanks for sharing!

    1. rebekahgillian

      31/01/2017 at 3:46 PM

      Thank you! Isn’t that true?! It seemed like forever and a day before I received my diagnosis, but it was definitely worth it!

  10. Jodie Marie Dewberry (@alajode)

    31/01/2017 at 2:03 PM

    This is such an incredibly powerful post and you’re so brave for sharing it!

  11. Vanessa

    31/01/2017 at 4:21 PM

    Thank you for sharing your story! This post will inspire a lot of people!!

  12. Sonja Josipovic

    31/01/2017 at 5:27 PM

    Powerful post and you are such a strong person!
    http://www.stylequest.se/

  13. Eliza Armand (@eliza_armand)

    31/01/2017 at 5:42 PM

    Thanks for sharing your story! You’re very strong, never give up!

    Cheers, Eliza | http://www.fashion-confession.com

  14. Esmaeel Akther

    31/01/2017 at 8:33 PM

    This is a moving and powerful post. Thank you!

  15. Michaela Harrison

    31/01/2017 at 10:05 PM

    This is a powerful post, thank you for being strong and sharing your story

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