My journey to an autism diagnosis – part 1
Many women have asked about my journey to an diagnosis and why I’m self diagnosing for now.
This is part one of the story. In this post, I’ll write about:
- Observing the rules (and how others don’t)
- Doctor Google and the search for answers
- ‘I think I’m autistic doc’ (about how I approached the question of autism)
- Feeling forgotten (how I was treated by the mental health services)
It’s a funny thing self diagnosing. If you’re anything like me, you’ve spent your whole life being told you’re weird or too sensitive or not sensitive enough. That conversations shouldn’t be interrupted and arms shouldn’t be flapped. Hair shouldn’t be twirled and lips shouldn’t be bitten. That no one cares about your vast book collection or that you can remember car number plates off by heart.
You’ve felt like a square peg in a round hole, not quite knowing where you fit and always feeling that there’s something ‘wrong’ with you. But no one understands you.
Rules are meant to be observed
You’ve spent years wondering why ‘rules are meant to be broken’ when they’re rules for a reason. During the pandemic, you’ve been super annoyed with people not following the rules. People walking the wrong way down a supermarket aisle when there are directional arrows on the ground. The non mask wearers coughing next to you in the shop queues. Not wanting to travel too far from home because the lockdown rules set out months ago said you couldn’t leave your area. Your brain feels like a beehive of rules and the confusion when these are broken.
As the world starts opening back up, your anxiety knows no bounds. ‘Freedom Day’ they call it in England but freedom from what? The rules? The pandemic? It makes no sense to you. You’re nervous that going out into the world, people won’t keep their distance from you. That they won’t be wearing masks. That they won’t be washing their hands. That you’ll still be doing all of these things because they’re the rules that should be followed.
As well as all this, you’ve happened upon information about being autistic and it’s struck a chord with you. You’ve seen a friend sharing some information about how autism presents in females and you think ‘wow, that sounds a bit like me’. You get that feeling of relief in your stomach as you click on their Instagram profile and get lost down the rabbit hole of information. You’ve been diagnosed with a mental health condition which hasn’t really ever sat right with you. Doctors have tentatively diagnosed you with a look of uncertainty that you can spot a mile off.
You Google ‘Am I autistic?’ and ‘Online autism test’ to see what presents itself.
You stumble upon the AQ test and decide to give it a go. Out of 50, you score 40, meaning there’s a high chance you could be.
But Google only shows you how it presents in males. But you’re female or AFAB. This doesn’t apply to you.
You start reading that for every three males diagnosed, only one female is diagnosed.
You get into hyperfocus mode with autism becoming your new special interest that you must know everything there is to know about.
You make notes about the traits and which ones you can relate to.
Bloody nora, there’s so many that you identify with.
You sit and deliberate. Sod it, you think, I’m ringing my family doctor.
“I think I might be autistic Doc”
You hate speaking on the phone. It’s awful. You feel weird. And you never know when it’s your turn to speak. You pluck up the courage and are met with the less than polite receptionist.
“Is it an emergency?” she asks abruptly.
Again, deliberation. Is it? Isn’t it? You guess it’s not because you’ve lived your life this far but it hasn’t been easy.
“I think I might be autistic” you mutter.
“OK. So you want the doctor to do what?”
You’re not totally sure so you say “Whatever they normally do. They’re the doctor, not me.”
Huffing and puffing ensues down the phone.
“Fine. The doctor will ring you today.” She hangs up.
You start biting the inside of your cheek and pace up and down the living room. You hope that by doing this, time will go quicker because, let’s face it, you’re not the most patient of people. You decide to sit down in front of your laptop and prepare for the doctor’s call. What seems like minutes later, your phone goes.
Buzz. Buzz. Buzz. Buzz. “Doctors” appears on the screen. Your heart’s in your mouth. You’re not prepared for this.
“Hi, it’s the doctor here. How can I help?”
Your brain is like a motorway of thought cars whizzing past.
“I think I might be autistic and I did the AQ test online and I was diagnosed with BPD but I don’t think I have that and I don’t know what to do and I didn’t know whether you could help or where I could go or who could help.”
Damn it, you think, I did it again. I practically hit the doctor in the face with all of the information.
“I see. So, I can’t diagnose, I also can’t refer. But there is a dedicated autism service in this area that you could self-refer to. I’ll also send an email to the psychiatrist to see if you can meet with her.”
You’re in shock. You weren’t expecting that.
“Th-thank you”, you stutter, “I’m sorry if I wasted your time and an appointment but I really really think this is me and…yeah.”
Verbal diarrhoea AGAIN.
You agree to look into the organisation who carry out the assessments while you wait for a psychiatrist appointment.
Nine months go by and you hear nothing. You start to struggle with the change in routine, the impact of lockdown and need support. You reach out to mental health services to ask for help. You’ve started binge eating and feeling really anxious again. You’re assessed. Two weeks later, you ring them to chase because they said they’d ‘get back to you in a day or two’ but they didn’t. A woman answering the phone rudely says “You won’t qualify for any help because you can deal with this yourself. There are others a lot worse off than you love.”
Ouch. Thanks for that, you think as the tears roll down your face.
The frustration pours out of you hitting the front of your t-shirt as it rolls down. You feel like no one cares. That you’re not struggling as much as others so therefore you’re forgotten. After the devastation comes anger. If this is how she’s speaking to people in times of crisis, it’s not OK.
Sod this, you think, I’m going to complain.
All of this uses energy that you just don’t have.
A complaint is made and apologies are given but nothing more is done.
“Hi, I’m your counsellor for six weeks”
Then, out of nowhere, you get a call from a counsellor who’s been assigned to you for six weeks. You’re surprised but give it a go. Sara has a strong Welsh, gravelly voice and a good sense of humour but more importantly, is determined to help you. Finally, someone is taking you seriously. You chat for the designated amount of weeks after which you are left to go out into the wild and use your new skills to survive a world you just don’t understand. This excitable and enthusiastic lady has also managed to secure a psychiatrist appointment in four months’ time for me so I can ask about my BPD diagnosis. Sara is convinced I don’t have BPD but that I could definitely be autistic.
Progress at last.
Look out for part 2
In the next part of the story, I’ll be talking about:
- The psychiatrist appointment
- Self referring to the local autism service
- Self diagnosis for now
Thank you so much for reading and being supportive as always.