Our story
Our story is long, as many families with SEND are. So, I will try to keep it as simple as I can.
Our child was diagnosed autistic at around 4 years old after 2 long wasted years with CAMHS were they tried to convince my partner and I that our youngest child’s difference was our “fault” because my partner and I were adopted. Never mind our older child, who seemed to be the “perfect” child according to those same professionals. Two years of wasted time when only after we finally refused to return to CAMHS unless our youngest had an autism assessment, they agreed and referred us. Thirty minutes into a two-hour multi-disciplinary Professional assessment appointment, they diagnosed Autism Spectrum.
Infant school was a bit of a blur. We had organised the diagnosis and Statement of SEN, though it took a year before the Statement of SEN completed to meet actual needs. Luckily our youngest went to a school with, now we realise, one of the best SENCo’s ever, while my partner and I did everything possible to learn as much as we could about autism. I then started working at the same school supporting specifically other autistic children. Because I felt I could not return to my previous lucrative career as a professional makeup artist.
I stopped working as a professional makeup artist when my youngest was born, as I knew instinctively from day one that they needed more support than their older sibling had. I didn’t work for almost 7 years before starting at my child’s school. My partner ended up going self-employed, making his own hours because as I am also disabled with hEDS and I needed more support. Financially times were tough, and I went into personal debt that ended up taking over 5 years to clear. We suddenly had half the income coming into the home then previously. However, looking back, we are truly grateful our child has this good start in their Infant school because the next 3 years were hellish for them.
Year 3, and though the Junior school was on the same grounds as the Infant school, they had completely separate senior staff and did not communicate well with the Infant school. The Junior school then put our child through 3 years of bullying not only by the other students but by the staff, including senior staff.
Our child was not on any medication besides melatonin for serious sleep issues until the middle of year 3.
Because I was still working at the Infant school, the senior staff of the Junior school thought nothing of calling my head teacher to tell her I had to collect my child and take them home because they were “out of control”. This happened at one point daily until my head teacher, who knew my child well, took control and told them to stop calling me and to just send my child to her office. Suddenly this “out of control” child was happily doing errands for her or completing any work she gave them. I took medication myself temporarily to deal with the intense pressure I was under from the Junior School.
I decided I had read all the books on autism that I could get my hands on. I took every course, workshop or conference on autism, and finally completed my post grad degree in autism. I knew I had to know more for the sake of my child. I continue to pursue educating myself in autism and especially the concept of Neurodiversity.
Two years into the Secondary ARP, because it took some time, with talking therapy at the ARP and a diagnosis of PTSD, we found out exactly just what was happening in that Junior school. I knew the SENCo was archaic, and she didn’t believe in my child’s diagnosis as she said directly to
me. I also knew, regardless of getting an Autism Advisory Teacher in to speak with this SENCo, explaining Good Autism Practice to her and the rest of the staff, that she didn’t really follow it or the Statement of SEN. The teaching assistants assigned to my child, from day one of the Junior school, had less knowledge of autism than I had, as I had only applied for my autism degree when my child was year 5. One admitted that she had one day introduction to autism course. She continued to borrow books from me and ask me strategies for the entire time our child was in the Junior School. Not one of the TAs had any previous experience of working with an autistic student.
But we did not understand the depth of the continual abuse. I won’t go into everything, but if I had known at the time that at least one of these abusive incidents occurred I would have gone to the police, the governors of the school and Ofsted. Here is just one example, to “calm” my child down when they had a sensory processing difference overload, the SENCo would lock them in a room the size of a broom cupboard with the lights off and no window. My child says it felt like hours.
Our child’s anxiety didn’t manifest into agoraphobia until year 3. Suddenly my child is being put on Equasym to deal with his “hyperactivity” and Risperidone for the intense anxiety. They were showing signs of OCD, not sleeping, and needed to know where in the house every family member was. They refused to leave the house completely. The Junior school did not understand, and we had to reach out to a local charity and return to one of the diagnostic professionals for talking therapy and eventually, the medication I've already mentioned. Because of the effects of the medication, our autistic child ballooned in weight and was further bullied because of it. Because of the effects of the medication and extreme anxiety, they would not eat lunch at school. They ended up by themselves in a room, waiting for the first child to go out to the playground so they knew they could leave the room. So, you can imagine the hunger by the time they returned home. It was at home they would finally eat.
Because of the day exclusions and internal exclusions, they sent home any work given to complete. I then became virtually a teacher and teaching assistant to my child. By year four, they also sent any work not completed during the day home to be completed. Because the TAs were uneducated and inexperienced in working with an autistic student, and having little to no support from the SENCo, they did not know how to work with my child. They were told that our autistic child was being “naughty” or “stubborn” when they were struggling with sensory processing differences or executive functioning problems. A sensory overload to them was a childish tantrum with no merit.
So home and school blurred briefly, and the stress felt by the entire household was extreme. Home was a haven previously, and suddenly there was no relief. I decided enough was enough and refused to do the work sent home that my child could not accomplish by themselves. It never was very much as there was no context for it. It hadn’t been taught efficiently enough in school. I refused to be my child’s schoolteacher, because simply put, I was not their school teacher. That decision was hard. I had to accept the repercussions. But for the sake of my child’s mental health, and the rest of the family, I had to make it. Home had to be that haven, that safe place we had developed from when the children were born. Funnily enough, the school was most interested in our child when the SATs came around as they knew his scores in mathematics, science and IT would benefit the school regardless of their incompetence.
The playground was a minefield. The Lunchtime Supervisors, and assigned TAs also had little to no real understanding of autism, though there were a couple who truly tried and were compassionate. Most of them did not understand our autistic child and branded him “silly” and “unruly” or even “a troublemaker”. Our eldest was in the same Junior school as our youngest
for two years and was continually called on to “help”. Our eldest for those two years defended his sibling constantly and truly tried his best. But there were also repercussions for him, and he virtually became a support assistant for those two years regardless of our express wishes that staff did not use him this way.
Some students were especially cruel and would aggravate our child to the point of an explosive reaction and then run to an LS or TA, getting my child reprimanded or worse excluded. In one instance our child reacted by pulling off and slightly ripping a child’s hat. It was a wrong
reaction, but it was thoroughly provoked. The SENCo then decided how to deal with it and purposely decided not to inform us of her decision. She also told the rest of the staff not to tell us either. She decided that my child, in year 4, should meet with the parents of the child of the ripped hat, with only their inexperienced TA accompanying them.
Our autistic child then had to sit and listen to two adults, who did not know the child they spoke to was autistic. They asked an autistic child, with social, emotional communication differences, to “explain” why they ripped the hat. These parents then decided my autistic child’s punishment. The punishment was not being allowed in the playground for two weeks. The day this meeting took place our child came home a complete mess, and we didn’t understand why as he couldn’t explain it. All we knew was that the playground was off limits for them for a long time. You can image my horror when I asked the TA the day after and finally learnt what had happened. Again, had I known then what I know now, I would have complained.
We didn’t learn further details of what took place during that meeting until after our child attended their Secondary ARP when we learnt that these two adult parents berated our autistic child and said they lied when told about the actions of their child that led to the hat being ripped.
I could tell other examples of the daily bullying my child endured. The invites to play, only to be later mocked. The days of taunts and name calling. The adults who berated my child instead of trying to understand and listen. The birthday invites ignored only to be used to mock later. All of this under the eyes of every adult in that school. All the while our child’s self-esteem and self-belief were plummeting. Often some kinder staff would tell me our child’s struggles but felt powerless to intervene or change the situation as they felt inexperienced and uneducated in autism.
The many meetings, conversations, phone calls with the school, with the Local authority, with SENDiass (Parent Partnership at the time) desperate to make those three years easier for our child giving them access to education and the ability to surpass potential. The years of Statement of SEN annual reviews that until year 6 were pointless if not driven by us.
Thankfully everything changed when our chid was finally in a school setting that really understood autism. The Secondary ARP changed everything. Our story highlights the need for mandatory autism training for all who work with autistic children either directly or indirectly, from TAs to LA staff, across the board.
Which is exactly why I now do what o do. I am sick and tired of people who work with autistic children and young people having little to no training in autism at all. A half day or day course just doesn’t cut it if you work directly and closely with an autistic child or young person. I am still continuing to learn about autism so to imply expertise in autism when the person has had little to no real education in autism is wrong. Every single person, in all industries who works with an autistic child or young person in any way should be highly educated in autism.
Update:
Since lockdown, as a culmination of various autistic friends' input, books and talks I have come to the realisation, at 51, that I am Autistic.
www.autismadvocate.co.uk