Dr Sona Kaur – Website Q&A
Harry is seven with high functioning autism. Thanks to the determination of his parents, who knew from an early age that some of his behavioural patterns were not ‘neurotypical’, Harry was able to get the diagnosis that he and his family needed and put the right processes in place to help him thrive.
Here his Mum explains the journey they have been on to get to this stage and shares her tips for other families navigating a similar path.
When did you first suspect signs of autism in Harry?
There were no obvious signs early on with Harry. He was advanced in some respects and was talking just before he turned one. He could be quite shy in some situations and you had to let him come to you. Things changed around his 2nd birthday, initially we put his behaviour down to the terrible two’s. His routine had also shifted during that time so we assumed some of his behaviours were down to this. However, some situations were too difficult to ignore. For example, we would be at the park and he would just run away or in the supermarket he would have a meltdown in the middle of the shop. I was pregnant with my second child at this point so it was becoming difficult to keep chasing after him so I just stopped doing things and putting ourselves in those situations.
As a parent you wonder if this is just normal two-year old behaviour or if it’s something else. My husband didn’t see the signs initially, but he wasn’t with Harry as much as I was. In lockdown, when my husband was at home a lot more, he started to notice the same things I had. In a way this was validation, and it made me feel better that it wasn’t just me.
I also mentioned Harry’s behaviour to his pre-reception teacher when he started at preschool, who initially didn’t see the same signs. But as time went by she started to agree. We now realise he was masking his behaviours at the beginning. Once he started to settle in a bit more his teacher started to see some of the behaviours that I had spotted including things like sometimes needing his own space away from the other children, and being eye contact avoidant. He could become quite overwhelmed and act out in certain situations. After she flagged some of these behaviours we made the decision to go for diagnosis.
What was your experience getting a diagnosis?
We started the assessment process when Harry was three and he was formally diagnosed when he turned five. Initially I thought we would be getting him tested for ADHD but the specialist said Harry’s behaviours where typical of children with autism. Following this an NHS nurse came to visit Harry at school to assess his needs. It sounds a bit cruel but we had to set up situations for him that we knew would show her the behaviours we were concerned about. From that point it was 10 months until we were able to see the occupational health specialist and another six months before we received the letter to confirm what we now knew was autism.
How did you feel when Harry was diagnosed?
It was mixed emotions when we received the diagnosis. On the one hand you’re relieved that you have found the reason he was behaving the way he was. Everything started to make sense. But on the other hand, you’re obviously very sad about the diagnosis. Even though you are pretty certain of the diagnosis when it comes, you worry about how they will cope in the future and you want to ensure that they will be able to live as normal life as possible and that you can put in place what you can to enable them to thrive.
What support do you get from Harrys school?
We’ve been very lucky with the school that Harry goes to. They have put in place lots of things that really help Harry cope and enjoy school. He has his own spot on the carpet in the classroom so he knows where he needs to sit. Harry can get a bit distracted sitting still on the carpet so knowing how much Harry loves the films, the teacher put Harry Potter stickers on the ceiling to give him something to focus on. He also gets Harry Potter stickers for well done and rewards. Harry loves these as it’s something he can really identify with and helps him feel safe in the environment.
The school also give Harry additional transition days when moving up a year to give him more time to get to know his new classroom environment and familiarise himself with incoming change. They also give Harry a visual timetable outlining how the day will look. They are also very accommodating, for example if there is going to be a surprise for the children on a particular day, they will let Harry know beforehand what it is knowing that he doesn’t cope very well with surprises and quick changes.
Harry currently has a one plan and we will apply for the EHCP plan in the not too distant future. School is a really great place for Harry; he is one of the brightest kids in the class and thrives on the structure that school brings him. He is a very friendly child with a great imagination but he can sometimes get overwhelmed so the school allow him to take himself to a quiet space if he becomes over stimulated. The school also push to challenge him to achieve his potential and have embraced his love of things like chess and writing stories.
What is homelife like?
It can be hard at home sometimes to distinguish between Harry’s behaviours in terms of what is a meltdown and what is a reaction to being over stimulated. As Harry gets older he is able to recognise his own emotions better and he’s learning to manage these himself. It can be hard at times as he can run away if we are out for the day or can find it hard to sit still. When he becomes over stimulated he can lash out and be physical with us so we have to hold him tightly to ensure that he doesn’t hurt himself. When this happens he tends to be very remorseful afterwards and doesn’t always remember what just happened.
What coping mechanisms do you have in place for Harry?
Over the last couple of years we’ve tried lots of things and I have a better understanding of what sort of coping mechanisms work best for Harry. Things like ensuring we follow routine and structure really help him. If we are going out or going somewhere new, in the days leading up to the event we will talk to him a lot about what will happen, who will be there and what he can expect. We use lots of visual timers around the house and have a visual calendar so he can see what we are doing and when. Harry tends to have lots of questions so this timetable can help alleviate some of these.
What advice would you give to other families in a similar situation?
Trust your instincts as a parent. If something doesn’t feel right it probably isn’t. Don’t suffer in silence either – for us getting a diagnosis didn’t solve the problem but it enabled us to put things in place that helped. Find other parents who have been through similar situations. Being able to share experiences and advice has been absolutely vital for us as a family.
I would also recommend a lady called Hazel Smee who comes into your home and observes your child. She then shares her recommendations and advice for how to make things easier. We found her help and support invaluable.
There is also a charity called SNAP who really helped us to distinguish the difference between what was a tantrum and what was a meltdown. They provided tools and tactics for us to put in place which have been great.
My biggest piece of advice is to get as much information as you can and find what works best for you. Harry doesn’t know he has autism yet and we’ll cross that bridge when we come to it. What’s important for us is that Harry recognises that having autism doesn’t mean there is something wrong with him, it just means his brain processes things in a different way. He is so bright and friendly we have no doubt that he will do well in life. He is obsessed with animals and wildlife and I wouldn’t be surprised if he ended up being a zookeeper.
Read other parent stories here: https://drsonakaur.com/insights/
