Here we go with things I have learned as the mother of an autistic son (TIHLAAMOAAS for short (!?)) - No. 2 - Your gut is normally on to something or my other title - don't be put off by a tired doctor who says you read too much.
It started with little things, not turning to greet me when I came in the room, lack of speech or playing together, not copying with my infamous wind the bobbin act (goes down a storm normally honest); a seeming disconnection. And obviously the bonkers bits like the eating of the cat biscuits, drinking out the loo and weeing on exactly the same patch of carpet even though the toilet and potty were just a step or two away.
I am a healthcare professional, and I learned my professional knowledge from text books and experts. So I pretty much applied this to child rearing and read development and psychology books from around 12 weeks pregnant with the first. So I knew he was doing good and hitting milestones at roughly the right time. And it made it more obvious that Aidan, my second child, wasn't. Eventually, after a failed hearing test at our clinic visit around age 18 months, we had a visit with the pediatric doctor.
I had written down some things that concerned me, my brain was still mush as I still wasn't hitting a 4 hour sleeping cycle, and so I popped this little note out and mentioned the lack of interaction, the lack of eye contact and the fact he wasn't speaking as of yet. I mentioned that it was the hearing test that had flagged this up. I also said I was aware of the development milestones and noticed a lot of differences from my oldest son.
Well that day Aidan pulled out the stops. Played with the toys correctly, smiled at the doctor, and basically looked like a pretty normal 18 month year old. So he decided not to persue this and said we would review at the two and a half year review by the health visitor - a whole year later. It was the written comment "Mother is aware of autism and does extra reading." that knocked me for 6. I write notes about patients for a living and I know exactly what that veiled comment meant.
And it made me question my own gut instinct. Maybe I am just a neurotic mum who is so obsessed with being good that I am seeing things that aren't there. Maybe there are loads of kids that snack on Iams.....
Most of the family and friends said he was fine, nothing wrong with him, you are just a busy working mum and he is a second child. Way too much guilt.
So I left it until the two and a half year review, just like the doctor suggested. By then it was glaringly obvious something was wrong, barely any babble, no pointing, no eye contact, isolated play and we were referred for a hearing test again! Really!!! That boy could hear Teletubbies (google it young uns) at 500 paces and be in front of the TV in a flash. Nursery though he was a naughty boy because he wouldn't listen and he bit one of the teachers. Again I was left wondering what kind of awful parent I had become.
So at age 2 and 8 months we went for the hearing test. I still didn't want to come across as the anxious over the top mum, so went with an open mind to the specialist at the Phoenix center. Within minutes of getting in the room it was obvious the testing would be a challenge. Aidan was very isolated in his play and obsessed with taps and water - at home he regularly flooded the bathroom and his little hands would be freezing from the cold tap - we had to shut the hot one of for safety. It was easier to pop him in the bath or take him swimming and I did that as much as I could.
He headed straight for the taps, behind a screen, and ignored the doctor. When the doctor showed me the test, I explained there was very little chance of Aidan understanding what was being asked of him. That lovely Doctor - Dr Saffaf, sat me down and quietly asked me if I had heard of something called autism.
I cannot tell you the relief I felt that finally someone didn't think I was nuts. I think I even cried a little, but not out of sadness, out of relief. Finally someone else saw what I saw. And that started the journey of diagnosis which is a story for another day.
And so - things I have learned as a mother of an autistic son - No.2 - Trust your gut, it is rarely wrong.
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