ALS manager, Chris, has notified us of a brilliant article written by the author David Mitchell: Learning to live with my son’s autism. It’s a very long piece but worth a reading, particularly as Mitchell doesn’t spare the horses in recording his, and his son’s, experiences. He also includes extracts from a book by a young Japanese boy that helped him. Here’s an edited extract:
‘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. 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 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 Night-Time. Autism proves to be a sprawling, foggy and inconsistent field. Causes are unknown, though many careers are fuelled by educated guesses. 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. 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.
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.. Worst is the head-banging – against the hard floor, up to a dozen times a day. Your kid’s bruises are earning you dodgy looks at the supermarket checkout. 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.
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.
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. 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.’
I thoroughly recommend reading the complete article which can be found by clicking on the link below.