It has to be every parent’s worst nightmare to have a child born with a disability. The children’s parties you were planning? Forget them. Those kick-a-bouts in the park? Not going to happen. Aspirations that your child might be a doctor or a lawyer? Nothing more then pipe dreams. Your horizons are likely to be hugely diminished as you face an emotional, tiring, interminable grind with very little reward. No matter how much love you have for that child there must always be a part of you thinking “Why me?”
Louis Theroux’s latest documentary Extreme Love: Autism is not his usual jokey take on life on the margins of society. The emotion it elicits from the viewer is predominantly one of sympathy. He takes a behind the scenes look at the human impact of a neurological disorder that affects 1 in a 100 people but has baffled doctors who have no clue as to its cause or cure.
In his traditional American stomping ground of New Jersey Louis spends time with a few families associated with the pioneering DLC School whose aim is to provide basic life skills in order to integrate kids into the mainstream. At times the place does resemble One Flew Over The Cuckoos Nest with kids freaking out and attacking staff who do an incredibly difficult and challenging job with pupils that are often unable to express themselves in a normal way. Autistic children normally find most social interaction extremely difficult, as Louis quickly learns when he is routinely blanked by a number of kids in the programme.
One such child is Marcelo, who will fly into hysterics when he does not get his way or if his routine is changed. Just watching him regress into toddler-mode in the back of the car when his mum fails to stop at the supermarket is a draining experience. Later Marcelo refuses to get his hair cut, goes ballistic and Louis only manages to placate him with a video of Peppa Pig on his iPhone.
Marcelo’s parents admit it has taken a strain on their marriage. They have two autistic children and Paula confides:
“God forgive me but I don’t get much enjoyment from them”
As they discuss how all the fun has drained out of their marriage it gets too much for the husband and he has to leave the room as he dissolves into tears. Your heart goes out to him. Louis asks them what it is they hope for, a miracle perhaps.
“Silence” the wife replies.
Another challenging kid is Brian. A burly teenager with an obsession for food he has had to be housed in a special care home and only sees his mother at the weekends. Turns out he burnt down the family home and assaulted his mother and had to be removed for everybody’s safety. Louis goes for drive with them and looks a little nervous as Brian constantly stares at him.
“Brian seems quite sociable”
Louis declares optimistically. Later Louis is left to interact with him and the trademark autistic unpredictability rears its head when apropos of nothing Brian takes off his clothes and hunts for food in the kitchen in just his pants.
“He loves to eat” explains his mum.
The school has helped him control some of his rages and his mother explains that he used to choke and hit her when he didn’t get his way.
“Things were absolutely unbearable”
“What do you think?”
Later in the piece he even manages to turn the tables on Louis by Googling his Wikipedia entry and questioning some of his achievements “Can we move on to something else?”. Louis is with him on his first day preparing for his new school and he offers to give him a hug to calm his nerves.
“I’m not gay you know”
His mother speaks with pride about his son’s achievements and if she had a magic wand wouldn’t remove his autism as she says it defines his character. It’s a lovely sentiment but she is afforded this luxury as she doesn’t have to treat him like a toddler every waking hour of the day. Nicky is the acceptable face of autism: funny in a Dustin Hoffman type way, able to interact with others, chock full of idiosyncrasies and the potential to make a decent life for himself. Most sufferers aren’t that lucky.
Lately we have seen Louis move further away from his tongue in cheek beginnings and he is starting to emerge has a hard hitting documentarian to rival the Nick Broomfields and the Michael Moores of this world. Expect more sobering insights in the second part of his Extreme Love series next week when Louis delves into the world of dementia.
You can watch the programme until May 4th here