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Supporting the Forgotten Autistic ADHDers

As part of National Inclusion Week 2022, Sinéad Mallinson explains how autistic ADHDers frequently present in ways very far from what most believe to be “typical” of autism or ADHD. This can lead to them being overlooked and lacking support in many settings, including at home and in the classroom.

At 31 years old, in the past four weeks alone, I have had no fewer than six conversations centring on the following themes: “Your autism obviously doesn’t affect you that badly”, “You’re clearly very high functioning”, “You don’t look autistic”. Although I know no-one intended harm or distress ,and in fact were trying to put a positive spin on my autism, such comments are harmful and unnecessary.

To look at my life from a distance, I am a white, cis-gender woman who finished formal education in a mainstream school. I have maintained employment since I was 16 and have built a successful career as an IT trainer. I have a home, a partner and a pet. I have friends and good relationships with those around me. I am well liked and pursue passions and hobbies. None of this precludes that I am an autistic ADHDer, but most people think otherwise.

Who am I, and how did I first discover who I am?

I was raised in Devon by my mum, and I have a brother who is three years younger than me. In 2020 I fled domestic abuse by an intimate partner. I was first alerted to the possibility of me having ADHD by my domestic violence support worker, who suggested I pursue a diagnosis. This started my neurodiversity research journey which highlighted that, yes, ADHD is a defining part of me, but not the whole story by far. Some of my experiences didn’t fit the endless lists of experiences and symptoms attributed to ADHD. My younger brother was diagnosed as autistic age 14 and between the two of us we most definitely demonstrate the diversity of the autistic spectrum. Throughout my diagnosis journey we have now also confirmed it is likely my mother, maternal auntie and maternal grandmother also have ADHD and are autistic.

I was formally diagnosed in July 2022 via Right to Choose with Psychiatry-UK as having Combined Type ADHD. I am scheduled to be assessed for autism via Psychiatry-UK in January 2023 following ADHD medication titration.

As I sit here and reflect on my early experiences with autism and ADHD, so much of my childhood now makes sense. It caused a bubble of emotions between me and my mother when we discovered the truth as she felt sadness that she hadn’t realised that how I am is because I am autistic and have ADHD. However, as a single parent with a diagnosed autistic child who presented in the way we all stereotypically view autism–he was a boy, he was young, he had outbursts, didn’t smile and demonstrated a lack of emotional control–why would she look over at her older daughter–who was quiet, overly empathetic and intelligent–and think that there was anything to be diagnosed?

Now I know that the first time I wanted to fake being sick to get out of school was during swimming lessons, which were my idea of a sensory nightmare: soggy and unclean floors, fluorescent lights, echoing children’s screams and the dreaded orange footbath to this day make my skin crawl. It was a recurrent theme, me being vaguely “unwell”. The reality? I couldn’t face so many of the sensations my friends took in their stride.

I had friends and got invited to birthday parties and sleepovers, however I never successfully finished a single one. I was the first to leave birthday parties, and sleepovers always had my mum driving in the middle of the night to collect me because I “felt sick” or “had a headache”.

During school holidays I would lie awake as the new school term or, worse, a brand-new school loomed, inventing illnesses so I didn’t have to go and ways I could break a bone to be absent.

Now for the interesting part: during the autism assessment process, someone close to the autistic person has to complete an informant report outlining their view of your experiences. My mum completed my informant report and so many boxes had the following phrases: “Sinéad just got on with things and didn’t complain” and “Sinéad just took things in her stride”. These two phrases sum up a lifetime of mental health issues. I hid it. I hid every single thought, worry, stomach-gnawing spiral of doom and just “got on with it”.

Even before school, there were hints that I was different. I could speak in full, coherent, logical sentences by the time I was 18 months old to the point I confused a health visitor who thought she had come to the wrong home as she thought I was a very small five-year-old. It wasn’t taught, my mother wasn’t training me to be a linguistic genius, I just could and so could she from that age. I was then always described as exceptionally gifted when it came to language. I also exclusively walked on my tiptoes from an early age, which is now known to be an early indicator of autism. I devoured books from a young age, abandoned games with peers and toys to sit alone and read endlessly, my earliest known hyper-fixation. I was also always the child who was “very grown up for her age”, that is because at any event where I was given the choice between playing with other kids and sitting listening to grown-ups talk, I was there watching adults, listening, observing and, more importantly, absorbing how they spoke and their mannerisms, because none of that came naturally to me.

Identification and support

Now I have the magic wand–not for me, I can’t change how my story played out–but now as an adult I have the chance to educate others about how schools, parents and those who care for children can best support the forgotten autistic ADHDer’s. The ones who are quiet, always follow the rules to the point they compulsively can’t stray from them; the ones who internalise all their experiences; the child sitting with the grown-ups rather than playing with the kids.

My number one piece of advice is to research and read. Ignore the outdated and sexist studies of the mid-1900s, which only focused on white, middle-class young boys, and look at the diverse range of research currently being undertaken and particularly focusing on how autism and ADHD affect women, AFAB and Non-Binary people as well as ethnic minorities. If you think autism is small boys endlessly obsessing about trains, then of course you will never be able to see or support someone like me. However, if you understand that a compulsive inability to deviate from rules, early talking abilities and walking on tiptoes are all early signs of autism then you stand a chance of offering real support.

“Neurodiverse children deserve to always know that they are different, but not less.”

Once you have identified a neurodiversity, the support is in allowing that child to be their own advocate and amplifying their voice; they are going to need it more than most in the future.

For example, if a student appears to excel at some subjects and tasks but experience anxiety, distress or lack of interest in areas they can’t immediately master, I suggest reviewing whether one to one support is needed as that was the only way I found I could scrape through such subjects. My brain was never going to allow me to be a whizz at maths but with one to one in place at support throughout school I ceased having panic attacks at the mere thought of a maths class and, despite still failing my GCSE, I did eventually go on to pass a functional maths course at college.

I, more than most adults, have to say, “No, I cannot (or I will not) do that”, and it has been hard being riddled with anxiety from not being supported or diagnosed at a young age. I want children in the future to be seen, understood, believed and their voices to be heard and for them to feel confident when asserting for their own accommodations. Neurodiverse children deserve to always know that they are different, but not less.

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