This week a report was released that the media took to by storm. With headlines like ‘Is it really possible for parents to reduce their child’s chance of developing autism?’ thank you Telegraph. Parents of autistic children are furious. Myself included. But the more I have come to digest the details, the BBC probably gives the best report of all newspapers, the more time I have had to reflect on the report.
Autism Cannot Be Cured
The first is the media’s portrayal of the whole situation. We need to stop thinking of autistic people and children as a problem to be cured. It’s not an illness, it cannot be cured. Our world would not be the place it is without autistic people. They are part of the rich tapestry of what makes our world, well, our world. Where would be without Einstein for example? We need autistic people and the world would not be better without them. My oldest son is autistic, if I was given the opportunity to magically take away his autism I would refuse. Because he wouldn’t be him and I love him, all of him, just as he is.
The Media and Parent Shaming
As the awareness of autism has grown, so has the rhetoric around parents of autistic children. They got it wrong somehow. Maybe they ate something they shouldn’t have when they were pregnant, did they get their hair dyed, too stressed, maybe they bottle-fed (the horror!). And don’t even get me started on the ridiculous and false report on vaccines.
What I do know is that people love a bit of parent shaming. It’s easy to look in from the outside. I also know how isolated parents of autistic children often feel. The waiting list and availability of children’s mental health facilities are far too long and too low. The average wait across the UK is about 2-3 years for an autism referral now. A huge time in a child’s development. An awfully long time when you are trying to get help for your child and give them the best start in life that you possibly can. Even if you can afford it, some authorities will not accept a private diagnosis. So that’s not an option. So you wait, worried, struggling and alone. Then more often than not after diagnosis, all you are left with is a report and a list of charities to contact. If your child needs additional support in school, then you have to apply for an EHCP for funding. This can take another 20 weeks on top of the 2/3 years you have already waited. You’re also not guaranteed to be accepted, so maybe you need to go through an appeals process. A lot of autistic children, mine included, do not qualify. It’s painful, it’s stressful and quite frankly it’s not good enough.
This article hit right into this suffering, this worry and fear. The what-ifs, the could I have done it better, have I done wrong by my child. That terrible and unhelpful parent guilt. Let me tell you, we all do our best with the circumstances we’re in. That’s all we can do. Rhetoric and shameful headlines like this are just not helpful.
As I mentioned above, I was enraged when I first read the articles on this report, but we all have to remember that the media love a good clickbait. It makes them money after all. But since then I have had time to think it through. I still think it’s very problematic. I think the words – reduced two-thirds of autism diagnoses – are massively important here. Not cured, reduced diagnosis. My first thought on reading the article was have they taught these children to mask? To simply hide their autistic traits?
But… and bear with me here. What if it’s not about masking or curing. If we take away the deeply troublesome language the media have used, what if the study has found a therapy that helps? What if parental therapy can make the world an easier place for an autistic child? Remember not cured. They can’t be cured, they don’t have an illness, but perhaps more comfortable in things that can be difficult for different reasons I’ve seen how painful an autistic meltdown can be and therapy can make life less painful I’m all behind it. It could be a huge step forward. As a world we don’t stop learning and so we shouldn’t dismiss a study out of hand because it makes us feel uncomfortable. Let’s forget the what if I could have done more. If we had known we would have, and think, what if we could make things better for future generations. Which is why I am open to a follow up of the study, but a follow up is most definitely needed.
What we have to be really careful that we are not just teaching the children to mask. Just because they can function better, does not mean they are not struggling. Let’s not forget the problematic approach of ABA therapy. Autistic people should not have to appear normal to appease the rest of us. Hiding who you truly are is damaging and painful and can lead to complex mental health problems. No, the reality is the rest of the world needs to become more accepting and not the other way around.
My biggest concern with this study is that it reduced the number of autism diagnoses. It didn’t cure anyone. So if these children genuinely are autistic and of course some of the children in the study could not have been, then we’re actually just stopping them accessing additional support that they may need. The study noted that children were normally diagnosed by 3 and it was conducted for 4 years, but I would be very interested to see how this looks when the children are 7/8/9 and even into their teens. My son was not diagnosed until he was 9. So these children could just end up being diagnosed at a later stage in life. What if they are not diagnosed and yet develop awful mental health problems in later life? There is still too many unknowns here for it to be in anyway conclusive.
And so the sweeping, biased, uneducated titles from the media about this report show more about what is wrong in the world in terms of the perception of autism, rather than the truth of the matter. It doesn’t need curing, it doesn’t need parent shaming against people who fight everyday of their lives to help their children. Autism is not a terrible childhood illness we need to vaccinate against. Instead let’s change the rhetoric to inclusivity, acceptance and admiration. How we can help, how we can support, how we can truly achieve this and for this we also need the experience of autistic adults. Let’s ignore these nonsense headlines that only seek to shame, isolate and make papers money and if we can help children in the future, great. But let’s remember we should not strive to make autistic ‘normal’ in the same way we should not subject homosexual people to conversion therapy. Because it’s wrong. Life is diverse, rich and amazing and we should rejoice that we are not all the same.