AUTISM AWARENESS WEEK
For this week to help raise autism awareness I will be posting a blog everyday to share some remarkable ladies and their journey through life as a mum of a child with Autism. I will be sharing their challenges, the highs and the lows and I will now introduce you to Helen and here is her story …….
My son has a diagnosis of Autism Spectrum Disorder and it took around 4 years for this to happen, we have not received any help from the health services after this time.
Looking back there were signs that Thomas was on the spectrum and as a teacher I kick myself that I didn’t recognise them at the time, but we didn’t have any other children to base our opinion on and the health visitor just laughed when she saw him laying on the floor “thrashing”… what we now know to have been stimming! It wasn’t until we had a car accident and Thomas received CBT therapy with a psychologist who was extremely switched on and suggested tentatively that we should look further into his behaviours. Thomas has never played with toys he organised them and lined them up or grouped them but he didn’t have make believe play. He was hyperlexic and was reading from age 3, he devoured books!
Thomas didn’t bother with a first word, he waited and listened and decided to start with a short sentence “I banged head”. And so began a pattern of falling over things, furniture that jumps up and bangs into him and the beginnings over his drama career ! Thomas is hypermobile and hyper sensitive to pain and textures. He suffers with encopresis and has done since he was 2, it wasn’t until the PDA diagnosis that things started to fit together on that front.
At Primary school there was little to no support until a diagnosis was achieved and then it became a battle as the LEA refused to asses him for an Educational and Health Care Plan as his attainment was too high! I feel one of our biggest wins was getting him into and preparing him for his transition to secondary school. He did this with little to no worries and getting a school that supports him and even makes him pasta and beans every day is amazing!
Thomas can sleep anywhere but doesn’t sleep restfully, when he finds things are too over sensory he shuts down… watching the Tour de France he fell asleep in the grass surrounded by his peers, went all the way to London with school to see wicked and slept through it! He has never experienced take off on a plane as he’s asleep before the end of the runway! Cars, trains you name it and he’s slept there! He also has an obsessive collecting nature and needs to collect everything in a set (I hate pokemon!), then there’s dr who, Lego (he uses that in a sensory way too), and the chewing…. five lanyards down at school now!
It was important that Thomas went to a secondary that would challenge him and he now attends Bingley Grammar School. He is a boy who saves his meltdowns for me and he has been able to mask very well through school. However that has been an issue as at primary when we tried for an ehcp the LEA wouldn’t even assess him because they said his levels were too high and he didn’t need 75% of his time per day with TA support! These days he has support and is doing much better but he struggles to understand the social aspects of children in some lessons and has become very over protective his friend which Sometimes causes issues as he does not get humour, sarcasm or jokes!
One of our most difficult challenges has been adjusting to the fact that Autism Spectrum Disorder, Sensory Processing Disorder and Pathological Demand Avoidance Disorder does mean that sometimes life is a challenge. Thomas doesn’t ever mean to upset me when he says and does certain things but for me I had to learn not to sweat about these and I understood that I am his safe space. A space where he can have his meltdowns because he felt able whereas in school he did not. Each day is a challenge as we sort through the piles of blankets and cushions in his nest to find him to get up! And then to put him back later! His aversion to water and arrival in pre teen early puberty are creating some new challenges but we take each day as it comes, are thankful for the fact he has the help he does get, and never stop fighting, we are his biggest advocates!
Thomas has a mentor at his current school who does support him and who is also an ASD specialist. He works with a laptop as he struggles to write for long periods legibly due to his hypermobilty problems. He also has lego therapy sessions and communication sessions with his mentor with two other students.
Written for Autism Awareness Week – I would like to thank the inspirational and amazing women that have shared their stories with me. Click here for The National Autistic Society and also here for the charity Parents In Need.
Here are the other stories from his week: