Owen Gubbins BSc, MSc Mary Gubbins BA, MA (Seáns Parents)
“Seán, Seán …. Seán, come back from the T.V., Seán … Seán I’m talking to you! Seán” and that’s how it started. I thought at first he was ignoring me or maybe he was a bit heedless or worse what if he had a hearing problem. He is two and a half now he talks one or two words at a time he does the flash cards (O.K he says bird for E is Eagle). He has been walking since he was one. Hello and goodbye to the checkout operators in the supermarket. He works the DVD player, but he doesn’t look at me or follow what I’m pointing at all the time. He should really be making sentences, so we take him to private speech therapy lessons (one evaluation at home, five sessions at the therapist’s office) He has just turned three and half now and he doesn’t talk as much. Fireman Sam and Thomas the train are not getting played with to any great extent instead he spins the wheels or chews them. His cousins roughly similar ages are running around the house he avoids them and climbs the gate, starring off into the field. He isn’t toilet trained yet. “Seán, Seán, Seán don’t flush the toilet if you’re not going to use it”. I really should get his hearing checked.
Seán has been to the doctor, the hospital twice for hearing tests (sedated for one) the second test was the last time Seán spoke to me, he woke half way through pulled of the wires and as I walked the corridors with him crying in my arms hoping he would go back to sleep to finish the test. “I’m sorry dada I’m sorry” was what he repeated over and over again. He is nearly four now we meet the multidisciplinary team (the physiotherapist takes one look at him jumping on the table, “no need for me here”) the team also has an occupational therapist (OT), speech and language therapist (SLT) and a phycologist; they wish to see him at their office, at his playschool and at our house. I was led to believe that at our house Seán would be observed in his own environment so to speak. When the lady arrived she sat down at the kitchen table and said, “So Seán is autistic and he will probably never speak again”. To which I replied, “Is there any chance your wrong could it be a hearing problem”…”NO”…”or psychological given the arrival of his baby brother”…”NO”. She then produced a questionnaire that needed to be filled out. After that Seán had an appointment with the autistic spectrum disorder (ASD) team another SLT, OT and phycologist. Another two meetings with the ASD team and Seán now four and a half had his diagnosis. A social worker came to the house next. Then the paediatrician sent him to hospital for blood and urine analysis (it took seven adults to hold him for the blood tests).
So the first effect of autism on children is appointments. As can be seen he has already had a lot but it was about to get much worse. He needs speech therapy and occupational therapy and other types of therapy appointments (more on this later).
We have moved from Limerick to Cork a new house, new bedroom, new shops, and a new playschool. For some children with autism changes in routine can trigger tantrums and behavioural problems. Not Seán; primary school means a uniform a resource teacher a special needs assistant longer hours and a lot more children in the same class; all goes well. From child to child how autism affects them is different. Seán has communication problems, doesn’t like to sit still and some sensory issues. Others could struggle with emotional control and frustration. Kids with ASD find it hard to see things from other people’s perspective so they are unable to see how their behaviour affects others and/or can’t foresee or understand other people’s behaviour. This can be tested for using the Sally and Anne Test (Baron-Cohen, S. et al (1985)). Autism causes a lack of joint attention which can make it difficult for children to read facial expressions or learn turn taking. “Seán look it’s an airplane … Seán do you see it Look … Seán” (but he doesn’t look).