Invisible disabilities: Conversation on ADHD and Autism
In their latest piece on invisible disabilities, the Children and Family Health Devon (CFHD) Equality Champions hear from Toby, a parent who is ADHD and autistic. Their daughter is also ADHD and autistic. Toby is gender nonconforming and uses the pronouns they/he. In a conversation with CFHD Participation Worker, Robin Tay, Participation Worker, Toby reflects on their experience both as an ADHD and autistic adult and as a parent of a neurodivergent daughter.
Diagnosis and screening
My autism and ADHD, bring me happiness in my life but also bring me the most struggles. My autism and ADHD were the last things in my life to ever be diagnosed.
I only found out I was autistic because I was in my daughter’s assessment…I went into her assessment and they asked her to make these patterns out of blocks and I was like ‘but it can’t be done’. I thought they were setting her up for failure and I really didn’t like that. I said ‘excuse me, if we could pause because you can’t make that pattern with those blocks’ and the person said ‘yeah you can’ and I said ‘no, you can’t’. Then we got to the face recognition part and I said ‘well, this is quite difficult, isn’t it, really? I mean, there’s happy, sad, angry but who knows about the rest?’ This happened a lot throughout the interview and then at the end the person that was doing her assessment said ‘I think you might need to go and see about yourself…’. It always makes me chuckle.
As somebody who’s been misdiagnosed in the past, yes, accurate diagnosis is really helpful. I’ve spent a lot of time in therapies that are not appropriate for my brain. Wasted years…
…our entire support system in this country is geared towards diagnosis. It’s very hard to get work adjustments, for example, without a diagnosis…
… I think we need to accept that a diagnosis is an extremely privileged thing to be able to access and especially once you’re starting to go private, whether that assessment is £200 or £2000, there is a certain amount of privilege at play there, so yeah, diagnoses are important, but they are steeped in privilege.
I don’t think ADHD and autism are screened for correctly… once you’re diagnosed with upward of four things, to try and untangle that knot is very difficult…going into a psychiatrist’s office and never being asked, for example ‘are the tags in your clothes itchy?’, as simple as that…never so much as one sensory question… never ‘what does that facial expression look like to you?’ or trying to explore my executive functioning or anything…. I have periods of depression, but not what would be considered bipolar …I got diagnosed with something called ultra-rapid cycling cyclothymia but literally all it was, I was getting overstimulated because the music was too loud or there was someone screaming or I was under fluorescent lights … so for me ADHD makes a lot more sense and I actually had to go and find my own diagnosis.
Misunderstanding of neuro-diverse characteristics and behaviours – Stereotypes
I’ve noticed there’s a huge trend on social media saying it is really important to show people the more fun side of ADHD, but I think we are missing the darker side of it. Not everything is ‘oooh a butterfly…oh look, a squirrel…’. There have been times where I’ve lost my keys for the twelfth time that day and I can’t have control over myself. I’ve wanted to punch myself in the head because to lose something 12 times in one day…just one day!
One thing I don’t like, my worst one, is ‘Oh, you’re ADHD and autistic?? You’re nothing like my child!’ – ‘I should hope not! Your child is six years old, that would be a bit weird, wouldn’t it?’.
And I’ve been at parties and someone has said, ‘oh, you two should talk because you’re both autistic’. I mean what annoys me is they’re generally right and then we get on really well…but that’s not the point!
Perceptions of ADHD and autism
I’ve never met an autistic person or an ADHD person that doesn’t have an inherent need for justice and I think that’s what makes us so brilliant…and that’s what makes it really, really sad that working is so difficult for neuro-diverse people and it’s simply because the accommodations that we need are not there.
People are taught that, with somebody like me, the minute you get my pronoun wrong, the minute you call me disabled, the minute you mention me being autistic, I’m going to absolutely explode and run away and write a blog about you and destroy your life over the Internet and it’s just not real.
I’ve spent a large amount of my life around gender nonconforming, autistic, ADHD people, and not once have I ever seen anybody jump down somebody’s throat. What I have seen is people correct incorrect language and then, actually, people get very nasty and defensive because they’re embarrassed.
I think it’s very easy, as somebody in a marginalized community, to get very triggered when people use the wrong language or things like that. That anger is completely understandable, but at the same time, nobody learns from a place of shame. It’s asking a lot of a community that have already been marginalized and hurt for a very long time. So, there are neurotypical people working as hard as they can to get it right and when they make mistakes…well just try not to skirt past it. I think my best piece of advice for people is to just say, ‘I made a big mistake’ like you would if you bumped into somebody, you know, ‘I’m very sorry about that. I’ll try not to do that in the future. Is there anything I can do differently?’
Meltdowns/anger
ADHD is categorised with extreme anger. From the vast amount of people that I’ve met, anger has always been a problem, but very rarely aimed at other people. It’s kind of pushed out into the ether… into the greater universe, like ‘I can’t do this anymore’ type vibe. I’ve never really known that many people with ADHD to find a target with that anger, if that makes sense. I think that’s something we grow out of as well.
I’m a very inward person, a lot of my meltdowns are aimed at me…my anger is aimed at me.
Real life experience of having ADHD and also being autistic
I think the best way I can explain it is… ADHD is having my bedroom in a complete mess even though I’ve cleaned it up three times that day, it’s a big misconception that we just don’t clean.
It’s almost like you’ve got these little woodland nymphs, like cheeky little fairies that follow around after you just kind of destroying everything. So that’s the ADHD…
…but then the autism is my sock drawer, where if my socks aren’t perfectly folded in a certain way, I have a meltdown. So, there’s this absolute kind of executive functioning chaos. I can be extremely spontaneous, but if I don’t have routine for longer than a week and a half everything falls apart because my brain doesn’t tell me what day of the week it is. It’s never Monday, it does it in numbers…it’s either day 1, day 2, day 3. So, if I don’t have things to mark those out it all just becomes a blur.
They’re (autism and ADHD) very similar, but they’re very different and I do think this is why people who are autistic and with ADHD don’t get diagnosed as well. I think that’s a huge part of it …’do you like social interactions?’… that’s such a confusing question for somebody who is multiple neuro-diverse because, some days my ADHD will agree to do certain things, social things, big things. And then, unfortunately, on that day, my autism is actually what’s most prominent. So then ‘autistic me’ has to go and do what hyper spontaneous ADHD me agreed to, it’s very difficult.
Terminology – neurodiversity/disability
I think I use ‘neurodiversity’ when I’m quite comfortable and when I’m talking about the more difficult side I will use the word disability. I know some people don’t like that, but I think a disability is characterized by something that affects your life on a daily basis and makes life more difficult for you…and in my head, my neurodiversity does that. Disability isn’t a dirty word…
Being the parent of an autistic child with ADHD
Sometimes it’s upsetting. It is totally OK to be like ‘this is hard’. This is hard or it wouldn’t be characterized as a disability. But saying ‘they (neuro-diverse children/young people) are hard all the time’…it becomes the entire narrative, especially around the young person…and then we can’t figure out why people with ADHD and autism have higher rates of suicide, have ridiculously low self-esteem. How would you ever have high self-esteem if your school is telling you you’re too chatty, you’re too hyper, you go off topic? I got it a lot in my childhood too.
Education
My child, when she was in mainstream education, she was having 5-6 meltdowns a day, punched herself in the face, hiding underneath the desks. She wouldn’t pick up a pen…literally wouldn’t.
Now, after a ridiculous battle, she’s in a school that suits her needs. There are only six children and it is very demand avoidant. Is she sitting doing her SATS? No, she’s not. Do I care? No, I don’t. But she’s writing now, and not only is she writing, she’s writing happily.
I’ve seen in mainstream education and in life…’We’ll tolerate the ADHD kid hiding under the table, but we’re not going to spend 5 minutes trying to investigate why they’re under the table’.
At 30, I’m now coming to the realization that my education was so turbulent. I loved learning but I left with three GCSEs. I found things difficult to access, but I wasn’t like ‘I’m just not doing any of this’, I did love learning. I got two A stars and I failed all the rest of them. And now, at 30, I’m starting to meet people that say things like ‘I’ve really enjoyed your input. You seem to be…’ for the lack of a better phrase, ‘… quite bright!’ And that is brand new information for me. I didn’t think that was the case for me.