Our son and his autism.
In this blog post I talk about our eldest son, Bass's autism journey. I go through in a chronological order all the moments that contributed to his autism diagnosis.
I really hope it helps any parent, who either have an autistic child or in the in-between stage of awaiting a diagnosis or a parent who is just interested to learn more about autism.
As we know autism is a spectrum so this is obviously personal to our autistic journey with Bass but I hope you find it helpful and useful.
In this email I've given a little synopsis of my autism talk:
Bass's birth was long, complicated and emotional.
All my births were pretty horrific if I'm being totally honest with you. On paper I've been told they were pretty straight forward bar Bass's. His was different. It was long. It was complicated. It was emotional. Bass's oxygen levels dipped and I have always wondered if this made him autistic or contributed to his autism in anyway.
I wouldn't have thought this or even questioned it but whenever we have spoken to any professional about autism and Bass, the first thing they have asked is, how was his birth? I've always found this quite telling. They don't seem to elaborate or say anything though so I'll never know and to be honest it doesn't really matter or change anything but I have found this interesting.
We were edgy parents.
We were anxious new, first time parents but Bass was an anxious-inducing baby! He was edgy! But thinking about the chicken and the egg, was Bass edgy because we were anxious or were we anxious because Bass was edgy? Who knows but having had three other children Bass was certainly the most tricky. He slept poorly and absolutely hated anything going over his head.
Late to reach his development milestones.
Bass was late to reach all his developmental milestones. He was late to crawl, late to walk, late to speak and because of this they wondered if he had any hearing problems so he went for a hearing test when he was 18 months. Weirdly this was the first sign of his dyslexia. There was a moment where he hadn’t grasped the instructions so they thought he was completely deaf but he had just misunderstood what was asked of him. The lady said: “When you hear a beep put a red counter in the red train.” We all heard the beep but due to Bass's dyslexia he hadn't grasped the instruction so didn't do anything - we all thought oh no he has a serious hearing problem but actually once he did he was off and the hearing test came back all clear.
Weaning was difficult.
Bass was and is an extremely fussy eater. He would often gag or be sick at mealtimes. Wouldn’t tolerate things on his high chair like a spec of avocado or a pea. Naturally I compared him to my friend's babies, who seemed to eat everything and anything. They didn't mind getting messy and wouldn't vomit. I realised something was wrong and it was Bass’s biggest autistic trait, his anxiety around food.
We had to leave soft play classes regularly.
I remember vividly having to leave a ‘Gymboree’ soft play class early because Bass thought it was really funny to push every other child over like dominoes and by the fifth apology I felt I just had to leave. I also found that Bass didn't conform to the class's natural routines and regulations - he often didn't want to form part of the circle or sing the songs. He was much happier doing his own thing.
I worried if Bass had any friends.
Bass started nursery and interestingly like I had a 6th sense my first question and worry was always if Bass had any friends. Like I knew that he had a problem with his social communication. He went to a Montessori setting and it really suited him. It was structured and helped his anxiety but he was very much in his own little world.
Always happy to do his own thing.
Bass has always been happy to play on his own and do his own thing. He is very much in his own little world and we have found it hard to feel connected to him. However, when he was little he did like to suck his thumb and touch my hair - I think he loved the feel of it.
He played for hours and hours with his Brio train set.
Bass would play with his brio train set for hours and hours almost like he was meditating. Humming to himself. We now joke that Bass should have been an only child! He was so happy being on his own playing with his trains. He now has to contend with three siblings and they with him.
He hid in the loos crying.
In Reception Bass found lunchtimes and the dining hall really difficult. He would often be found in the loos hiding and crying - it was really heart breaking. He hated the smell of the lunchroom and the sounds of the cutlery - this is where his anxiety around food developed further. The school created a ‘Nest’ at lunchtimes in the library for him where Bass could go and eat and play on his own. At this point I realised Bass wasn’t like the other children - they would shout ‘hello’ walking to school and he wouldn’t even blink at them.
Speech and Language appointment.
Due to his eating not getting any better we had a Speech and Language therapist appointment for Bass's dietary issues. She suggested Bass might be autistic - he was 6 years old. I went home very upset. I was very very sad that he might be autistic at this time. For me it was the lack of feeling connected to him. I so desperately wanted to feel a connection with him and I wrongly assumed I would never feel connected but I do!
First autism screening deemed not autistic.
At 6 years old went for his first screening where he was deemed not autistic - didn’t tick enough criteria. We were convinced he was but took the professionals advice.
Diagnoses with ARFID - Avoidance Restrictive Food Intake Disorder. Realised this was a very strong indicator of Bass's autism. To put it starkly Bass has never had fruit or vegetables in their purest form. He has and still does have pureed fruit and vegetables. We have beaten ourselves up a lot about this one the years. We have tried starving him, getting a super nanny in etc etc - you name it we have tried it. We now realise you will never get Bass to eat anything he does not want to eat. If it was carrots or starve, he would starve. Bass is dependent on Ella's brown pouches - if these go out of production I'm setting up a similar company!
Paediatric consultant thought Bass was autistic.
We recently went to our local GP and then a paediatric consultant about Bass's food and wanted to get his blood checked. While there he thought Bass might be autistic. Sometimes the older children get the autism becomes more pronounced. We have always thought he was.
Bass's Autism diagnosis.
Bass was diagnosed when he was 10. A huge sense of validation and such a positive thing for Bass. We have tortured ourselves for years thinking if he was or wasn't. Now we have his diagnosis he can be supported and understood even more!
What are some of Bass's autistic traits?
Bass’s speaks only when you ask him a question. He doesn’t like any form of physical touch or giving cuddles. He often shows no emotion and looks very serious. Bass often looks serious and confused if you say something funny. He takes everything you say quite literally and speaks in a monotone voice.
Bass absolutely hates transitions - going from one place to another and that might be just from the living room to the kitchen or London to Yorkshire. He doesn't like giving eye contact and his routines are very routine! Bass has to put his snack into his bag and won't believe you if you say you have done it. He has to put his bag on before he gets in the car even if the car is only two metres away. I have to do his toast in the mornings for example too.
My conclusion (it's positive!):
Bass and his autism can and has dictated our whole family life. We do a lot to placate Bass’s autism, which the other children don’t get. A lot of our routines and systems have evolved because of Bass BUT (and it's a big but) Bass has made me a better mum and us better parents and our family better.
I want to say it again. Bass has made me a better mum. Your child could literally do anything and everything and I wouldn't judge your child or you for it. He's made us less judgemental and more kind and forgiving and I love everything about his autism for that.
Since his diagnosis our family life has got better and better. We are all even more understanding of him and I feel we have been welcomed into this fantastic autistic community where they see a diagnosis as a truly positive thing and I agree. Bass is Bass and we love everything about him and will continue to support him forever and ever!
I want to make his life as easy as possible now.