My son, JJ, is twelve years old, has an autism diagnosis and fits the PDA profile of autism.
He is fat.
As I type the word ‘fat’, I can almost *feel* my readers flinching, narrowing their eyes in sheer discomfort. Because that word was used for years (and still is largely) as a BAD word.
I grew up trying desperately not to be fat.
As a soft and squidgy young teenager, with lots of wobbles, ‘puppy fat’ and dimples, I absolutely HATED my body. And I suspect many of you did, or still do, hate your bodies too.
I started dieting in those years, and again – like many of you reading this – there began my complicated lifelong relationship with food. It’s nothing special, in fact, I think I’m pretty typical of many people.
Until in the last couple of years I started a long and ongoing process of coming to terms with the fact that I’ve effectively been brainwashed by society to think that thin = happiness.
And why? Because not only were the images I saw all around me growing up of thin women being accepted and loved, I also took on board those plentiful negative stereotypes that fat = bad.
Fat people are: lazy, unhealthy, unworthy of love, destined for a lifetime of loneliness and judgement from strangers.
And parents who let their children become fat? Well, before I was a parent I defintely had a view about that, and I think you can probably guess that I didn’t think very highly of them.
But of course, when you think about it, that’s really all just absolute bollocks, isn’t it?
The ‘fat positive’ movement has opened my eyes and offered me different perspectives and for that I’m really grateful.
When JJ started to put on excess weight during lockdown, it started a train of thought in my head that has been wildly out of control and worries me every single day.
It goes like this: his health is suffering, he’s eating too much, people will think I’m a terrible parent, how do I help him…repeat ad infinitum.
And why did this happen? Why did I LET this happen?
According to a 2017 study: “An estimated 46–89% of autistic children have feeding problems, which may include unusual eating patterns, rituals, and food selectivity.”**
Some autistic children suffer from ARFID (avoidant restrictive food intake disorder) which can lead to them being dangerously underweight, and the negative health issues related to that.
But what I haven’t read much about, or heard anyone talking online about, is what happens when your autistic child or young person is overweight.
Like many autistic people, JJ has a very restricted diet and sensory sensitivities mean his list of ‘safe foods’ is fairly limited.
Combine this with anxious eating, dopamine-seeking eating, boredom eating and lack of movement and/or exercise due to (again) anxiety – and what you get is a perfect situation for weight gain.
I won’t bore you all the details of JJ’s referral to the well-meaning community dietician (twice) who wasn’t able to help at all other than suggesting a healthy diet and exercise (no shit, Sherlock).
Safe to say, like so many things on this autism/PDA journey, you’re basically on your own with this one. Forced to become an expert, a therapist, a counsellor – all at the same time as being a parent carer. And not completely losing your marbles whilst you do all this. So, easy-peasy lemon squeezy then, eh?
I’d like to say that we have JJ’s diet and exercise under control, but we don’t. And that’s the truth.
Being autistic is referred to as a ‘dynamic disability’, and I think this helps to explain the care needs of someone like JJ, and also his relationship with food.
Depending on anxiety levels, some days he has low care needs and some days his needs are much higher. On the days he is most anxious, he feels the need to eat more.
For someone with a PDA profile, managing diet and exercise is not as simple as going out for a walk or a swim regularly, and making sure they make some healthy food choices. If only it were that simple. There are a MULTITUDE of different factors affecting JJ’s ability to eat and exercise, and this is not something I am able to control.
JJ isn’t on medication, but that’s another key factor associated in weight-gain with autistic children and young people.
Like everything with low-demand, collaborative parenting, all I can do is try and talk to JJ, explain things to him, problem-solve together and most of all listen to him and help him make healthy choices when he is able.
But do I want him to grow up being as obsessed with his weight as I am? Of course I don’t. So it’s a fine line I tread between gently educating and supporting him with his diet and exercise, and not passing on to him the issues I developed growing up as an ‘overweight’ child and teenager.
We’ve started using on the word ‘fat’ as a descriptor, just as ‘thin’ is, and we’re actively trying to de-stigmatise it and remove those negative connotations.
I tell him all bodies are beautiful. His body is beautiful. And that (controversially) it IS possible to be fat and healthy.
But I often can’t stop thinking people are looking at me and JJ when we’re out. I’ve seen the looks. A petite woman and her overweight son. Why did she LET him get like that?
So that’s where I am. It’s messy, it’s complicated, it’s emotional and it’s HARD.
I’d love to hear your thoughts, especially if this resonates with you and your personal experiences of neurodivergency and weight.
A Boy Less Ordinary 