So, March 10th. It feels like a date that should be recorded, a date that will be forever etched into my memory. It was after all the day my middle son Zachary officially received his diagnosis; Autistic Spectrum Disorder, ASD. At the tender age of 3 years and 4 months, he is fairly young to have such a big label attached to him. Along with the recently acquired one of Sensory Processing Disorder, SPD.
We have been on the journey that lead us to this point for almost a year and in all honesty it is no surprise he was given this diagnosis. In a way it was what we hoped for, I’m not sure if that is the right use of words, obviously nobody ‘wants’ their child to have ASD. As I said we have been on this journey for almost a year and if he was on the spectrum, I wanted to know as soon as possible, so we could get him the best early intervention available. He has already had so much and now he will continue to get the help and support he needs, anyway as per normal I digress.
So, yes, even though this was what we were expecting it still hit me like I was being slapped round the face by a tonne of wet bricks.
I know, I know I mixed up my phrases, but that’s what it did to me. I couldn’t think straight. I laughed. I laughed uncontrollably. My husband Sean had to apologise for me. I do that sometimes when I am nervous. I laugh… It is like my brain says “hey, how can we make this situation any more uncomfortable?” Cue, inappropriate laughing. I laugh and I end up through the laughter, trying to apologise and explain I don’t actually find the situation funny. I will say I think part of this is down to the way they present you with the diagnosis.
We were back at the Child Development Centre, CDC, they sent me and my husband into a room to read through the report on our own. Here are some of the comments from the report, reading these make me smile as these are just part of who he is.
“He could be almost ‘over-confident’ in his approaches to unfamiliar children”
“Zachary was observed to flap his hands when enjoying himself. Some fist clenching was observed”
“Zachary’s eye contact was variable. At times he would look in the general direction of someone, but focused on their forehead. At times he could be intense and stare”
“Zachary was unable to select pictures of objects according to their functions or attributes, eg, something we kick, drive or eat”
“Zachary did not respond to big or little even with signs and gestures”
We were then joined by our Health visitor, she read through the report with us and said. “It doesn’t tell us anything we don’t already know and there is no diagnosis, I am going to ask them what stopped them diagnosing him as clearly something did”. We were a little confused and in all honesty a little disappointed.
At the end of the thirteen page document the assessment summary concluded with this
” Zachary is a lively enthusiastic little boy who has been making good progress as of late, however his development is still a concern. Zachary is experiencing difficulties in three key areas, communication, social interaction and flexibility of thought and behaviour”
This left us very perplexed as we thought all they have done is describe our son, and as far as we were aware the three main areas of criteria for an ASD diagnosis. We knew all of this about him already hence all the assessments and early intervention work in place with him. After a small discussion with the Health visitor we were joined by the diagnosing Paediatrician and the Teacher who had been present at both assessments at the CDC.
We discussed the report and issues that had been raised since our last visit. At the end the Paediatrician read the assessment summary and said “and therefore we are diagnosing Zachary with ASD, do you have any questions?” This is when I began to laugh, it just seemed so unexpected.
After my laughter subsided we spoke seriously about what this diagnosis meant for Zachary and the rest of our family. We already have him down for a nursery this September, the SENCO is amazing, a real salt of the earth type. The CDC knew of both the SENCO and the pre school nursery and agreed it would be ideal for Zachary. When we visited the nursery she spoke of the importance of finding out what behaviours were due to his ‘condition’ and what were due to him being a 3 year old boy. This made me very happy and I thought Zachary won’t get anything past them.
We discussed options for schools, the possibility of getting an Education Health plan EHC and he has also been referred back for Speech And Language Therapy, SALT. We left the building knowing that nothing had changed and yet at the same time everything had changed.
We walked away saying “Our son is autistic” no maybe, no probably, no possibly. It is what it is. It’s funny because you place so much importance on that diagnosis. Yet Zachary was still Zachary, a happy go lucky, energetic, loving, little boy with the biggest brightest smile. I am relieved he has the diagnosis, because I know it will bring understanding, patience, tolerance and above all acceptance from many people towards him. I know through school he will continue to receive the help and support he needs.
Through all the different people working with him, his willingness to learn and the love he has from all of his family and friends. Zachary is going to have such a full life, I can’t wait to watch him grow. I’m excited to be a part of his adventure. So March 10th, the life changing day, where nothing really changed at all. It’s all kind of extraordinary. Just like Zachary.
♥ Have you been down the diagnosis route? How did you find it? Were you expecting it? Was it a shock? How
did you deal with it? Are you (Have you just) gone through it? If you need someone to talk to, reach out. I am here.
Much love and many thanks