Foreword -Pendulum Physio here, and I’m over the moon to introduce our very first guest blog. The following paragraphs are written by Jean. She is a mother and a critical thinker. One of her kids is Autistic and I found her blogs (Autism; Practical Magic) to be so refreshingly honest, well-informed, and funny! Honesty is something I have become known for, I have a low tolerance of bullshit and my industry is full of it. Reading Jean’s blogs I reflected on some of the people I treat who are Autistic, and I realised that no matter how straight-to-the-point I try to be I will NEVER have the skills of brutal honesty that some of my autistic patients have.
“How did you get on with those exercises?
I did not get on them or with them.
Did you try them?
No. Those exercises are boring so I don’t want to do them.
Okay no problem! That’s great information, let’s try something different.
Fine but I probably won’t enjoy it”
I love how direct that communication is! I’d take that every day of the week. I’m certainly no expert in Autism, but I’m keen to learn more and I enjoy meeting & treating people with Autism. I try to treat the person, I have no desire to try and treat their Autism – in fact I’m not sure it’s something to be ‘treated’ at all. I do see many false claims from people who claim to treat or cure or prevent Autism. Jean is sharing her thoughts on why parents of Autistic kids make such easy targets for ruthless Quacks.
Why Quack Therapists Target Autism Parents
We live in curious times. We are safe in the knowledge that plague is spread by bacteria, and not witchcraft. We know that soundwaves crackling across the airwaves, and not the cunning work of the devil, transports music to our radios. We rely on doctors, and not witches, to heal illness and injury.
“You can buy a few healing crystals along with your weetabix”
It’s the 21st century. We’ve all been to school. We’re pretty enlightened, and books of healing spells are shelved in a dusty, unused library along with tomes on alchemy, sorcery and mythology. Right? But it seems that despite steady progress in science and critical thinking, that our fascination with all things alternative has done nothing but grow. You can buy a few healing crystals along with your weetabix on a trip to the supermarket. Homeopathic tinctures are displayed with grave credibility next to paracetamol. Aromatherapy oils bewitch us with promises greater than just making your home smell better than a month-old ham sandwich (true story, involving my older son, poor food hygiene, and the use of under his bed as a teenage black hole… I think the third secret of Fatima and the remains of Amelia Earhart could be in there somewhere too).
When our heads know better, and there are acres of evidence discrediting quack remedies, it’s puzzling that we continue to spend our time, energy and not inconsiderable money on them. In a time when ‘miracles’ can be explained with MRI scans and satellite images, we are still drawn to alternative remedies like moths to an expensive, but dishonest, flame. So why do we fall for it?
“I am sleep deprived, anxious and depressed, yet I’ve never been happier”
I have a 14 year old autistic son, who has made my life harder and better than I ever imagined possible. I am sleep deprived, anxious and depressed, yet I’ve never been happier. I have fewer, but better friends. My career is a distant memory, but I get to hang out with the best kids in the world. The cracks in my marriage (which are in every marriage if you stay the course long enough) have been stretched and pounded with relentless force, but have not broken. I am often lonely, exhausted and hopeless but am deeply grateful for the depth of love in my life. I have less money to spend on making myself and my home look like a magazine photoshoot, but I am honest about who I am, and have a home with an endless supply of tea and coffee, if not designer decor. Life is desperately hard and awesomely brilliant.
And some days are more hard than brilliant.
So, if my son is having what I call an “autistic day”, and somebody knocks on my door and says “hey, gimme all your savings, spray bleach around a lava lamp, feed your child nothing but corrugated iron and Goji berries, and I can magic away all the hard stuff”, it’d be hard to restrain myself from dragging them inside, chaining them to the radiator and screaming “do your magic NOW!!!” while tearing off to the nearest ATM. (btw, that ‘crazy’ stuff I just listed isn’t a million miles away from many of the so-called autism therapies I’ve come across, just so you know).
So why, when we know better, do we continue to get sucked in by snake-oil salesman?
I can’t pretend to have all the answers, but I think I’ve come across a few of them over my years of trying to ensure that my son receives the best education and therapies available to him.
First up, alternative therapies are easy. Living with an illness, injury or disability is hard. Taking medication and coping with it’s side effects sucks. Doing the physio, speech therapy, or Applied Behavioural analysis (ABA) is tiresome and slow. Results are rarely rapid or complete. And professional therapists will never massage your tired soul with lies. On the other hand, an alternative therapist will promise quick, easy, expensive cures and will shamelessly lie through their teeth while selling you ionising foot spas to suck the autism out of your child (that’s an actual ‘therapy’). We will always prefer the easy option. We’re human. But, if a therapy sounds too good to be true, it is.
As parents, we have to accept a large amount of responsibility for our child’s progress. We can’t hand our Little Dear to an Occupational Therapist and say “fix him” while we spend an hour having a nice pinot noir in a book shop (my idea of heaven…. although Prince DJ-ing in a corner would make it completely divine). Parents have to get involved, attend the sessions, and do the work. There is no get out of jail free card on this one. As with anything worth achieving in life, whether it’s regaining health, weight loss, fitness, using speech, or learning a skill, we reap what we sow. It takes work, patience and tenacity to achieve the good stuff and as parents we have to accept that responsibility on behalf of our child. The temptation to hand this over to an alternative therapist for a quick fix can be overwhelming, especially when we’re at a low ebb. But they are our kids to nurture and to coax towards achieving their full potential, with the help of teachers and professionals, and nobody else’s. We lean towards quack therapists because we’re tired, and the road is long, but it’s important to recognise this and avoid it.
“your child is still here, after all. But you grieve for hopes, dreams, a normal existence”
Where we’re at in the grieving process makes us especially vulnerable to quackery. When your child is diagnosed with a life-long disability, you grieve hard. It can be difficult for other people to understand the pain and loss you feel, because your child is still here, after all. But you grieve for hopes, dreams, a normal existence, your career, your marriage, friends, holidays, conversations, sleep, money, going to Lidl without a written schedule, trusting your child not to eat glass, no shit smeared on the walls, having a shower, remembering the names of your other children….. that type of stuff. When you’re chest-deep in all that, and somebody waves a shiny something under your nose and promises to make it all better, it’s a test of character not to grab it and hold on for dear life. It’s pretty depressing that there are people in the world who will happily strip the shirt off your back while you’re devastated with grief, but that’s how it is. One of the big reasons that we are drawn to quackery is that we’re heart-broken and we want the pain to go away. Of course, there’s no avoiding grief; we have to go through it, and avoiding it by focusing on bleach enemas or restrictive diets will only delay our acceptance of our child’s condition. This helps no-one except the salesman, but it’s an easy cycle to keep slipping into.
The last reason I want to touch on is marketing. Alternative therapies are huge business, which are not above scaring parents into buying their product in case their kid is missing out. When you’re new to autism, and you’re trying to wrap your head around an entirely new language, meeting therapists you’ve never heard of and trying to separate the grain from the chaff, you’re ripe as a juicy plum for being devoured by hucksters. Everything scares you in the early days. What if I prevent my child being cured because I didn’t invest in a hyperbaric oxygen chamber? How can I live with myself if I don’t suck out the autism-causing toxins with chelation? I don’t deserve children because I’m not feeding them gluten-free, casein-free, hypoallergenic, extra-virgin, cold-pressed fish ears (or something equally ridiculous)? Marketing works by figuring out our fears and poking at them with heartless, pointy sticks, and Autism parents have plenty of fears.
“I love shiny crystals. I give my kids fish oils. I enjoy meditation. But I know none of them will cure autism.”
I think it’s important not to beat ourselves up over being attracted by alternative therapies. I love shiny crystals. I give my kids fish oils. I enjoy meditation. But I know none of them will cure autism.
The best way forward is to read lots, talk lots and listen to the professionals…. and keep the shiny stuff to hang on your Christmas tree.