CFHD EDI Champions – raising awareness of invisible disabilities
Over the last few years some members of our EDI Champions group have been sharing information to raise awareness of invisible disabilities. In this piece, Louise, a parent, expert by experience and one of our EDI Champions introduces this article by a friend of hers whose child is waiting for an autism assessment.
Introduction
This piece has been written by a parent of a young child.
The question is based around how/why you first start to wonder or explore why you feel there is something different about your child and the first steps you take on the journey for diagnosis.
I am sure there will be many parents that can relate to the article and the hope is to be able to help these parents access resources whilst they are waiting for an assessment.
Is it Autism?
As a young child B was developmentally perfect, he hit all his milestones on time, he was very inquisitive and very clever. The only difficulties as a young child (under 3) were poor speech pronunciation, despite having a large vocabulary- people were often unable to understand him, however I was used to his pronunciation and therefore used to “translate” to others.
B’s sleep was very poor, it would usually take over an hour to get him settled and asleep in bed, he would wake often in the night and would not be soothed easily. I ended up co-sleeping with him from the age of around 2, which greatly helped him to re-settle during the night when he woke up.
B had quite intense separation anxiety, and he often followed me from room to room within the house. He would be very distressed when he was left with others but would settle after a little while.
He also played slightly differently with toys, instead of pushing a toy car around the floor he would often be trying to take it apart to see how the pieces go together, or he would prefer to sort coins into order, or put them into a piggy bank (empty it and then start again), rather than play “shops”.
At this age I had an instinct that B may not be neurotypical, but I didn’t see any behaviour that was extreme enough to warrant a “label”. A lot of children this age may show all the above behaviours and be completely neurotypical. I also couldn’t pinpoint his behaviour to any particular “disorder”. I felt he was too sociable with others to be Autistic, and too rigid with routines to have “ADHD”.
As a 3-4 year old, B started pre-school, 2 days a week. The separation anxiety was very extreme, and he spent his first few weeks quite distressed. He refused to eat at nursery, and also to use the toilet. He became fixated on checking the time with his teachers, to know how long he had left until home time. He did begin to settle after a month or so, but shortly after we went into Lockdown his nursery closed.
Once he was back at nursery after lockdown, his separation anxiety was improved, however he developed (what we now know was) Tics. He began throat clearing and sniffing. It came out of nowhere and was very pronounced, it would be something he would be doing all day long, from the moment he woke, to falling asleep. At the time we went to the doctor who diagnosed Asthma (incorrectly). This Tic slowly eased off, and by the time B finished pre-school it had gone.
Pre-school referred B for Speech and language therapy, as they (over the 2 years) were still having difficulty understanding him.
Around this time, B experienced a fire alarm going off while staying overnight in a hotel. This began quite an obsession for him, he would seek out fire alarms wherever we went, he would talk about them often and watch videos on his tablet of different alarm sounds going off.
It also became more obvious during this period that B was extremely uncomfortable in some social situations. He would often blank people who were trying to engage with him, acting as though he could not see or hear them. This was especially pronounced in any medical setting, where he would not engage at all.
Around this age B’s diet started to become slightly restrictive, he was refusing many foods that he had previously eaten, and I could see that textures and smells were becoming an issue for him. His rigidity with food began around this age, and he became unwilling to try new foods.
At the end of B’s time at pre-school, I had done more research online and was feeling more confident that he was in fact Autistic. I wasn’t sure enough to reach out to any professionals, however I did spend lots of time researching how I could help B with some of his difficulties.
As a 5 year old, B started mainstream school. I did mention to his teacher before he started that I did have some suspicions that he may be Autistic.
B thrived intellectually during his years at infant school, he remained extremely clever and picked things up quickly.
He became very rigid in following the school rules (which makes him an excellent student!), but he would also spend lots of his time telling others what they should be doing, and informing the teachers if he saw things that were against the rules (which is not such a popular trait amongst his peers).
B was able to maintain friendships, however he would “pick” a child from his class to be his friend and not be very open to making other friends. He also seemed to lack “bonds” with children, and although would engage with them, he wasn’t particularly interested in building friendships with them. He was known to completely blank children outside school, but would engage with them when he was in school with them.
B developed several more tics whilst at school, such as eye rolling/ head jutting. The tics would be very prevalent and constant and last anything up to a few months, before slowly stopping, to then be replaced by a new tic.
During his second year at infant school, the doctor diagnosed his Tics, and I also gave them a log of his behaviours and asked if they thought he may be Autistic. The doctor agreed that this may well be the case, and we were referred for an ASD assessment. We are still waiting for this 3 years on.
B has developed lots of routines over his school years, these span from set routines whilst brushing teeth, certain phrases I must say before bedtime, things that I must check for him before he leaves the houses for school. His behaviour can be extremely rigid and he will easily become distressed if something is not as it “should be”
As a now nearly 8 year old B still has many challenges; his rigid routine, his sensory issues with clothes and food. His diet has become more and more restrictive, and he becomes physically distressed if he is expected to eat an unknown or unsafe food.
There is little support in our area, but I believe B has ARFID, which is a food disorder that is often seen in Autistic individuals.
B is not very independent with his personal care, due to sensory issues he finds it hard to get dressed (material not sitting correctly), put his socks and shoes on, he will not wipe himself after the toilet, therefore will only go when he is home and I am there to assist him.
He displays a huge fear of quiet places, he won’t go into an empty room alone (without noise) and he often creates noise (shouting/humming/high pitched noise) when things go quiet.
B, as he gets older, has a lot more periods of intense hyperactivity, throwing his body round, excessive talking, bouncing on a gym ball, appearing to be sensory seeking.
He also has very intense and sometimes violent meltdowns at home.
I feel B somewhat slips through the net. He is so rigid at school and naturally intellectual, that the teachers have no issues with him. I believe he masks at school now he is a little older and that therefore leads to the meltdowns and struggles at home. A lot of B’s challenges are things that don’t particularly affect others (toilet troubles/ ARFID/ sensory issues) therefore most people would not look at him and see any neurodiversity.
We will continue to await his assessment and manage his difficulties at home as best we can. I hope that a diagnosis would help B understand himself better and know that it is ok to be different and to have challenges that others don’t. It will hopefully also open up some support avenues to assist us both as different challenges will undoubtedly appear as he gets older.