Learning to Live with Autism
Learning to live with autism is not just a challenge for the person who has the condition but it can also be a considerable challenge for the person’s family and friends.
As a speech and language therapist an important aspect of our role is to be a support for the parents and guardians of children with autism. Understanding the condition is the first step in being able to support a child with autism.
The Guardian shares the story of how novelist David Mitchell looks back on the heartbreak – and joy – of learning that his son had autism……
“So the child psychologist across the desk has just told you that your three-year-old is “presenting behaviour consistent with that of an individual on the autistic spectrum”. You feel trepidation, sure, a foreboding that your life as a parent is going to be much tougher than the one you signed up for, but also a dash of validation. At least you now have a 10-page report to show to friends and relatives who have been insisting that boys are slower than girls, or that late language is to be expected in a bilingual household, or that you were just the same at that age. It’s a relief that your child’s lack of eye contact, speech and interest in picture books now has a reason and a name. You send some generic emails to people who ought to know first containing the words “by the way”, “looks like”, “has autism”, “but don’t worry” and “confirmed what we thought anyway”. The replies come quickly but read awkwardly: condolences are inappropriate in the absence of a corpse, and there aren’t any So Sorry Your Offspring Has Turned Out Autistic e-cards. People send newspaper cuttings about autism, too – about how horse-riding and shamans in Mongolia helped one kid, about a famous writer whose son has autism and is doing fine, about a breakthrough diet based on hemp and acacia berries. The clippings go in the compost.
You read books to learn more – until now, the closest you’ve come to autism is watching Rain Man or reading The Curious Incident of The Dog in the Nighttime. Autism proves to be a sprawling, foggy and inconsistent field. Causes are unknown, though many careers are fuelled by educated guesses. MMR is the elephant in the room, but you’ll get to know a number of people with autism who never had the injection, so you draw your own conclusions, like everyone else – until such time as harder data emerges from the vast control group of MMR refusers’ children created by the scare. Symptoms of autism appear to be numerous. Some are recognisable in your own son, but just as many are not. You learn that luminaries such as Bill Gates have “high-functioning autism”: “low-functioning” people with autism lead less visible lives. You hope for the best.
There’s quite a marketplace for autism treatments, you find. Some sound rational, others quasi-deranged. One claims that autism is caused by allergens entering the bloodstream through a perforated bowel and inhibiting cerebral development. You FedEx a blood sample to a laboratory in York, and quite a long list of prohibited foods comes back, including lamb, kiwi fruit, pineapple, gluten, red meat and dairy products. Your family adopts the regime, and although you feel a little healthier, you see no change in your child. Ditto the benefits from the ionised water you’ve ordered from the US, which a friend passionately recommended. You feel a new pity for the medieval unwell, who limped from one shrine to another, hoping to find the right saint to pray to, when what they really needed was a quantum leap in medical science. Such a leap has not occurred in autism research yet.
Autism therapists enter your life. Some work for local care-providers, some are freelance; some are occupational therapy specialists, some focus on speech and language, some advocate Floortime™ (a play-based treatment), some “applied behaviour analysis”. (rewards and measurements); some are evangelical about one approach, some take a more pragmatic “whatever works, works” approach.
You learn that treatment is called “intervention”, and that while 10-15 hours a week are recommended, your local care-provider has the resources to offer only about 15 hours per year – and, after sickness and staff training, this will become 10 hours. One afternoon, a therapist from the care-provider is so fazed by your kid headbanging the kitchen floor that she flees before the session is over, and you realise you’ll have to pay privately. You don’t begrudge the money – the therapist you find has a horse-whisperer’s gift for teaching children with special needs – but 10 hours a week is going to cost upwards of £10,000 a year. (How much is Eton again?) Some is refundable, if the official criteria for the tutor are satisfied, but for the most part you’re on your own. Therapy during school holidays is not repayable, because the authorities believe autism ceases to exist outside term time.
Things get challenging. Your sleep is broken and stays that way. Kids with autism don’t really do bedtime – they keep going, Duracell bunny-style, until unconsciousness sets in, often after midnight: 3am “parties” are common, where your child wakes up refreshed and jumps on the bed for an hour, laughing and crying. After one rough night you take your kid out for a spin in the car to give your partner a rest – 45 minutes of nonstop screaming later you give up and come home. Worst is the headbanging – against the hard floor, up to a dozen times a day. Your kid’s bruises are earning you dodgy looks at the supermarket checkout. It is suggested that you keep a self-harm diary to identify the triggers, but these seem numerous and obvious: hunger; tiredness; frustration at dead batteries in a toy; a scratched Pingu DVD; not being allowed to play with kitchen knives.
You’re warned against stopping the headbanging by force, in case this reinforces the self-harm by teaching your kid that headbanging = attention + a hug, but you’re also afraid of brain injury and concussion. A wise therapist suggests placing your foot between head and floor, so that the impact is softened. As your feet get tenderised, you recall an influential American psychologist who preached that autism is caused by “refrigerator mothers” not loving their children properly. You hope that Lord Satan has something special planned for that learned gentleman. You envy acquaintances who have hands-on family members living nearby, able and willing to roll up their sleeves and help: like many others, you and your partner are on your own. Self-pity, however, makes you feel wretched and is a rudeness to single parents coping with a child with autism while being forced by the bedroom tax to search for one-bedroom flats.
Your social horizon dwindles. Friends assure you, “Bring him over. It’s fine – our place always looks like a bomb’s hit it” but you know they’ll be less laid-back when a curtain rail gets used as a gym bar and comes down in a shower of plaster. Babysitters, air travel, hotels and B&Bs are off the menu. You are offered respite care, but it feels too much like dumping your four-year-old among minimum-wage strangers in Mid Staffordshire and turn down the offer. Soon after, you read about a teenager with autism who died at a nearby respite facility. He choked to death on a rubber glove and wasn’t found until the morning. You feel a fuzzy anger at autism itself, for denying your kid so many childhood pleasures: making friends, trips to the cinema, birthday parties, a day at a theme park………
…….Your kid turns five. One day, he traces a finger over the VW insignia on your car and remarks “V and W”. A few days later, you hear him sing “Cork 96 FM” – the cheesy jingle of a local radio station, but it is pure music. Soon after, there’s a cup held under your nose and the word, “Juice.” Two weeks later your therapist brings your child into the kitchen to say, “Can I have apple juice, please?”
Life’s still far from Mary Poppins – there’s no dialogue as such, and while many people are tolerant, your partner reports unfriendly vibes from other mothers at the Jumping Beans Preschool Song and Dance Circle. Au revoir, Jumping Beans. The shoe shop lady rolls her eyes in contempt at your child’s meltdown at the foot-measuring stool, and the owner of a hair salon doesn’t hide what she thinks of such a big kid getting freaked out by buzzing clippers. Nonetheless, you are aware of your son growing into who he is. Life gets better in small increments. Your child likes standing on your feet to chop vegetables; baking; reciting long, half-clear chunks of Wes Anderson’s Fantastic Mr Fox; gazing at the sky, fascinated, through the fingers of trees; and leaping with delight at the Archers omnibus theme tune every Sunday. One day your child replaces the name “Dora” with his own name in Dora the Explorer, and gives you a crafty smile to see if you noticed – a first joke. He is entranced by the numbers on the microwave display panel, and counts the stairs in English, Spanish and Japanese. One day you notice he has scored 79,550 points on a tricky iPad game, Doodle Jump. This is 50,000 points higher than the top score achieved by any “neuro-typical” member of the household.
To read more go to: The Guardian
