My god, when I look back at all the therapists, specialists, tests and hoops we jumped through it amazes me.
Early intervention with all types of therapy, suggestions from Specialist Children's Services for the creche workers, paediatricians, psychologists, psychiatrists, professors, geneticists, audiologists, opthalmologists, blood tests til we all felt like pin cushions, autistic school, hydrotherapy, speech pathologists, allergists, EEGs, ECGs, extensive testing in a study at the Newcastle University, you name it and we were doing it.
I even came across some loony locum GP who tried to sell me the old 'refrigerator mother' bullshit from Bettelheim; tried to tell me that I should stop work immediately to spend time at home (where, it was implied, my place was) and bond with my child as it was the lack of bonding causing all the problems.
Riiiiiiiiiiiiiiight, thank you Dr. Head-stuck-up-arse, we have actually moved on from attaching leeches to people's eyeballs and chopping heads off to cure migraines.
But, in amongst it all was a faint odour of desperation.
Not from the parents, per se, but more from the medical professionals, an almost running on the treadmill with a gazillion balls juggled in the air waiting for someone to realise that the emperor was wearing no clothes.
These professionals who kept referring we parents to this neurologist or that audiologist or the professor up in the lofty heights of the 7th floor...none of them had answers or the cure or the magic combination to take away the angst our kids had to endure every day.
It was like they had to keep going through the motions to justify their place in the system; the kids certainly had their role to play, fulfilling it perfectly in their starring position but when the medical people shrug and have nothing to offer but yet more referrals the slight smell of double-dutch and bluff began to pervade the air, the scent of bargaining between a god who has ignored their pleas to be shown the hidden secrets of curing Autism and the plain-speaking parents who's eyes began to pierce the medical veil of bluff after several months.
The one thing most parents will say is that it's not the exhausting routine we have to go through but the anguish we feel cutting into our guts when we see our kids lashing out, screaming their pain and having little or no enjoyment from the world around them...and knowing there's fark all we can do.