Journey to an autism diagnosis (Part 2)
Journey to an autism diagnosis (Part 2)
Welcome back to part two of my journey to an autism diagnosis. If you’re wondering where part one was, click here to read that blog post first.
So, in the next part of my story, I’ll be talking about:
- THE psychiatrist appointment
- Misdiagnosed BPD
- Self referring to the local autism service
- Self diagnosis for now
THE psychiatrist appointment
“What I say goes”
I emphasise ‘THE’ because it was the appointment to change all appointments. In November 2020, after 10 months of being persistent with the mental health team, I finally got an appointment with a psychiatrist. I was so nervous because the several I’d had previously went as follows:
Me: “I don’t think I have Borderline Personality Disorder. My autistic counsellor has said she thinks I might be autistic and thinks I would benefit from an assessment.”
Psychiatrist: “Hmm, well it looks like you were diagnosed with BPD in 2017 by me.”
Me: “Yep, that’s right. But I’m not convinced that’s what it is.”
Psychiatrist: “Are you a psychiatrist now?”
Me: “Well, no but…”
Psychiatrist: “From all the evidence it suggests you have BPD. It’s not bipolar and not autism. Google isn’t always right y’know.”
Me: “Right. So you’re not going to refer me to the autism service?”
Psychiatrist: “No, because you’re not autistic.”
Me: “But I’ve collated all this evidence and matched actions throughout my life to the traits.”
Psychiatrist: *sigh* “I’ll take a look and get back to you.”
(Spoiler alert: They never got back to me)
The moment of truth
This appointment was a bit different because of the pandemic so was done online with a different psychiatrist. I logged on and I was physically shaking, the sweat pouring out of me. I felt sick and frustrated and not that optimistic. The doctor was also 15 minutes late which made me panic “Have I got the right day?”, ‘”Have I got the right time?” and *goes searching for the letter to discover it is the right day and time*
When she finally logged on, she was really nice. We chatted casually for a few minutes and then she asked about why I needed to speak to her. It went a bit like this:
Me: “Since I was diagnosed with BPD in 2017, I haven’t felt like that diagnosis fit me. Going through the traits and I don’t fit many of them. An NHS counsellor said I should track my moods on a Bipolar mood scale because she thought I might have Bipolar. I have it here *tries to show her on camera*
Psychiatrist: (after a pause) “Has anyone ever mentioned that you might be autistic?”
Me: (cue unattractive open mouth face) “Um, yes! My counsellor is autistic and said she never agreed with BPD because when she first met me 10 years ago she thought I was autistic. I did try to ask the other psychiatrist but she kept dismissing it.”
Psychiatrist: “Do you know how you feel right now?”
Me: “Not really.”
Psychiatrist: “You seem to be crying. This is going to sound odd, but did you know you were?”
Me: “No I didn’t.”
Psychiatrist: “My opinion is that you’ve been misdiagnosed with BPD instead of being recognised as autistic and sent for an assessment. I’m so sorry this has happened to you.”
Me: “So can you diagnose me now?”
Psychiatrist: “I’m so sorry but I can’t. I’m not qualified to do that but if you refer yourself to the Integrated Autism Service they can do that.”
Me: “OK. Can you refer me please?”
Psychiatrist: “I can’t I’m afraid. It’ll be quicker if you do it. Once again, I’m so sorry and thank you for continuing to persist. You will get there I promise you.”
SUCCESS! After four years and being a pain in the arse to the mental health team I finally got somewhere and I was right all along. At the time it was diagnosed, the psychiatrist asked me if I thought the diagnosis was right. (How should I know?). Apparently, I knew more than I thought.
Trying to question a diagnosis when you have BPD is near impossible. Everyone thinks you’re being dramatic, manipulative and attention seeking (none of which are true). They ignore you and hope you’ll go away and when you end up in A&E after getting so frustrated, they don’t want to help you anyway. Life is tough if you are diagnosed with BPD.
But, although that was progress, there was a long wait to be assessed and having to refer myself was frustrating.
Self referring to the local autism service
My journey to an autism diagnosis is not a straight forward one but at least I’m moving forward. There are many people who aren’t as fortunate. Self referring was interesting. You basically have to think about all the struggles you’ve been through and match them to the traits in order to explain to the service why you need an assessment and how much it’s affecting your life. As with anything I’m interested in, hyperfocus took over. 7 hours and 24 pages later, the referral was complete. I sent it on and awaited the verdict.
It was a success. I’m on the NHS waiting list. I can also access the autism service team who are super helpful and really nice. They’ve been helping me with a few struggles. They also happened to mention that my referral was THE LONGEST FORM THEY’VE EVER HAD SUBMITTED. Yep, proud adult moment.
I felt relieved that I’d been accepted but now I’m impatiently waiting to be assessed. It’s not even that the system is slow. It’s because I’m extremely impatient!
Self diagnosis for now
After submitting the form, then the soul searching began. I read a lot, wrote a lot, joined a lot of communities, talked a lot (as always) and pondered a lot. I yo-yo’d between “I’m definitely autistic” and “You’re so not autistic” for some time. Even now I have those moments. External validation can help so much, knowing there are others out there like you who are going through the same thing, embarking on the same journey and ultimately, losing their way too.
It’s like a maze. You start out excited and optimistic and steam ahead with great confidence. Until you come to the first bend, round the corner and end up back at the start. You try again, getting a little bit further in but now you’re overwhelmed and have totally lost your bearings. “I am really lost?” and “Why did I even bother trying?” come to mind.
But now that you’re in the middle of your journey, you can’t stop. So you persevere. You then meet another person along the way who is also stuck somewhere in the middle. They offer reassurance and say “Oh my gosh, that’s happened to me, I know how you feel and you’re not alone trust me!” You immediately feel better and work together to find your way out of the maze of life, culminating in success and new friendships.
My point is, if you’re self diagnosed, it’s OK. You are not alone either. The amount of lovely people that contact me on Instagram to share their stories is high. However, they feel better knowing they’re not going it alone and if they’re feeling lost, there are people there to guide and reassure them.
Your journey is so important. Your experiences matter. Your gut feelings are normally right. And you are valid.
Sending socially distanced hugs your way,