Guest Blog by Sarah Wilson-Blackwell
If you haven’t heard the term ‘neurodivergent’ I can only assume you’ve either been hiding out in a southern Spanish cave or you have terrible internet. Regardless, there is much talk about it.
What does neurodivergent mean?
People that are diagnosed as neurodivergent (ND) have a neurological difference. And there are quite a few recognised conditions, for example, autism, attention deficit hyperactivity disorder (ADHD), Tourette’s syndrome and dyslexia fall under the brolly of neurodivergence. The Australian sociologist Judy Singer first used the term neurodiversity in her honours thesis back in the mid-90s.
Warning: I am neurotypical (NT) or what the world laughingly calls ‘normal’. And yes, I’m about to join the ranks of NT types who have the bare-faced cheek to wax lyrical on neurodivergence. But I promise I will try my best not to put my foot in my mouth.
I recently watched a documentary
It wasn’t the usual fare I mindlessly fill my brain with (mostly true crime stuff), this one was the BBC programme Inside Our Autistic Minds.
I’ll confess, up until that point, I hadn’t given neurodiversity all that much thought. I was moved to tears as I watched individuals try to live their lives whilst dealing with the ill-informed expectations of others. The message from viewing the documentary was clear: we have a duty of care towards our fellow humans, humans that are trying to negotiate a world not built for them.
Jess from Jess Lovibond Therapeutic Services (JLTS) offers therapeutic support to children who are neurodivergent – specifically children with autism and ADHD. Jess is also autistic. At the age of thirty-five, she was fairly late getting diagnosed with Asperger’s syndrome. She knows only too well how tough life is for ND folk:
“We’re square pegs in a world full of round holes. I remember as a kid waiting for someone to explain it to me – tell me why I didn’t ‘get it’ in the way everyone else seemed to. What was natural and straightforward to others was a complete mystery to me. By the time I got to secondary school, I’d made a conscious decision to mimic the behaviour of those who seemed to do well with their peers. It didn’t work, of course, but it taught me a hell of a lot about masking and the expectation that I would continue to mask for other peoples’ comfort.”
Knowing she was autistic wasn’t going to change a damn thing about who she was, but it did give her some reassurance:
“When I went for my diagnosis, I was asked ‘why?’. And I said I needed to know if it really was me and not them. There’s some peace in knowing that you really are the weird one. It removes a huge amount of pressure.”
What Jess found really tricky was the constant judgement. It’s something she still has to contend with. She’s been told by others that her diagnosis is incorrect, she doesn’t have autism at all (apparently). Some people judge certain ND traits as rude and uncompromising. And others patronise by proclaiming that neurodiversity is a superpower. Jess does have a superpower though, the ability to make others feel comfortable about her autism.
It’s a boy thing
You’ve probably heard, autism is pretty blokey. And it’s true, boys are much more likely to be diagnosed with autism than girls:
“It has certainly been the case historically that far fewer females have been diagnosed with autism than males, with the ratio standing at approximately one female for every 4 males since the early 1990s.” – Prof Tony Attwood & Dr Michelle Garnett.
It’s different for girls
When girls have autism (or ADHD) it can go unnoticed. Both conditions present differently in the female brain. We raise our girls with different social expectations, so if medical professionals are looking for traits commonly expressed by boys, it’s not much of a stretch to presume many girls are unknowingly living with autism and ADHD.
Theory of mind
Sounds serious, and deep – and it is – but in simple terms ‘theory of mind’ means having the capacity to make assumptions about how other people are feeling.
Autistic folk particularly struggle when it comes to reading other people’s emotions (and intentions). This leads to a false idea that those with autism lack empathy. And because of this, the world sees them as not quite proper humans – like Data from Star Trek.
The British sociologist and psychologist, Dr Damian Milton, takes issue with this assumption (and as someone with autism himself, I don’t bloody blame him). His theory, the ‘double empathy problem’ postures that autistic individuals do indeed have empathy it’s just different from the kind everyone else bangs on about. He also adds that when we fail to accept that difference it demonstrates a lack of empathy towards those with autism.
Neurodivergence is not a mental illness
Autism and ADHD are neurological conditions. The medical field actually calls them disorders (which I won’t because that’s just more neurotypical arrogance). Very often, people who are ND wrestle with their mental health but that’s usually a result of having to function in a society where they don’t fit. Autism, specifically, is a social and communications condition. From the ND perspective, neurotypicals are viewed as dysfunctional – with all their dishonesty and double-talk. And quite frankly, I agree, if only we said what we actually mean!
Raising neurodivergent children
Let’s be honest, kids are a pain in the arse.
An ND kid might seem like the mother of all arse pains. Parents can never know what it’s like to be neurodivergent so they don’t understand their child’s responses. Parents also struggle with accepting that these conditions are forever, there’s no respite for the parent but the same is also true for the child.
Jess believes more should be done within the education system.
She would like to see schools become ‘human-centred’ places of learning rather than ‘outcome-orientated’ places. Educators fall into playing the blame game – the child is viewed as a problem that requires management. She’d also like to see ‘vertical teaching’, where there would be ‘ability and neurotype’ groups instead of year groups. Sadly, there doesn’t seem to be much discussion about how we radically change mainstream education for the benefit of all children.
A shift is also required at home.
Reframing behaviours can help parents understand that their child is not purposely being difficult. The emotions they feel are often born out of the frustration to be understood.
Trauma and neurodivergence
What we identify as traits of these conditions can also be experienced with other issues such as trauma.
Labels can be helpful but sometimes a diagnosis is not the full story. Healing might be the best path for those expressing characteristics widely attributed to ND behaviours. But suggesting healing as an option might be an uncomfortable truth for some parents. That kind of therapy involves painful work, so pinning all your hopes on a label might seem like an easier option for those who are experiencing trauma.
If your child is undiagnosed you need to understand that an assessment is going to take time.
A ten-minute chat with a nurse, ticking boxes, won’t cut it. Assessments usually take all day and they are intense. However, understanding that your child is ND won’t change who they are in relation to you. So be honest about why you want a diagnosis. What do you think will change once you get it? The harsh reality is that there is no magic therapy, no wonder drug that is going to ‘cure’ your loved one. And whilst you desperately want answers, keep in mind that there’s also a child feeling as lost as you are.
JLTS Family Services
Parents can sometimes believe a diagnosis will be the silver bullet they long for, but it rarely is. They are usually at their wit’s end when they decide to contact Jess.
Any breakthroughs that happen through JLTS occur when Jess connects with the child. They are always the focus of care. Jess sees her role as an advocate for ND children and the relationships she nurtures are collaborative. She’s not looking towards an end goal – this process is a journey and one that will hopefully bring positive outcomes.
“You’ve done a brilliant job, Jess, you’ve got us further than anyone else has.”
“You’ve helped me to be mindful of how my feelings and actions impact my son and that’s helped me to be able to speak to him more easily. It’s been really helpful.”
“Jess has helped me to manage the guilt that I feel for my child feeling the way he does and experiencing the emotions that he does. Jess doesn’t only work with the child, and what is presented in front of her, but she also takes time to understand what is going on at home, even if everything seems fine, and how that could be affecting your child.”
A guide: what not to say to someone with ND
“We’re all on the spectrum… we’re all a bit neuro-wotsit.” – Derek the postman.
Oh dear, Derek, minimising an ND condition is pretty offensive. You’re not qualified to comment. Also, you can’t be a bit ND just like you can’t be a bit dead.
“You don’t look autistic.” – Retired neighbour, Gwen.
Well, Gwen, this is awkward. Perhaps you can tell me what autism looks like? Your lack of belief in a diagnosis means nothing – NOTHING!
“ADHD is just a new name for being badly behaved.” – Keith from work.
Crikey, Keith, thanks for your considered insight. I guess we can all go home now, you’ve clearly studied hard for this bullshit.“
So… you’re like Rain Man, right?” – Drunk Paul from The Red Lion.
Paul, you need to stop drinking. Autism is a spectrum and not everyone on it is a savant genius. So please don’t expect someone diagnosed with autism to instantly know how many matches there are in a box.
ND people are more than their diagnosis
Those with ND contribute to society in unique ways to their NT counterparts. They have the power to make us think through things in ways we wouldn’t have considered. It’s about time we got off our high horse and did more to assist – and to celebrate – these individuals.
If you’re struggling with your child and you can see no way through, the JLTS Model Holistic Assessment Framework might just be what you need.
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