As mentioned in a couple of my previous blog posts, I have begun exploring the idea that I also have co morbid Autism. I am actually quite happy about this news and willing to embrace it – but because of so many of the indoctrinated ideas I have about how Autism presents in individuals, I have a lot of unlearning to do too. At this stage I am self-diagnosing, but this is because I feel it is very important to find myself under everything before I talk to my doctor about it and pursuing a psychiatric assessment.
My other reasoning for this is I lack the language to articulate my experiences and I only made this self discovery from reading the thousands of comments on my Facebook page where my peers who are ADHD and Autistic are opening up about their lived experiences. And to follow on again from my first point, I have learned many neurotypical traits that I am only now seeing as what is known as camouflage/masking. I am going to share my understanding of these and in myself in this post, because it may be of value to others. But also I am hoping this will help me actually put this into my own words for when I finally talk to a professional about it.
And as much as I trust most medical professionals to get this right, I have a feeling, I might be facing an up hill fight for my own mental health advocacy because I already have a formal ADHD diagnosis. A history of anxiety and depression and that I am also a woman (more on that later).
Firstly I am going to focus on the diagnostic criteria – because as much as I am not for focusing on deficits and that ADHD or Autistic people are broken some how – I still think that the science behind this is important, because of overlaps in different ‘psychiatric disorders’, getting a diagnosis right and being able to do what is right for a persons individual grouping of traits can allow a person access to the right care and medication (especially if it helps give a better quality of every day life ie. My ADHD medication). And also to rule out any other medical issues, something that I also believe is super important not to overlook.
Deficits in social communication and interactions –
I have always said and known this to be true for myself “What is the big secret, everyone else seems to know, that I don’t”. One of the ways that I know I struggle with communication is that I often talk about myself, over share and focus specifically on one interest. I know I have done this from a young age as I was very excitable and could talk endlessly about the thing that interests me the most at the time – and completely miss all the cues that they are disinterested. Again another ADHD thing that overlaps.
I also struggle with small talk in this same way, it’s very hard for me to stick with small talk – it always becomes something more, very quickly. Example:
Shopkeeper: “How about that weather today?”
Me: “Yes it’s been raining a lot lately, especially in this drought we are having it’s good to have it but I hope it doesn’t flood from all the dry earth and fill up my backyard”
I feel very obliged to be matter-of-fact. I could have probably just said “Yea, it’s awful” or something less complicated – I do these kind of weird awkward interactions enough that it is definitely apparent to me – I also find them exhausting. It is literally where my mind goes.
Sometimes I also reply in a way where I cut the conversation off. People are expecting a more detailed reply and I somehow manage to end it with “OK”. Or what I guess is perceived as a thoughtless response. Sometimes I just have no idea how to reply and feel out of my depth and stumble around my words.
Another thing I struggle with is Eye contact. Especially my facial reactions with eye contact. I find it easier to make eye contact with those closest to me. But even then I struggle or am avoidant, I make it look normal to not be making eye contact at that time. I can imagine it makes me look like I am disinterested or don’t care or I am not listening. Sometimes I cannot even hear a person if I am making eye contact because I am solely focusing on the fact I am supposed to be making eye contact and then have no idea what was said.
I have learned that I often don’t respond to things appropriately or find it difficult to give sympathy or even know what to say. I often feel “caught out” in this situation too like I cannot hide my inner thoughts and that it is portrayed on my face, sometimes this is true – I feel like I have learned a few ways to mask this issue for my comfort. But it is still a mystery to me, it’s incredibly uncomfortable, and I am sure it is for most people it can be like this in many conversations – so many in life are very hard to have no matter your neurotype. But in my case I believe it becomes more and more avoidant, which turns into anxiety and a life time of this it has also exacerbated my RSD.
Also my sense of humour is terrible, I either laugh at things I shouldn’t or do not laugh at things I should. Add in the delayed audio processing, I react to things much later than others.
And when it comes to reading people – I struggle to take social cues, I can’t tell unless they verbalise whether they may be angry or sad – and I also read into them and get it wrong, an example: I assume some one is angry when they aren’t even remotely agitated. And because of this I take a lot of things literally too – it’s also in my communication style. I am always matter-of-fact.
A part of the diagnostic criteria I am told revolves around discussion on friendships I have had. I cannot count the amount of times I have mistaken acquaintance for friendship, or was unable to see a persons true intent, what is a true/real friendship and have been taken advantage of as such. Coupled with my ADHD, new people who I become friends with become this big all in, hyper fixate on my new friend, become intense, over share and ultimately have either pushed them away or given them an angle in which I am to be manipulated by. It has been really hurtful to have people not share this same connection and I can imagine for those who I went in full on and then suddenly died off with “interest” is hurtful and confusing for them too, and I have lost friends that way.
At parties and social gatherings I would get quite anxious, and still I need a build up time to prepare for interactions, especially with more neurotypical people. Because of how I have been treated regarding many of my ADHD traits, like talking too much and impulsively blurting out inappropriate things – I also get anxious about being rejected for my ADHDness.
At a party, I also tend to talk to literally everyone there, by the end of a party I would have spoken to everyone, but never truly engaging one on one but if I had it had been a very hyperfixated conversation often on myself or interests – and if we share and interest it’s probably worse.
Behaviour, activities and interests –
Stimming. Restless leg syndrome. I do it – on a neurotypical level – perhaps. From camouflaging/masking I am exploring the idea that I have learned to repress a lot of these urges to appear a certain way and fit in. One thing I have always done and still do is, Toe Walking.
Also known as Idiopathic toe walking is how I have always walked. I have never really met anyone in real life who has done this except for a couple of people who I met through the years with Cerebral palsy. It is the one thing about myself I have never been able to hide – even with countless hours of physiotherapy. I as a 35 year old woman, still walking in a way that if you are neurotypical and did this as a very young child would had grown out of. I always thought/told this as an ingrained behaviour that I needed to fix. And it has been the reason why I have been bullied and something I always knew as myself to be different. It has been one of the hardest aspects of self that I have had to deal with. It made me feel like I was always wrong and messed up some how.
What I noticed when I was diagnosed with ADHD, as much as I am more controlled and able to hide the toe walking – when I cannot and I am subconsciously acting this out, it is in heightened states of stress or concentration. This is how I knew it was at least a form of stimming as often people stim to self-soothe or concentrate. This particular thing, is a massive Autism red flag for me.
Another thing I did that I did grow out of, is head rocking, and I did this all the way up till I was almost 20, basically stopped once I started living with romantic partners or staying the night at friends houses, where I knew, that this was something no one else ever does. It used to be a way I helped myself sleep at night. So I would be laying there, turning my head left to right, right to left, over and over (and creating massive knots in my hair… sorry Mum) to help me sleep.
Other things I do at least vocally, is verbal reactions to things going on around me that is often an “outburst” and definitely from my observations not a neurotypical thing, I would almost describe it as a tic, something that has to come out and if I repress it it feels like a build up some how. It’s a bit hard to explain but I have often been told it is inappropriate and vocalization of my thoughts and external brain dumping is probably a overlap with ADHD also. It is again one of the things that has caused me the most grief in social situations. And in workplaces, sometimes my talking is a form of concentration for me, and is often distracting for others. Something again I have done all my life.
This includes brain dumping to people around me in order to organize my thoughts and action steps.
Aside from physical behaviours and actions, some autistic people dislike changes to routine. This is a hit or miss for me. I think the chaos that my ADHD impulses bring it often leads into a big change and spontaneous decisions, which have been sometimes good and sometimes bad. However when it comes to my everyday life, routine in my house environment and things I normally have control over – especially if it is something I have to build up to action as well – any interference from the outside is actually quite upsetting and it either takes a recovery period for me to get over this, even when I am rational about it – or sometimes it turns into this internal talk of failure and neurotypical expectations of self.
I also feel very out of control and distressed when this happens. Sometimes it can be something very small, like the transition from task to task, it could take the whole day to build myself up to do the dishes for example (this is executive function issue in ADHD also by the way) and if say I am getting stuck into it and a person interrupts that flow. It is over. I can no longer sustain effort to finish the task. It turns into a fiery upset and no real rational reason to be upset with such an interruption, but it is definitely directed at whatever that interruption was. And something I have never really had a word to encompass this but you could just say this is Autism. But it can also look like anxiety from the fear of losing control.
Now on to the thing I probably wanted to share the most while writing this, My special interests. Some of them I have had my whole life, other things I have had what people probably call a “phase”. As much as this is also an ADHD thing, my hyper-fixations, however are often a talking point that I find very hard to stop or not talk about. Someone could be talking about something separate and if it related to my special interest some how I would bring it up and often derail the conversation. I would definitely consider some of my interest not typical but I don’t see the problem in anyone taking interest in any niche as long as it is not harmful to them or others – I actually find it quite awful this is part of the diagnostic criteria at all – however some fixations can be bad or even debilitating or disruptive to every day life, sometimes it is ritualistic in it’s disruption (which is often how OCD is thought of in laymans terms).
My hyper-fixations in my life have included: Drawing. Art. Fine Art. Cartoons/Anime, which branched into Sailor Moon specifically and Shoujo or Josei manga specifically. Japanese culture/history. Astronomy and theoretical physics. Philosophy. Astrology. Wicca. Computer games. Website design. Fanfiction. Fan Art. Horror genre. True crime. Science. Vegetarianism and animal welfare. Goth culture. Rock bands. MUSE. Playing the keyboard. Takashi Murakami and the super flat movement. Reality TV. Collecting cute stuff. Japanese vloggers. Blogging. Drum and Bass. My boyfriends. HTML. SEO. Stickers. Stamp collecting. Crystals , geodes and fossils. Nail art. Gym. Yoga. Boxing. Martial arts. Running. Hiking. Writing. Jackson Pollock. Andy Warhol. Picasso. Varying art movements. Walking insane distances. MEMES. Indie films. Geocaching. Live streams. Photography. Monarch butterflies. Germany. Japanese language. Poetry. Haiku. Old historical buildings. Retro futurism. David lynch films. Alfred Hitchcock. Angel names. Pastel clothing. Disney. Studio Ghibli. Theme parks. Dinosaurs. Coffee making/barista. Gardening. Atheism. Macro-nutrient diets and food tracking. Drawing flowers. Art journaling. Psychology. ADHD. Mental health. Many social justice causes – feminism. (And now probably Autism… yea definitely Autism).
These are the ones that come to mind, some more recent than others. Some I have been interested in forever, some branch off into sub niche interests. But the difference between a neurotypical person and their hobbies and interests, is that I know many random facts about all of these things. Some I would even consider myself a person you could go to to learn about these things. And I am very matter of fact about talking on all of them. I even had some one tell me once that I am “such a fan of things”. You could say I am almost obsessed with some of them. But can I remember where I just put the thing I had in my hand… so coupled with ADHD, my hyper-focus on my hyper-fixations probably looks pretty intense to most people – and definitely weird.
Sensory stuff –
Growing up, I hated having my hair brushed. In fact when my Mum was interviewed about my child hood and talking about my ADHD presentations, one thing she said apart from the fact she thought a lot of my behaviour was “normal” – this stood out for her enough to mention it. I had this issue and still do in a way, I struggle to brush my own hair. I used to hate hairdressers as well but I am mostly over this now. I wouldn’t like it though if I was under stress and someone had to do my hair, I might be more sensitive to that.
Other sensitivities I noticed which seemed to appear more frequently as an issue as I age. Is strong aversions to the smell of perfume or essential oils or anything like that which is an unnatural smell. But this is not all the time, but it is heightened when I am feeling low or stressed.
The same can be said or sounds. As much as sounds are disruptive especially with ADHD, I cant handle certain sounds pitches or volumes. And I am still investigating how this builds up in myself because I don’t think it’s always an instant response, because with many sensory things happening at once it’s not until I am away from it that I have the meltdown. It’s like being over stimulated and over whelmed in the processing of the sensory stimulation after the event. If it is too much I have usually been able to remove myself – or I have noticed it turns into anxious/avoidance behaviour too. I have come to a place in my life where I pretty much know what sets that off, just don’t know when it will.
I also dislike certain things like my hands being wet and getting ‘raisin’ fingers and I struggle to hand wash dishes or clean sometimes. I also dislike gloves so that doesn’t help. I also dislike tags and certain types of materials. There are a few others but you probably get the point. They are all equally uncomfortable things and sometimes can even be painful! cause headaches and even nausea.
I am also sensitive to levels of light for that same reason – another thing that has been more of an issue to me in recent years that I never cared about before.
Child hood –
From my knowledge of self, I know I have always been this way. It is in my school reports. You see it in my lack of friendships. You see it in some of my behaviours. But also ADHD being present I definitely struggled with that more. I think as an adult, when I have had big lows and events happen has the Autism actually flared up enough for me to have noticed it. And hence why I have flown under the radar and even in my own self awareness, until now. Coupled with masking, that I didn’t know I was doing as a coping mechanism until I could correlate that now – being a woman also doesn’t help with having these things actually been seen as something neurological, and has been attributed to being a characterization of how women behave.. or how I thought they are supposed to somehow? Patriarchy anyone?
Adult hood and adulting –
I have my ADHD diagnosis for a reason. But it’s not the only problem I have had, I have had depression and anxiety as a result of living with undiagnosed and untreated ADHD. But when it comes to this part of the diagnostic criteria. Again it wasn’t fully apparent to me that I was struggling with Autism as an adult until I hit walls in my life. It looks a lot like executive dysfunction. And it does look a bit like anxiety. However, it is so disruptive, that I have not worked a real full time job since I was 23 years old.
This has been one of the hardest things and still hard to accept – because I know that I cannot change this about me, or would want to, because being forced to function like neurotypicals do basically says that the autistic presentations in myself (an integral part of my being) is wrong somehow and it’s like being told, not to be me any more. That being myself is bad.
And that is why I am writing this in the first place. Because that is where I am at in my life. I want to be myself and understood, so badly. But I also want the same opportunities as everyone else. And because of the way the world is, it’s not exactly accommodating in most ways to allow me to do that. Some people I imagine, find a way, their special interests, turned into careers and they found that easy because they have that and the passion behind it is a powerful drive which has enabled them to be very good at what they do. There is so many examples of famous people you could probably correlate that to. But for me, I am now realizing, in many ways, as much as I want to be unapologetically myself, it also means admitting that I am disabled.
Which is wrong. And very sad to think and know that I am not the only one. And this needs to change.
I used a very helpful video by a autistic youtuber named Yo Samdy Sam, in order to help me articulate this article. I suggest anyone who is looking into Autism/ADHD dual diagnosis to watch her videos. They have greatly helped me in the short time that I have been watching them.
I am still very fresh to this news so I hope the way I have been able to outline my presentations of Autism makes sense to others and is useful or those who have questions.