with an article from James Alexander, neurodivergent Dad of neurodiverse children
**With Will Quince gone from SEND to Health, we will bring you a full update on the implications in the next few days when we’ve mulled it over**
Many parents of neurodiverse children are themselves neurodivergent, whether or not they have a clinical diagnosis. It’s certainly true for me and for Renata. We see it as a massive strength, bringing with it an inbuilt sense of fairness, creative thought (even if sudden change can be hard), and, for us, a determination to help others.
Neurodiverse people may struggle with friendships at school and work, unless/until we find our own ‘tribe’ — other neurodiverse people, whether we realise they are or not. The ones who ‘get’ your jokes, the ones who are fiercely loyal to you, the ones who make you feel that you’re not as weird as the rest of your family tells you you are. We often end up with spouses or partners who are similarly wired, or who, like my non-autistic husband, are exceptionally kind and tolerant about our “charming ways” 😉 and/or, delighted and inspired by the different way we think (We’ve raised two autistic young adults and this month it’s our silver wedding anniversary.)
But this post isn’t about me, although it has brought back memories of my own childhood. The sense of fairness I mentioned extends to getting the right help for our children. Of course, you don’t have to be neurodivergent to fight for your child’s rights, as we well know. But when their condition isn’t obvious to the “untrained” eye, and they are being written off as “naughty”, being bullied, or faced with exclusion, it takes determination and tenacity to stick to your guns that there is a deeper issue going on.
James Alexander, an autistic Dad and parent of autistic children, is here today to tell his story. It may chime with many of you.
The system failed to destroy me, and I’ll protect my autistic children from the same harm inflicted on me. By James Alexander
Trouble maker. Naughty. Stupid. Backwards. So many names, I have been branded them all. And that is just what the adults used to call me. My name is James Alexander, I’m 39 years old; I live with my partner Marie our son, and stepchildren. I have a daughter from a previous relationship. We are all very close, and of the things we share in common, Marie, myself, my son Beau and my daughter Erin, Samuel, my stepson & stepdaughter Bertie all have a diagnosis of autism.
It impacts each of us differently, but we all do our best. Our biggest fight is not with each other but with the local authority to secure the best education for children but not just to plant the seeds now so that they will grow in confidence, ability and wellbeing. I’ve been accused of being a bad parent by people who have no idea of the harsh realities of raising children with special needs and the stress and the emotions that come with it.
As a result, I'm now studying for a law degree and learning with IPSEA LEVEL 1,2.3. SEN law as I'm going to fight for other families and children to help give them the best chance.
An early ADHD diagnosis
As well as being diagnosed with ASD in 2014, I was one of the first children in the UK to be diagnosed with ADHD. There was then little knowledge or experience of my condition. Because of this, I was severely bullied, excluded, and abused by both children and adults, more upsettingly, by people in authority. I’m sharing parts of my life story to hopefully help show the importance of never giving up and keep fighting.
I was admitted to a psychiatric hospital aged 13 because of my aggressive meltdowns that people did not understand. Suffering from anxiety and depression, I have been on medication most of my life. If, as a parent or a person you are struggling, believe me, you are not alone. I know it's easier said than done. Don’t let people who have no idea about raising a disabled child that you’re not doing it right; you know your children better than anyone.
Sensory sensitivities led to harsh treatment
My life is complex to explain; as a child, I was terrified and confused about the world, which manifested in extreme anxiety, constantly worrying about things. I hated loud noises; busy dining halls, the chatter, plates and cutlery noise sent me into emotional distress. The unbearable noise of motorcycles and trains caused me pain. As a young child in the 80s, when you put your fingers in your ears and scream because of these sounds, everyone stared and remarked to my mother that all I needed was a good smack.
“What’s wrong with him?”
At school, other children soon noticed that I would behave differently, clapping my hands and flapping when anxious, which was all the time. This would lead to bullying, starting at primary school and following me through my life. People were not as accepting back then. I was the weirdo, the “backwards” boy with no friends, treated like a vermin, punched, kicked and called names every day at school. I liked to play football on my way home, but without a ball. Pretending that I had one and kick it, then celebrate my goal-scoring ability, but again other children would notice and push me in the dirt and kick me.
I couldn’t sit still and had no concentration, with a feeling in my body that I wanted to run, never sleeping. I was 14 before I finally slept through the night for the first time. Not knowing any different, my parents would always say “sit still”, “stop jumping around”. Of course, as a child, you are unaware of the impact that certain behaviours have on other people.
At around seven years old, I became aggressive at home. This was the result of all the stress of school, being bullied and not understanding my own emotions. I felt like a coiled viper all day at school; then once home I’d explode. This is a behaviour that I'm seeing with my own children.
My heaven - for a while
Being very academically behind at age 11 and having dyslexia, with a reception year reading and writing ability, I'm still very behind today. But then, the LA gave me a statement of SEN and at 13, I was diagnosed with ADHD. I moved to a beautiful special needs school where my life miraculously changed for the better.
I remember my first day being so scared because up until then, almost all interactions that I’d had with people were negative. After the first few days, I noticed that no one was being horrible to me when playing my football game because no one cared. Other kids wanted to play and be my friend. My life changed so much it was nice to be happy at school and it was so unique being in a place that was so accepting of me and willing to help.
It didn’t last. Boys had to leave the school at the age of 12 and I was sent back to mainstream school. Things started to spiral out of control for me emotionally. After trying to take my own life aged 14, I was admitted to a psychiatric hospital where as a teen, I witnessed and heard things that no human beings should ever see. My teens were full of emotional breakdowns, arrests, drugs, and alcohol.
A scarred adult, but my experience can help my children.
By my mid-20s, learning that drugs were not the way and becoming a father, all my focus was on being a great Dad. I still battle my memories every day but as an adult, I understand the importance of never giving up. So many times, I could have given in, but I keep pushing forward.
Now I’m battling my local authority over securing the right help for three of my children. Unfortunately, the battle never stops, the fight continues. My children are not in school at this current time because of the unbelievable way their mainstream schools treated them. We are working to get them into special needs provision and it's a fight that will be won. As parents, we have been accused of being lousy parents, we have battled with schools’ SENCOs, teachers and local authorities. It has just highlighted the need for these people and institutions to be held accountable and I will be taking my local authority to court for their treatment of my children.
As a result of how we have been treated, I’ve now begun a law degree. I know, little me! I’m starting my second year and when the time comes to graduate and qualify as a solicitor, I will help parents and families get the support and help they need to fight back and fight hard. I will have an advantage over most because having SEND myself, I can offer a unique insight into it. I'm going to push for change and hold schools and local authorities to account. I hope this has helped you to stay strong and keep fighting. This is just a little clip into my past and my life.
So please never give up.
- What is “special educational provision” in law? How a case of electromagnetic hypersensitivity may help future appeals
- What influences the emotional wellbeing of young people with severe dyslexic difficulties?
- Falling Through the Cracks: How children with SEND struggle to access early years education
- Using a different lens for neurodivergent children: Don’t treat them as younger, give them the tools to achieve
- How will the new ‘Universal SEND Services’ programme help for learners with SEND?
- Let’s rename bullying for what it is: abuse
- More than one in three disabled pupils experience bullying in mainstream school, plus other concerning SEND stats
- Tips to help a bullied child
- Eliza’s searingly-honest film about teenage mental health and how the right help is hard to find
- Urgent change is needed to stop the institutional culture of parent-carer blaming
- This Education Policy Institute research proves why every teacher MUST be a teacher of SEND
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Don’t miss a thing!
- I’m a Dad with ASD and ADHD. Here’s why I’ll never give up fighting for my neurodiverse children’s educational rights - September 8, 2022
- An Employment Passport to young people with additional needs into paid work - August 23, 2022
- Top tips for introducing a School Dog to help your students - August 5, 2022