The Challenges of Spotting Autism in Siblings

Whether I currently have one or two sons with autism, is waiting to be confirmed. I have an eight-year-old son whose autism was diagnosed at age three, and a second son who is strongly suspected to have autism but remains undiagnosed at age four. You may think that as a mother of an autistic child I’d have quickly and easily spotted the second child’s autistic traits – I thought that would have been the case too. But I’ve found that already having one child with autism actually created a whole set of challenges and distortions that made it a lot harder for me to recognise the autistic traits as possible autistic traits, in the second child. It took an autism specialist and a group of kindergarten teachers, to pick up on things I’d seen but had “mis-categorised.”

I’ve been reflecting a lot lately on why this is the case – how is it a mother like myself who is so emotionally and intellectually immersed in the world of autism, misses the signs in her very own son? I’ve reached some understanding of how this came about, for me at least, and quite possibly the same factors are at play in other families like ours.

Free use image.

Free use image.

It starts with the fact that my eldest son is my primary reference point for autism. The symptoms my eldest son has – and perhaps more importantly, their severity – blinded me to understanding what was going on with his younger brother: although the younger brother showed some unusual or concerning behaviours, to my mind they fell well short of actual markers for autism. I couldn’t help but compare the two children.

This is tied up in a second issue: I have only ever raised an autistic child. I don’t have personal experience with raising a child who went through “normal development,” I have intimate experience with the development of a severely autistic child though and comparatively my younger son’s development seemed to be going very well. As time went by I did start to notice significant differences between him and his unrelated peers, but there were two other factors at play that lead me to largely dismiss my observations as relevant to autism:

(1) I thought my younger son was simply copying some of the more concerning and unusual behaviours from his autistic older brother, such as the humming endlessly while he ran in circles. Indeed, when I brought up this concern when he was about two with a speech therapist who was assessing him at even that early stage, she also felt it must be a copying behaviour that would go after he’d spent a lot more time at kindergarten amongst more “normal” peers. Similarly my younger son’s seemingly delayed social skills; something that could be explained away by the daily presence of an autistic older brother whose own development and social skills were themselves so very different from the norm. We all know how influential an older child can be on their younger siblings, which made it easy – alongside the next factor I’m about to address – to explain away the younger sibling’s oddities.

(2) I was fully aware that I “see” autism everywhere. Just like anything you become hyper aware of, suddenly it is everywhere you look because your brain is focused on it and searching it out. If someone tells me about their concerns with their child’s development or behaviours, my brain starts by considering whether autism might be a relevant cause (it rarely is, but the point is my brain heads there first). Or if someone is discussing disability advocacy, my first reference point for what services are needed or lacking is to run the issues through an autism-experience filter, and this is completely natural and understandable considering my most intense interaction with disability experiences is through living with my own son. But because I am fully aware of this tendency of mine, I am also weary of jumping to “autism” as the answer or explanation for everything. So when I saw autism-like behaviours in my younger son, I chastised myself for thinking it might be autism. Instead I – and others who knew my son well – declared that he was just strong-willed, stubborn, independent… nothing pathological, just a particular personality type.

But as more professionals and teachers became part of my younger son’s life – and the same concerns got voiced across the board, and the concerning behaviours and traits weren’t lessening and became more intrusive, and the professionals in his life step-by-step ruled out parenting or other factors as causing the problems – I couldn’t dismiss autism as an explanation anymore. Autism does tend to run in families, we always knew this was a possibility. I just thought – for all the reasons outlines above – that autism wasn’t the explanation for my youngest son’s challenges.

So here we are, facing the start of that new autism journey. We’ll be just fine – we know the system well, we know the interventions that will be employed and have the experience and dedication already to make the most of them. We already love and live with one autistic son. This is not new territory, even if it will take a bit of getting used to. So even though my older son’s autism created various challenges to identifying the same base issues at play in his brother, I can confidently say that those experiences with his older brother will ultimately benefit my youngest. I’ve been through raising a very difficult autistic child, in comparison his quirky younger brother is a piece of cake. We already know we can handle this.

Though we’ve had an autism specialist say she does see mild autism in him, and she’s told us she’d be happy to go through the full diagnostic process if we find we need a confirmed diagnosis to access services, for now we’re doing OK without that final step of confirmation. “Suspected autism” gets us the services he needs right now, and that’s what matters. One day we’ll know for sure either way, but there are certain things a diagnosis could never change; I’ll just keep on loving my two boys just the same – they’re quirky and clever and independent and stubborn, and best of all, they’re both mine. I wouldn’t change that for the world.

Posted in Diagnosis, Parenting an Autistic Child, Siblings of Autistic Children | 11 Comments

Information on NZ Political Parties & Disability, in the 2014 General Election.

It’s an election year here in New Zealand. Last time this event came around I created a post for each political party, looking at their attitudes, priorities and promises when it came to disability (and especially autism) in New Zealand. … Continue reading

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The Ever-Battling Narratives of “The Autism Parent.”

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Today I was contacted by a woman here in New Zealand, who wanted to share her research project with me – specifically she wanted to hear my thoughts on what she had written. The project written by Catherine Rivera-Puddle, is entitled … Continue reading

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Should Special Schools Be Shut Down? (Includes Poll)

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Should all special schools – schools that specifically and exclusively cater to children with special needs – be shut down? My personal experiences, and a look at the reality of what the two types of schooling have to offer, once made me … Continue reading

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Isolation

One of the most enduring experiences for me as the mother of an autistic child, is a deep and growing sense of isolation. No, not just a sense, a reality of isolation. There was a time when the reality was … Continue reading

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Surviving the Ignorance and Indifference of the Bureaucracy.

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A reader recently asked me how I keep going in the face of the exhaustion and frustration of dealing with people who stand in the way of your child receiving adequate support and services. Her question had other facets to it … Continue reading

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Support “The Sewell Foundation”? No thanks.

There has been a lot of media hype recently about “The Sewell Foundation,” and the family behind this charity. They got their story on the TV show Seven Sharp this week, and have had yet another article published about them on Stuff.co.nz. … Continue reading

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Justifying Murder?

I’ve seen a recent resurgence of my fellow autism parents being accused of justifying murder. They are accused of justifying murder because they bring up the issue of inadequate family support when faced with stories of parents murdering autistic children. The claim against … Continue reading

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Guest Post at Not PC: “In Fear of Vaccines?”

Writing about the link (or rather lack of a link) between vaccines and autism, always brings out passionate emotion. As a general rule I’ve chosen not to confront the topic head-on through my blog, for the reasons outlined in a post I did … Continue reading

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Failure of Support Services – A Friend in Need.

I have a friend who has been put in a situation that is frightening and unacceptable. This friend is an adult with autism, who lives here in New Zealand. She qualifies for support to help her live independently. But that crucial … Continue reading

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