I had this whole little system set up and had this whole plan to make my life a little bit easier and I even wrote a whole post about it and how it was helping, and then I felt the need to write the post about Girlguiding (I only didn't touch on the WI because it's not something I have direct experience of so I didn't want to wade into something and make a load of assumptions, though I understand that they made the same decision for the same reasons) and then over today (Saturday) I have beeb wanting to write an extended version of what's been on my social media stories.
Wes Streeting is launching an enquiry into whether there is over diagnosis of ND and mental health conditions and where there are gaps in the services. Half of that sounds like a really great thing because the simple fact of the matter is that the services are insufficient. Now, I do believe that there is not a quick fix with that, because training any form of medical professional takes time and money, so it's not like there are a bunch of nurses just sitting home that we can say, cool, you now have a job and it's working in an ADHD clinic supervising the medication of hundreds of people, partly because if they've no experience in that sort of clinical setting it's going to take a while to get used to the meds, the side effects, the symptoms that people have and the patients and how they behave, and ADHD is particularly tricky because the drugs that are used to manage symptoms are a controlled substance with a very specific set of rules around them. Another big thing which is becoming more of an issue at the moment is that the rate of underdiagnosis for ADHD predominantly affected women, because ADHD presents differently in girls than boys. The generation that are now realising they have this are of child bearing and child rearing age, so there's a lot of us having babies and breast feeding etc, which adds another layer of complication.
But I'm getting ahead of myself here.
I can't remember if I've previously written about my experience of getting to the point of an ADHD diagnosis so I'm going to put a brief summary of it below. When I was sixteen, I knew I had struggled with spellings for a lot of years, I misread things a lot and it caused confusion and one of the things that made it easier was coloured paper. All of those things are classic dyslexia symptoms, but when I was assessed at sixteen, by a member of staff at my college, I was told I couldn't possibly be dyslexic because I could learn. I think she had foot-in-mouth disease along with the health minister, but I would point out that even if she meant that dyslexic people couldn't learn to make less errors in spelling or other things they struggled with, she was wrong, because it is possible, it's just hard. It's mentally exhausting trying to do it with no support.
When I was twenty I was really struggling at university, and I made the decision to repeat a year because it was the best thing for me by the point that I realised how much I was struggling. I was diagnosed with Generalised Anxiety Disorder, given medication and therapy and CBT and things got a little better, but there was always this undercurrent of this is making things easier, but it's still not right.
I was twenty five when I was assessed for bipolar disorder, mainly in connection with the cycling moods and struggles with depression that I was still experiencing even when my doctors had tried a lot of different medications with me. I was told it definitely wasn't bipolar, and was relieved, but still knew that there was something and it seemed like no one wanted to help me find out what that was.
I was about twenty eight when I spoke to a GP and said I think I'm autistic, and the doctor told me I couldn't be because I can make eye contact and hold a conversation. It took me a couple of months to go back and see another doctor, and say I know that that's a perspective, but I think it's wrong and I still think I might be autistic. And he thankfully was a lot more informed about ND conditions, said that was a load of rubbish but also said he thought that the issues I had were less to do with autism and more to do with ADHD. At the time, I was so in the dark about ADHD, so I spent the next few months whilst I was waiting, and waiting, and waiting, and waiting some more, learning about what it was, what it meant, how people dealt with symptoms and honestly, it was like a lightbulb coming on and I could see, because things just made sense! I was really lucky because, when I had been on the waiting list for about nine months, and was told that I was likely to be waiting another nine months before I was seen for an assessment, HR at my workplace paid for me to have an assessment, where they told me I did have traits of autism, dyslexia and dyspraxia, but I also definitely had ADHD, and honestly, it was one of the most difficult experiences of my life, but also one of the best.
Now that I'm pregnant and under the perinatal mental health team (I just tried to call them perimental natal team and I'm not sure if that's an ND thing or a baby brain thing) the doctor has said whilst I don't have a formal diagnosis for autism, they're going to put everything in place for me as though I do, because it's clear that that is the case, and again, it explains a lot, but I will admit that conversation, though not a formal diagnosis, didn't hit me anything like as hard as the ADHD did, but I guess that's because I've known I was somewhere on that ND spectrum for a while and that essentially, the traits you have of each bit is kind of decided but using a sawn off shotgun to fire buckshot at said spectrum and see where the holes get punched. (I normally just call it the sh*t pick and mix, but either works.)
I know that I am really, really lucky because my workplace were able to cut the time I was waiting for diagnosis significantly by paying to have that done privately, and I'm not even one of the unlucky ones who is in one of the higher waiting time areas. Some clinics have so many referrals to get through that their waiting lists for first appointments and diagnoses are around the eight year mark. Whether you're in education - be it primary, secondary or higher education - or a workplace or whatever you are doing with your life, the likelihood is that referral has not been made on a whim. These referrals are made because people are genuinely struggling, and the majority of people aren't reaching out for that diagnosis so they can be signed off, or 'written off' as the minister said, but so that they can try and figure themselves out and understand themselves better. It's all well and good having a market full of products which are there to offer something to people with anxiety or neurodiversities, but it feels like self-prescribing in a way to get these things without first having a diagnosis. Also, products like compression hoodies and blankets, fidget spinners and all that sort of thing can only do so much to help people with their issues. I needed help with mornings, and coffee only does so much.
There are some people who think there is too much focus on the label, but sometimes 'labels' are important. Many people waiting for autism diagnoses worry that they're not going to be diagnosed and that actually, they're just blunt AHs. I worried that I wasn't going to be diagnosed with ADHD and it was more that I couldn't shut up because I was trying to cover up how boring I am. Those intrusive thoughts are really damaging, and the 'label' is just an acknowledgement of things being a little bit different in your head to the vast majority of people's, and it's an acknowledgement that the way that the world is structured isn't geared towards you exactly. Knowing that is powerful, because it gives you the ability to understand what can be different, what can feel different and potentially why certain things might be uncomfortable, but it also gives you a vocabulary to speak about that with other people and try and make things better.
For me, despite the fact that I got so much better on medication, and then got so much worse when I had to come off of meds to avoid the risks to my little guy, I still feel a sense of imposter syndrome with the ADHD and I still struggle to battle against it at times in ways that are exhausting and frustrating and down right tedious. This is also in spite of the fact that I have a wonderfully supportive partner that does what he can to help me, even when it means me waking him up and asking if he's mad at me for something I did that he's already forgotten about but I've held onto for hours or days or weeks at a time. Pregnancy hormones and ADHD has been something else entirely as well, and without a diagnosis, without medication and without the right support from the mental health team, I don't know how I would have got through it, or how we would have got through it.
I know the minister has now said that he misspoke when he started talking about this issue, and the inquiry is, in part, to look to see if over diagnosis is a problem, but I don't know if he realises how damaging that in itself is. The narrative around neurodiversity and the conversations some people have are still often not positive. People say some really awful things trying to be nice and people say really awful things trying to be awful. People weaponise autism for their own agendas, like being against vaccines, and whilst they might not say it in those terms there are some antivaxxers that will go so far as to say they would rather have a dead kid than an autistic kid. Some people say everyone is a bit autistic or everyone's a bit *insert neurodiversity here* as to why there doesn't need to be specific diagnoses for things like dyspraxia, dyscalcular etc and some people will see something like fidget spinners and decide they need one for their kid, too, and they shouldn't only be for the kids with a diagnosis or whatever. Where these things are scarce, it annoys me as much as people using diabetes drugs to be able to lose weight, because need should come before want. If there was an abundance of everything and something makes you feel better or you enjoy it, cool, but otherwise, leave it alone unless it is a need.
We are still battling with the language around autism, particularly to do with high and low functioning and the use of the term Asperges', and in ADHD there are still people using the term ADD even though that is now outdated, too. People may think this only matters inside of a clinic setting, but it doesn't, and I would argue it matters much more outside of the clinical setting. ADD was particularly applied to women and girls because the hyperactivity is primarily internal (until I start Tigger bouncing through sheer excitement or anger, but that's not the point) and less on display. It's things like overthinking and anxiety etc as opposed to a lowered impulse control, though lowered impulse control is still a factor, but it again presents differently. Low and high functioning seems to ascribe a value to people, which is gross, but also commonly refers only to the person's capacity to verbally communicate with other people. Someone can hold down a job, be able to take care of themselves independently and have good emotional control etc, but because they're none verbal or have limited verbal communication skills, they're considered low functioning. Similarly, you can have university professors that can't iron their own shirts or remember to feed themselves, but because they can hold a conversation - as long as it's about a subject they're interested in - and they're intelligent, they're considered "high functioning". And Asperger was a literal Nazi.
I really hope that this inquiry doesn't start to feel like a witch hunt, but if they're looking for evidence of overdiagnosis, it does feel worrying and the rhetoric around the inquiry already feels quite worrying. People "other" that which they don't know or don't understand and that's something that happens a lot to ND people, and my worry is that this is going to do the same thing on a bigger scale. I know that a lot of people are going to see it as confirmation of their own biases and there's little that can be done about that, but it is concerning and it is upsetting.
I was going to put this blog to go out on Monday and then rejig everything for next week, but it's past one in the morning and I'm actually tired so I'm just putting it out now so I can post the link to it, and barring anything else "exciting" happening, there's a schedule for three blogs to be published this week at lunchtime on Monday, Wednesday and Friday.
