Have you ever wondered what life is like for a child with ADHD? To mark the launch of a new book called Stories That Never Stand Still – a book for people with ADHD, created by people with ADHD – I caught up with 12 year old Marcus Wilton who contributed to the post to find out.
Marcus started speaking at conferences and schools three years ago to raise positive awareness and provide a young person’s perspective on living with neurodevelopment conditions. His aim, despite his own difficult start to life, is to reach out to as many of those children and young people who, like him, have brains that are wired differently, encouraging them to focus on the good aspects of being different instead of the negative side that is more often than not portrayed. Marcus is a Young Ambassador for the ADHD Foundation and recently won a National Award: “The Genius Within” – ‘Outstanding Achievement” in recognition of his work.
Can you share a bit about how your ADHD journey began?
I’m 3rd Generation ADHD, my Grandma is ADHD, my Dad and my Mum are and now me, so as we now know it can be genetic I probably didn’t stand a chance! I was always hyper – never slept, got into all kinds of trouble like using draws to reach things by pulling them out just enough to use as steps. I was thinking out of the box at 18 months old!
As things progressed, what were you experiencing in your day to day life?
I just remember being shouted at all the time! I have some memories of being in nursery around the age of three and having to sit on my own sometimes or not being allowed to play with other children. I know now I was excluded from two nurseries before I even started school because of my behaviour, so I think I was always different and always felt different. Usually, doctors don’t like to diagnose ADHD until you are six because of the medication. Apparently I was six on the Tuesday and diagnosed on the Wednesday.
How did you feel having ADHD affected things at school?
It was when I started school at four that things really started to affect me. I didn’t cope mixing with all the other kids in Reception class. It was far too busy. I was expected to sit still, concentrate, listening, not shout out, not run around – just everything I found hard to do.
I found it hard to follow instructions so got into to trouble all the time. I took my frustration out on other children and hit out sometimes because back then I didn’t know how else to deal with my frustration and anger. I was put on a part-time timetable and only allowed in school in the mornings. I felt so isolated and different again. No one else had to go home at lunchtime.
In year 1 I had a teacher that didn’t believe ADHD existed so gave me a really tough time, always yelling at me, I just knew she didn’t like me. She made no allowances despite information from my Grandma and the doctors and nurses who were looking after me and knew a lot about ADHD.
I remember being called a “naughty boy” all the time. There was one time that has stayed with me and a moment that affected me a lot and still does. I had said to this particular teacher as I was going into school one morning that I was going to try really hard that day to be good.
In front of the whole class and their parents, she said “I’ll believe that when I see it Marcus, you’ll never amount to anything”. That has stayed with me, I was six but remember feeling horrible, sad, angry and just wanting to run away.
It got much worse as I reached year 4. I became more aware that I didn’t really fit in, I found it hard to make and keep friends, no one wants to play with the “naughty, aggressive” boy who was always in trouble. I was unable to work in the classroom with the other children, it was too noisy, too busy, too distracting. I was constantly told, “Marcus you’re bright…just get on with your work” …but I couldn’t.
Grandma was in school constantly trying to help me and the teachers but eventually, I started to get excluded. It was about this time I started to hurt myself by banging my head, punching myself and cutting myself in school with bits of sharp plastic.
I was referred to CAHMS (Child & Adolescent Mental Health Service) by school, who diagnosed High Functioning Autism and PDA (Demand Avoidance) and Emotional & Mental Health Difficulties. It was at this point aged 9 that I was permanently excluded and Grandma found me a school where all the kids were like me so they understood how to support me.
Did you often feel misunderstood and if so how?
In the beginning when I was really little I didn’t know any different but as I got older I realised how much the really bad times I’d been through like being locked in my bedroom, having an unsettled home life, excluded from nursery and then school had affected me.
I blamed myself and still do sometimes but understand a bit better now that I was very misunderstood and let down by a lot of people in my life at that time. Having ADHD and Autism means that my brain is wired differently and a lot of the time I have no control over my emotions and how I behave sometimes. It’s like my brain is running constantly at 100 miles an hour with a 100 different ideas and thoughts in my head at any one time so I can’t pick out the one thing people want or ask me to do.
Because of this I have to learn a different way and needed people around me who understand that and could support me. I don’t think a lot of people in my very early life understood and this made me more angry and frustrated and left me thinking I was stupid and just plain naughty. Although I came across as confident I know now that deep down my behaviours were probably due to anxiety.
How did things change once you got into senior school?
Fortunately, I didn’t have to move to a different school when I went into High School , just from Lower School to Upper School as it’s a specialised provision that goes from year 4/5 right through. They even have a Sixth Form so I can stay there until I’m 19 if I need to. The classes are still very small which means I get the one-to-one support I need to be able to stay in my lessons most of the time, and concentrate better which means I’m making progress and learning.
The part that was hard was having different teachers for each subject and moving rooms all the time. I hate change so this made me anxious. Also, the amount and level of work increased, I found I was expected to focus more and work harder. I am still finding this difficult and often have meltdowns but I know I have the support now. I can’t say the same for those children who are in mainstream High School as I know a lot of kids with ADHD fail in year 7 due to the anxiety of moving teachers and classrooms.
What are some of the common things you hear/are told growing up with ADHD?
IN THE EARLY DAYS IN WAS VERY MUCH:-
- You are just naughty
- You’ll never amount to anything
- Stop being the class clown
- You are bright, just get on with it
- Keep still
- Stop shouting
- Stop interrupting
- You are being rude
- You are on detention
- Why don’t you listen?
- Why do you behave like this?
- You’ll end up in prison
- You are unorganised
- What do you mean you can’t find your shoes?
- You don’t care about anyone except yourself
AFTER I FOUND MY SUPERPOWERS:-
- You are amazing
- You inspire others
- You are so clever
- How do you stand up in front of all those people and talk about ADHD/ASD
- Well done
- I can’t believe the change in you
- You will go far
- You are funny
- You have a great personality
- You are caring
- You are committed
- You are informed
- You are on a mission
Don’t get me wrong…I’m still loud, silly sometimes, still find it hard to sit still and focus but I’m happier.
How did things change once you received a diagnosis?
Not a lot changed at first really, because unless people understand ADHD and accept it, nothing will change. At the time I was supposedly the only kid in my school with ADHD, others just weren’t on the radar like me, so it wasn’t a priority for teachers.
I also started to take medication which is supposed to help to reduce the symptoms of ADHD like impulsivity, concentration and hyperactivity, but it took a while to find the right medication and the right dose. Once we got that right it definitely helped. It’s not a magic wand and only helps with the ADHD not the ASD.
I suppose with a diagnosis also came the right to be supported in school, so staff went on training and different programmes were put in place. Eventually, in mainstream Primary school, I had one-to-one support to help me stay focused on my work.
Even with all the help I eventually got it wasn’t enough for me to stay in mainstream education, so it only changed for me when I went to a special school where the classes were smaller and teachers were trained to support children like me.
The whole school is geared towards supporting kids like me. There are individual timetables, therapy sessions, chill out rooms, sensory areas. The lighting and classrooms are designed around sensory needs. Unfortunately, not everyone with ADHD is as lucky as me and not everyone with ADHD will need this level of support, it’s mainstream provisions that need to be better for kids who have ADHD.
How hard is it growing up with ADHD?
It’s been tough growing up with ADHD because until you find your own way and are supported in finding the things you are good at it leaves you feeling that your difference is all negative. A lot of people think kids with ADHD aren’t clever. Most of us are really bright, but all kids with ADHD/ASD have a superpower, are great at art, music, sport, computers or drama. We just have to find what it is. ADHD affects our thinking skills so we make the wrong decisions sometimes and that makes people think we are stupid.
What above all things do children growing up with ADHD need from those around them?
- Help with organisation
- The right support
- Someone who believes in them
What would you like to say to my readers who may have children or loved ones in their life with ADHD?
It takes a whole family to support a child with ADHD. Try to understand that when they are being difficult that it doesn’t mean they don’t love you. It’s the only way sometimes they can express how unhappy or anxious they are. Also, when they say they are sorry, they really mean it even though they may do the same thing again half an hour later. Love them for who they are inside, not how they sometimes act on the outside.
Anything else you’d like to add?
Neurodiversity is about inclusion and equality – lots of us kids underachieve in school, no because we are not intelligent or gifted but because our minds work differently. There are lots of famous people in history with ADHD, who were gifted in different ways like Leonardo da Vinci and these days loads of musicians, footballers, actors with ADHD/ASD who are really successful.
I want every young person to be understood and not judged or excluded because they are different, and to find their inner superpower too.
I was judged because I was different which is why I now I speak at conferences, schools and other events delivering a positive message to young people encouraging them to focus on the good aspects of being different instead of the negatives. To run with the talents their differences often bring.
They shouldn’t be defined by the labels that stick – “MAD, BAD or SAD” like I was. I refuse to see my ADHD and ASD as a negative when it gives me the opportunity to do what I do. I have achieved so much this year, a BCYA, National “Genius of the year Award” and The Guardian “Child of the Year”. If I can do it anyone can.
All kids with ADHD/ASD are awesome, we just need to see the child, the human being – not the disability. We need to remind everyone that being kind, hardworking, helpful and generous are the most important kinds of ability and tell every young person with a learning difference that ‘I CAN IS MORE IMPORTANT THAN IQ’.
Read Marcus’ two page spread from the book below:
and download Stories That Never Stand Still for free here.
I think you’ll agree that was a fascinating insight into what life is like for a child with ADHD. Do you know somebody growing up with ADHD? or perhaps you’ve found this because your own child has ADHD. Do share in a comment below.