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The Joy Thief on ADHD, Autism and how we can Increase our Awareness

Chelsea, also known as The Joy Thief, is self-diagnosed ADHD and autistic. The representation of these neurodevelopmental disabilities is still patchy in many areas and our education requires a massive improvement. As a climate activist and neurodiversity advocate, Chelsea is here to share her story.

Hey Chelsea! Do you mind telling us a bit about yourself?

Yeah! So, I live in Sheffield in South Yorkshire at the moment, but I'm from the Midlands. I work in social media, and I used to do a lot of climate activism stuff! I ran a Greenpeace group previously, and then I burnt out so I couldn't do that anymore. I also have ADHD and autism!

On your Instagram (@__thejoythief__) you document your journey with ADHD and Autism. For those who don’t know much about these, could you offer a brief description?

Yes so both ADHD and autism are neurodevelopmental disabilities which means our brains function differently from normal brains. Things that are impacted are things such as communication, organisation, and planning - focus is a big one. And then how you're perceived by other people so if you do have the hyperactive side of ADHD people conceive you as being very hyperactive. Sensory processing is another thing that goes along with that.

What’s it like having both?

I think the thing for me is that when I first started looking at neurodivergence, I knew ADHD was the thing that I related to, and I didn't even think about autism. But there are aspects of ADHD that I noticed. ADHD people do tend to be quite chaotic and don't have very much routine, very impulsive, and I am those things and have been those things a lot more when I was younger. But I also have meltdowns if I don't stick to a routine, so I'm not that impulsive. I was sort of like OK well I’m starting to relate to autism a lot.

I think the thing about having both is this constant push-pull between those symptoms. Typically, autistic people will like routine, and then people with ADHD are more impulsive, so I'm constantly having to manage those two sides of it. If I don't have a routine then I melt down, but if I stick to the routine too much then I'm so bored. I’ll then divert myself from the routine so much that I then have a meltdown. It feels like contradictory symptoms, but I guess the thing is that there are some symptoms that almost work with each other. I think I do get overwhelmed in social situations, but sometimes ADHD sort of takes over and makes it quite chatty.

Image Credit: Sheffield rally for #StopJackdaw - handing out flyers to educate the public on the issue. Taken from @__thejoythief__ Instagram.

Of course everyone has good days and bad days but do you find that, for yourself, that is often amplified?

I don't know really. Because I have both I don't know what it's like to have one or the other. I think sometimes when they are playing off each other that is when it is the hardest for me. I think one of the things that's the hardest is weekends. During the week, most of the time, I get up, have breakfast, I do my work ,we have dinner, we watch TV, the end. And then the weekend I just have all these things that I want to do and I'll get overwhelmed by them and then just be like, okay well I have no routine, I have no structure, and then I just have a meltdown.

Is it quite common for people to have both?

I’m not sure that the studies are there to back it up, but I did read something recently that said the studies that exist estimate between 30 to 80% of people who have autism also have ADHD. So there is scope for quite a big overlap. And then I think the studies for people with ADHD who have autism, the figure is slightly lower. So I think what I was reading was suggesting that if you're autistic you are more likely to have ADHD, but if you have ADHD you're not necessarily likely to have autism. It also could be that people are more likely to get diagnosed with ADHD than autism so there could be a bias involved.

What was the diagnosis process like for you?

It’s been pretty abysmal. I'm still waiting for a medical diagnosis, so I'm self-diagnosed. I first went to the GP for an ADHD referral about 15 months ago now, and they went right OK fine, and it was rejected from the clinic on the basis of not having enough information submitted. When I asked for the referral no one said I needed to submit information with this.

I didn't get notified that the referral was rejected for a whole three months and that the rejection was sat with my GP. I checked in with the GP and was like ‘I've heard nothing from the clinic. Is there an update?’, they were like ‘Oh yeah we've got this letter’ and it was stamped about 3 months prior, and they just hadn't told me! I was really upset that nothing was happening.

I submitted a three-page document to them of reasons why I felt like I had ADHD and they sent that off. A few months later I was sort of coming to the realisation that I might be autistic. I actually spoke to a family member about it, and I said ‘you know I've gone for this ADHD referral’, and they said ‘you know I've thought for a long time that I might be autistic’. Autism and ADHD have genetic components so when they said that I was like oh ok - it was quite validating.

I asked to be referred for autism as well, and it wasn't for 5 months until I heard something back from the neurodevelopmental clinic. They basically received both of my referrals and said that I sent warrants for investigation. They felt that I matched the criteria for the diagnostic process, but the wait list is 2 years, and by this point, it was already 11 months into first being asked to be referred. Now I'm looking at almost a three-year wait.

There's something called Right to Choose which is basically an NHS scheme where, if you can find a programme that has a shorter waitlist, then you can request to be referred there. Luckily my GP just did it straight away so now I'm on the list and I'm hopeful that I'll have the appointments for medical diagnosis in the Spring.

Image Credit: Chelsea after a successful day of zero-waste refilling. Taken from @__thejoythief__ Instagram.

If you could suggest an improvement for the diagnosing process what would it be?

I attend support groups, and I’ve found that GPs aren't very helpful. A lot of the time there are a lot of misdiagnoses such as depression, and anxiety which is what I got diagnosed with for years. GP’s and mental health professionals who aren't necessarily trained to deal with neurodevelopmental issues need to be more educated there. But obviously we also need the funding for those services. Without the funding the waitlists are just going to stay really big so I think that that's essentially what's needed.

Do you find that people are quite dismissive?

I speak about it a lot online. I don't speak about it with friends and family because the first few times that I did there were a couple of people who were like, ‘but we're all the little ADHD’ and I understand why this is problematic, but I also understand that the education isn't there. There's a lot of misinformation and so I understand why they say that but it is quite demoralising. And then having to be explaining why that's wrong when you're learning about all the ways these disabilities impact us was just too much.

I think the most shocking for me was the conversation with my family member because I did expect them to be like ‘oh that's not a real thing’ and then for them to turn round and be say ‘Oh yeah I think I'm that as well’ was quite affirming. There's definitely a lot of stigmas there which means that I don't talk about it with certain people and I think because people don't understand how valid and essential self-diagnosis. If I hadn’t self-diagnosed myself then I would never be in the queue to be medically diagnosed.

What do you think of labelling?

For me, I actually think having a label has helped me. For so long I was labelled depressed and anxious, and I'm sure I have experienced depression and anxiety, but the majority of time this label didn't fit. Now I've got a label where at least the diagnostic criteria feel it fits so for me it feels like a good thing to have that label, and it feels that I finally understand myself in a way that I never did before with other labels. I think I'm sort of indifferent.

Why do think less women, girls and those afab receive less representation?

So sexism exists from the very start of the process. Medical studies are historically mostly male candidates which means that women are missed from the diagnostic criteria. This means that then we are less likely to get diagnosed but then there's also the sexism that comes it. If you're a female presenting a certain way, no one thinks ‘oh you could have ADHD,’ they just wonder why you’re being chatty, why you’re being naughty, stop doing those things.

But I think the thing for me is, at the moment, women have the spotlight because a lot of women are coming forward and saying ‘you know we’re under diagnosed’ and there's an influx of women getting diagnosed. I think actually if we were to look at it we would see that it's not just intersectional issues but probably white people and middle and upper class people are more likely to be diagnosed than people colour and working class of people.

I don't know for sure but when I was growing up I lived on a council estate, my parents are very working class, I had a very thick regional Midlands accident, and when I went to the GP at 12 years old, I was really struggling to cope. Instead of that being a red flag and me being referred to a service, whether that's mental health or neurodevelopmental, they were just like ‘are you going to do this again?,’ and I was so like ‘uh no?’ and then I was just flung back into the council estate to just deal with it.

I don't know for sure if there was a class element there but we were in the wrong postcode, we had the wrong accent, so I feel it did have an impact. Whereas now I live in an area that's historically working class but is being gentrified so there's a lot of middle class there. I appear and am essentially middle class now. I have a good job at home and my accent is very sort of diluted now so you can't really tell that I'm from a working-class area. So it was a lot easier for me to get referred but I feel there are a lot of people who still get missed because they present more working-class or they’re a person of colour and so I think for me the issue isn't necessarily that women are under-diagnosed, I think it's just under-diagnosis is happening across the board.

Image Credit: Details of Chelsea's newsletter can be found through the link in her bio. Image taken from @__thejoythief__ on Instagram

Your name on Instagram and Twitter is ‘the joy thief’ and I’ve seen several of your tweets about reclaiming joy and the joylessness in your culture. What’s the story behind it?

For me, I first went to the GP when I was 12 years old and nothing really happened so I was miserable for a long time. Over half of my life, I was really unhappy, I hated myself and when I self-diagnosed there was this really big shift in. Before diagnosis I thought I was the problem. I was too loud, too bossy, too selfish. After diagnosis, there was this huge relief because I realised I'm not really the problem. The problem is a world that's not built for me and people like me and then with that kind is an influx of joy that I realised I was missing out from and self acceptance and being able to live in the moment a lot more rather than looking back at things.

In true ADHD fashion, I impulsively started a newsletter which I called the joy thief. There wasn't really much of a strategy behind it, I just did it because I had worked in climate activism so I knew about social justice. The aim of that was to talk about intersectional issues from the scope of working-class climate change and capitalism and how they all sort of melt together. The social media handle changed along with the newsletter.

What do you wish more people knew about ADHD and Autism?

I think the two biggest things for me are for people to understand that traits are not static and they're not linear. For example, when I've told people at work like ‘oh I have ADHD and so it would be really great if I could have this accommodation’, they don't really understand that I don't always need that accommodation but when I need it, I need it. They don't understand that one day I might be fine and then another day I might just not be able to deal with something in a way that I previously was able to deal with it. People don't really get that which blows my mind because everyone fluctuates day to day – it’s just a normal part of being human.

I guess it's sort of a similar vein but can be really debilitating. I have whole days being in bed because I've had a shutdown or meltdown but then I've also experienced really intense joy. There are good parts and bad parts.

What advice would you give to those learning about neurodivergence?

I'm still figuring that out. I've said to my work that it would be really helpful if you could go and read these links. I haven't told them I'm autistic [because] I think there's more of a stigma around it. But go and read about them so you understand what it is that I am dealing with because this misconception of ADHD is just hyperactivity and it's not, it's so much more. I think when people understand that it's so much more and they understand all the different ways it can impact you then that's when they’ll start to understand and be more accommodating and so I think for me education is probably the biggest thing.

You can follow Chelsea’s journey on her Instagram as she shares her experiences with and surrounding both ADHD and Autism. The key takeaway from this is that everyone could do a little more to educate themselves about neurodivergence. Whether that be following someone’s documentation, reading up online, or acknowledging that it’s an invisible disability, we can all do a little better!


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