Emma Leigh-Currill
My 3rd son is diagnosed as autistic. There was no disappointment, no crying and no existential crisis for him when he was given the (not surprising) news. There was an agreement, an acceptance and then we moved on.
Why has this been the case for us?
We knew our chap thought about the world differently from quite a young age but being the youngest, at that time, of 3 busy boys his differences weren’t anything that stood out too much. He was active, physical and curious. He was also safe in his little family who accepted anyone who belonged to it as a person in their own right because that’s the way we parent. Difference only shows when compared to others and when we are measured against some yardstick. At home we didn’t compare and we didn’t have a yardstick.
It wasn’t until he went to school that things started to change and his differences became apparent. He didn’t need to show he could read (and actually said this when I asked him why he didn’t show his teacher), he didn’t want to perform in the school play (‘I’ve told her but she’s just not listening’) and he was a confusion to his his teachers (‘I’ve enjoyed teaching him but I never felt I really got to know him’). My son didn’t need his teachers in quite the same way his peers did and he certainly never needed to please them. Stickers didn’t motivate him and he wasn’t interested in house points or any behaviour tool that a teacher might use to create a cohesive class. My son was my son and he was fine with that.
It was in Year 2 that the differences really showed themselves. My son had become a situational mute (not ‘selective’ or ‘elective’; he wasn’t choosing to not speak) and he would only talk to his teacher and a couple of friends. This was becoming an issue that the school felt they needed to do something about so it was recommended that he attend a nurture group for children with conversational challenges. Looking back this was well meant but my son didn’t actually have conversational challenges because he can talk the hind legs off any donkey (and does regularly) it was the social situation that caused him anxiety (he’s since used words like ‘fear’, ‘terror’ and ‘scared’ to describe how he feels/felt).
Just like with any fear, an intervention needs to be targeted with small steps that allow for success. Putting a SM child into a conversation group and expecting results is the same as just throwing someone into a lion’s den because no person was ever helped by being scared and terrified. In fact the opposite can happened and the person is more anxious than they were before. We didn’t want this for my son because we could see where it might lead -school refusal, increased anxiety and mental health difficulties.
We also knew we were a family who let our members be who they are supposed to be and this has been, and still is, at the very heart of all we do.
My son came out of school and started 6 years of home education.
Did we just hide him away from the social world in order to protect him from his fears?
No.
We slowly, over the years, built up his confidence to try to be part of social situations he wanted to. Most importantly, I feel, we talked to him to ask him how he felt, what he wanted and if he wanted to be more social. We can’t just assume all children who find social situations difficult want to be social. Some are perfectly happy to spend time alone in their own company. Some want to dip into the social world and then retreat to recover and some are happy to be social but know that they will need to process their social experience and that this is something they will need to do to be able to continue their social life. We need to listen to their thoughts and opinions because forcing anyone to do anything that causes them this much stress is never going to work to affect change.
We were very social in those 6 years. He joined groups, attended workshops, went on holiday, experienced different people and places but he had his very own support group with him whenever he needed us. His brother was his protector and, often, his voice and I was his guide and mentor: the one who helped him move himself forward in the direction he wanted to go.
School would never have allowed this because in many schools individuality isn’t allowed or encouraged. Each pupil must conform to the rules of the school and, often, very few allowances are made when a pupil needs something different. At that time my son wasn’t able to perform on stage or read aloud to his class. He wasn’t able to make friends easily and talk to different adults that might come into a room; this wasn’t about my son being defiant or a challenging pupil, but someone who had a genuine difficulty in doing, what appeared to be, the simple things of being a school child.
One day I could see my son wanted to go and buy a brownie in a cafe that we often used. He sat at the table watching his brother and wanted to buy one himself but his fear stopped him. ‘Would you like me to come with you?’ I asked and he nodded and we did it together. He stood with me with no expectations of speaking but by standing next to me he wasn’t at the table but part of the buying process. He experienced the anxiety of queuing (many autistic people have anxiety when queuing), watched his mum use the right words to get what she wanted. Saw her make conversation with the server and then pay using a card (that he found anxiety inducing when he first started to pay for things). The success criteria was eating the brownie. The reward was eating the brownie; he didn’t need a sticker on a chart to show this.
Gradually we worked our way up to my son being able to buy the brownies himself by rehearing what to say, having the exact money or using my card so he didn’t have to, at first, speak a lot. The servers got to know us and would help my son if he got stuck and they were patient and kind and were just what he needed.
He would never have got this in school.
We then built on his skills by going to a different cafe. This is often what autistic people find challenging and where neurotypical people can’t understand. ‘Why can’t you buy that brownie? You’ve done it so many times in the other cafe?’ But the other cafe is familiar and we know the person serving and we know what words to use because we know what food they sell. We know how much things cost and we usually buy the same thing each time and sit in the same seat (and even the same toilet – no? That might be just me then) because this makes us feel comfortable.
We can’t predict something that isn’t predictable and that’s what gives us anxiety and fear and terror.
So we walked into the new cafe and hung back. We looked about us and took in the surroundings. We made a plan by finding the menu and using our phones to write down what we wanted to order – so we didn’t forget when it was our turn to order- and this helped us know what words we needed to use.
And now my son can go into a cafe and buy a drink and a cake and he has strategies to help him do this. He won’t spend years avoiding cafes because his anxiety takes over like I did.
My chap worked his way up to being able to attend groups and be able to express his opinion and have his needs met. He was able to buy a souvenir in a gift shop and go and ask the member of staff that question he wanted answering. None of this he would have got from being in school.
Last year he asked if he could try school again. I was astounded (as was my husband) because we didn’t think this would ever be the path for him again. When I asked him what had changed his mind he said, “I don’t want to be the quiet one in the corner anymore.’ So we applied and he got a place and off he went. There were a couple of bumps along the way but no more than another pupil of his age. He did take a long time to make friends but he did make friends and I can see him at break (I work in the same school) kicking a football around and chatting with them.
He does retreat at times when it’s all a bit much. He spends his independent work sessions in the learning support room because he finds the unpredictability of independent sessions difficult to manage. He comes up to LS and sits quietly in the corner and gets on with what he needs to.
This year he joined the CCF (combined cadet force) which again, my husband and I were astounded. When I asked him why he said he wanted to, ‘…put my hand up more and join in.’ He applied, got a place and signed up for the year (this is a prerequisite) after researching what he was joining and all that that entailed.
I do believe we could have trod a very different path with my son had he been forced to conform and be ‘normal’ and compared to the other neurotypical children.
He’s always known that he found certain things in life difficult because he knew and we also talked about it. We used the word autism as a possibility but generally labelled his difficulties as ‘social communication difficulties’ so he had an explanation and a reason. This helped him understand himself early on and know that it wasn’t because he was broken or was ‘stupid’ (my second son often used this word to describe his differences). He’d met many autistic people while he was home edding and had made room in his life for them, made friends with them, got to know them and found he was similar to them.
So sitting in his dad’s office while talking to an autistic assessor who was assessing him for autism wasn’t a big thing. This is why there was no existential crisis because he knew who he was before and who he was wasn’t a problem or an issue for a school curriculum to manage. Luckily -and I do say he was lucky- he was able to develop along his own trajectory towards achieving targets that he set. And he smashed each and every one.
I asked my son what he was most proud of after his first year back at school. He said that he’d taken part in his class assembly (on stage) and that he’d performed as part of a drama group. Neither was mentioned on his report. This is because what matters to him is not on any tick sheet or curricula.
My son was allowed to be autistic even before he was diagnosed as being so. He was allowed to find the social world difficult and we gave him the skills he wanted (he wanted) and this gave him the skills he needed. By not exacerbating his anxiety and allowing him to retreat when he needed he never reached a crisis point at which many schools only then search for a reason, assessment and/or diagnosis.
Yes, difficulties can be developmental and we don’t always know what we’re dealing with but we can treat a child as an individual who has a need at that moment and we can meet that need. We don’t have to make all children the same in doing this.
I know that taking my son away from a schooled education at 6 was the best thing we could have done for him. It allowed him to find out who he was while being supported every step of the way. He’s happy in school now so it didn’t put him off and he’s fabulous at advocating for himself to allow him to be the wonderful autistic person that he is.
