When we received George’s ADHD diagnosis back in August we were refered by our local CAMHS to a more specialist hospital for another ASD assessment. George was initially assessed for ASD via a DISCO interview back in 2010 when he was 3 1/2. At that time they felt he didn’t meet the criteria for any diagnosis at all. As George is now 10 and still has substantial difficulties not covered by his Tourette’s and ADHD diagnoses we requested he have a repeat autism screening.
We had been waiting and chasing up this appointment, all the while worrying about time ticking on with George only have a term and a half left of primary school.
Finally, we received a phone call last week offering us an appointment. A team from the hospital had just transferred to our local CAMHS clinic so we were able to go there instead of the hospital.
We had our appointment yesterday and were understandably very worried. Usually George can manipulate these situations just enough to cover his difficulties. Years of social stories, emotional literacy sessions and psychotherapy have taught him enough to know what people expect him to say and how to respond, even though he can’t apply this knowledge to real life situations.
George was reasonably calm, he is very familiar with the building and rooms and he loved playing with all the fidget toys in the waiting room.
George was taken into one room for his observation and my husband and I went into another room. We spent around 2 hours answering questions and filling in details of George’s early development. We had also printed out notes of all the things we were concerned about in case we didn’t have time to cover them all or missed anything out.
At the end of the appointment the two Drs went away to compare notes and were able to tell us at the end that they will, pending an official report and re-checking of their notes, be giving George a diagnosis of ASD. The Dr who had observed George had picked up on a lot of things George usually manages to disguise and George was really open and honest with him which was a huge relief.
After the appointment we felt rather odd and surreal, we had been pushing this diagnosis for the best part of 9 years now, we felt relief but also a sense of sadness and regret. We weren’t upset about the diagnosis but at the fact George’s childhood is nearly over, we have wasted his childhood not understanding him, watching him being treated unfairly by others and ourselves at times because he was never fully understood. When I look around at others that received much earlier diagnosis’s they have had much more support and had more guidance than George did. George has grown up with such a poor self image because of nobody understanding him and it is unfair.
I almost felt like I was meeting George for the first time, finally being able to see the person I had suspected was there all along but had been prevented from getting to know.