Parenting is a tricky subject at the best of times, with constant ups and downs. The toddler and teenage years seem to be particular highlights for testing of parenting skills! Stephen (who has a rare chromosomal disorder and autism spectrum disorder - ASD) is the eldest of my three children, so I haven’t done parenting a teenager before. There is no doubt that Stephen’s autism and intellectual disability add extra challenges, but sometimes I am so fixated on his disability that I forget that Stephen is growing up and experiences many of the same things as a "normal" teenager.

Sensory Processing Disorder

One the things that every parent of child with ASD needs to know is that puberty can set off new sensory triggers. Like Stephen many children with ASD have sensory processing disorder, this means Stephen’s senses do not ‘work together’ the same as ours. Stephen feels, sees, hears, tastes in a different way than we do. This also affects his movement and balance. All areas of life are impacted from eating (only eats certain textures), to sleeping (he needs deep compression hug to help relax him at bedtime), to how he learns (he needs a quiet corner). He cannot ‘screen out’ noise like we do and gets overwhelmed in busy noisy environments. From what we see everyday, there is no doubt that certain noises cause Stephen distress and I think some form of pain. Examples of this would be a baby crying, a dentist’s drill, a hand dryer in a public toilet and many more.

Since we became aware that Stephen’s senses are different than ours, it has helped us understand some of his reactions. And we have tried to support him with preparation and avoidance of certain trigger noises. It had settled down to a certain degree and he could manage many new environments well. However puberty and all those hormones have sent poor Stephen’s system into sensory overload again. Things that we thought he had got used to are suddenly causing him distress. E.g he has been pretty good at getting his haircut in the last few years and had gotten used to the noise of the clippers and noise of scissors. Suddenly it is like the noise is hurting him and he cannot tolerate near his head at all. From my experience it seems sensory processing disorder spikes during toddler and puberty/pre-puberty years. Stephen is 14 and I know I have a few years to go with teenage years but I am looking forward to (hoping) this sensory stuff settling down again in the future!

Sleep

Stephen has never been a good sleeper but recently he is waking at various times during the night and early in the morning. From talking to other parents and from what I have read, we are not alone (I know it does not fix it but it really helps to know others are experiencing the same thing) it seems many young people with ASD find it difficult to move smoothly through the cycle of ‘normal’ sleep. Needless to say, lack of quality sleep affects not just Stephen, but the whole family.

I was chatting to one of my neighbours about sleep or lack of it, when it struck me that I need to think about what ‘normal’ teenagers do and that all of Stephen’s behaviours are not necessarily linked to his disability. My neighbour was telling me about the amount of food her teenagers were eating and it got me thinking that maybe Stephen’s waking up might be that he is hungry.

Stephen has always been a ‘picky’ eater and he does not like eating. Anyway I started giving him some extra snacks during the day and it seems to be helping. The other thing I have used is melatonin and that seems to really help settle his sleep pattern.

Meltdowns

I was also telling my neighbour about Stephen having complete meltdowns and that in many cases I could not understand what was upsetting him. I was busy analysing that it must be Stephen’s frustration because he cannot express himself with words. This may very well be a cause, but my neighbour reassured me that many ‘normal’ teenagers also have meltdowns over what seems like nothing.

Lessons

I am learning that yes having a teenage child with ASD does pose lots of challenges, but so does having any teenager. Stephen is teaching me about patience, understanding and active listening. Stephen has a great sense of humour and he also reminds me of the importance of laughing and keeping things in perspective.

On the positive side of puberty, I have to share with you that Stephen has acquired more language from age 12 to 13, than at any other stage of his life!

Best wishes as always,
Avril