SEN? We didn’t even consider that we were dealing with an SEN child, we had a ‘Gifted and Talented’ child. THAT was why he was different to other children. As an experienced teacher I knew he was different. ‘Quirky’ seemed like a good label. He sought out adult interaction; wanted to invite his teachers to his 4th birthday; had little interest in playing with other children; his language acquisition was exceptional for a three-year-old; he was building make believe circuits with plugs and switches; and had a fascination for keys and locks rather than toys. However, he was a happy and contented little boy, very tactile and snuggly who made good eye contact and had a great sense of humour and understood idioms, so although (I’m now ashamed to say) we joked that his foibles might be a sign of ASD, we pushed the thought to the back of our minds and just lived our lives. As an only child, we had no one else to gauge him against and so we went with the flow.
The friends thing continued not to click for him and at the age of 4, we took him to be assessed by an Ed Psych – partly to see if she picked up any signs of ASD and partly to assess his intelligence. We came away with an IQ score of 160 and an assurance that he was NOT ASD, just needed to be accelerated. As an August boy, I figured there was actually in-built acceleration in the early school years anyway. Phew, all seemed very positive and it felt like the world was his oyster.
School has never excited him; he could always take it or leave it. We started off in a vaguely alternative small school where there was a lot of freedom for children to direct their own learning and it seemed acceleration would be possible. His interest waned so towards the end of Year 2 we moved to a small prep school where we hoped the structure would help. It was an uphill struggle to make friends but at the start of Year 3 he did so with a new girl who joined the class (interesting to note retrospectively that she has an AS brother) and they remained firm best friends throughout the next 4 years.
It was also during this period that we discovered the joy of living with the strong-willed child. Everything from brush your teeth, get dressed, do your homework, come to the table, seemed to take an inordinate amount of time and effort. Everything. Very, very draining: it felt like we lived with a barrister. Parents’ evening feedback would tell us how capable he was but that he ‘struggled to work with others’. I asked the school several times about the possibility of ASD but felt like a fussy mother – even worse, a fussy mother who was a teacher so was questioning how well they knew their stuff.
The one good thing his prep school did was offer a wide range of instrumental lessons and it was as a result of this that his musical giftedness became apparent. With barely any practice to speak of, he whizzed through his grades with Distinctions all the way. Obviously, we were proud and thought he was wonderfully gifted but he also made musical people in the know stop in their tracks as well. We were advised to pursue a music scholarship which we did. Maximum award. Tick. Luckily for us, it is also a school with an excellent reputation for pastoral care, but remember, we still had a gifted and talented child, NOT an SEN child so it seemed a bit superfluous but ‘a good safety net’ for navigating the unknown teenage years. I also tried to excite him about secondary school by telling him that there would be other bright boys just like him and we truly hoped he was a boy who had spent his childhood waiting for the academic stimulation secondary school would bring…
September 2019. Year 7. The friends thing still didn’t click. Whenever I asked about his friends he would tell me that they were his classmates, not his friends. He would hide out in the music practice rooms or walk the corridors and eventually found his way to the library at break and lunch and told me he ate lunch alone which made my heart bleed for him. I’d pick him up from the school coach in the evenings and try to chat about his day only to feel frustrated that he just wanted to be plugged in and zoned out from conversation. This is when the strong-willed child started to spill over into meltdowns. They scare me and leave me with a physical pain inside, for his distress and for the separation between him and us that means we cannot reach him. Threats of self-harm accompanied them and just before February half term we eventually reached out to the school.
Every single member of staff has been amazing. Thank the Lord we inadvertently chose a school with such a strong pastoral network. The Head of Year and form tutor were the first of his teachers ever to nod in agreement when I mentioned again the possibility of ASD. We agreed that he would meet school’s visiting clinical psychologist. She explained that he was expending so much energy during the day with the sights, sounds, smells as well as the social and academic demands of school life, that when we ‘demanded’ more at home (conversation, eat at the table together etc) he had nothing left to give and would simply push back! Bless our boy.
So. It turns out we DO have an SEN child after all. An SEN, G&T, Asperger’s child. For years I have referred to him as a square peg, round hole kind of boy. Turns out he’s more of a dodecahedron puzzling over the round hole that others fit into so easily! ☹ The amazing clinical psych, Dr K, said she had diagnosed him within five minutes of meeting him and we are now in the long wait for a CAMHS appointment and official diagnosis. I know that CAMHS can be a mixed bag but we want to try before we seek a private diagnosis.
The meltdowns haven’t gone away but we are learning to understand the triggers, to manage situations and to divert more skilfully. We fail along the way but now demand less of him and continue to be guided by the fantastic Dr K. Although I am grieving the loss of the son I thought I had and worrying about the future for the amazing son I actually have, she sees much scope for improvement. It was strangely, an immense comfort to hear her say that he is one of the most challenging and oppositional children she has ever worked with. Not in a ‘throwing the furniture’ kind of way, but in a barrister-like, manipulative kind of way, PDA traits - ASD: the gift that keeps on giving. However, it meant his behaviour wasn’t our fault, wasn’t our failure.
We have had to throw the parenting handbook out and ‘let him get away with’ behaviour we would never have imagined we’d accept and we have developed a thick skin against those who think we are doing just that – ‘letting him get away with it’. This is a paradigm shift as a parent and we feel disempowered and at his mercy a lot of the time, dreading the next trigger and subsequent outburst. That is a difficult place to live but we now know that simply navigating life is a stressful experience for him and we want to support him as much as possible. I feel sad that we missed the anxiety though and just thought of him as difficult. I feel sad that I didn’t advocate more forcefully on his behalf earlier in his school career but allowed myself to be placated by people not willing to put the work in to explore his difficulties further because he was bright and ticking so many boxes and frankly, it would’ve been a lot of effort for them. I feel embarrassed that as a teacher with 20+ years of experience in the classroom, I didn’t build the big picture. All I can say in my defence is that ASD looks a LOT different in the classroom to the way it looks at home. I always knew that life was far more complicated for SEN families but I have an even greater respect for them now that they are my tribe.
We are now on a new journey. We have the same talented and beautiful son we always had but we try to see the world through new eyes.… his eyes! As he approaches his twelfth birthday, we now have the added complication of disentangling what is a feature of his AS and what is simply due to the fact he is an adolescent! We are rebuilding our relationship and he IS coming back to us in small ways. We hope that our trajectory remains the same when we come out of lockdown and return to school in September. We are learning to be more mindful and appreciative of the journey we are on and to hope that we can all navigate the inevitable bumps in the road. We have no choice but to journey on and do our absolute best: the world can still be his oyster.
Claire