“He doesn’t look autistic…”

June 12, 2015

The word ‘autism or autistic’ can be very emotive, especially for a parent whose child has just received this diagnosis. They and their child will have to live with that label for the rest of their lives. When Jesse was finally diagnosed with Autism Spectrum Disorder one year ago, it was a mixture of panic, relief and absolute terror for me but it didn’t only affect me, it affected the whole family. After the pediatrician assessment, I called my partner Kerry at work and told him.  I actually can’t recall how I delivered the news.  I remember a lot of crying and fast talking on my behalf and a lot of reassuring words from Kerry.  As a very dedicated dad, it must have hit him just as hard but his priority was keeping me calm.  He was very supportive and was my rock through the next few weeks as I came to terms with this daunting label our son had been given.  Kerry put it into perspective for me by saying, “don’t think of Jesse as autistic babe, it’s not something he is, it’s something he has”.  I still continually think back to the way Kerry rationalised it and it makes me feel better.

Telling family and friends Jesse had autism was never a concern for Kerry or myself.  We have both always been on the same page in this regard, which we have agonisingly discovered, is half the battle in most decisions relating to parenting Jesse. Family was an easy one, I’m lucky to have a strong network of support around me, I couldn’t imagine travelling this ASD road alone.  I told my mum, Jesse’s Nanna, and Kerry told his parents.  Nanna was extremely emotional when I told her, we were both sobbing over the phone but she was supportive and accepting.  I had confided in mum early on about the feelings and worries I had for Jesse, long before the diagnosis. She was just as relieved as I was that we finally had a direction to go in.

Kerry’s mum, Ma, was also very supportive and accepting but it was strange to me that right from the beginning, Ma referred to Jesse’s diagnosis as Asperger’s Sydnrome instead of Autism.  It was never a problem for me and I just figured it was her way of coping or even protecting Jesse.  It was only later on that Kerry admitted to me that his own personal feelings about the autism label and the stigma it carried had driven him to use the word Asperger’s Syndrome when telling his parents. They are both such loving grandparents, I guess he was worried how they would react when breaking the news, especially his dad, Jesse’s Pa.

Kerry and Pa are very similar – sensitive, practical and highly protective of their family. My experience with Kerry has taught me that if he or I are in an emotional situation that he can’t fix, it becomes completely overwhelming and I think this may have been one of those situations for Pa.  Jesse has spent a lot of time with all of his grandparents since he was born but he and Pa have a special connection.  For a long time after the diagnosis, Pa would not acknowledge or participate in any conversation that we had in relation to Jesse’s autism.  It never changed the way he interacted with Jesse or us, and he continued his unwavering support for us but I believe the diagnosis shook Pa to his core.  Still to this day Pa has never engaged in any deep conversation with me in relation to Jesse’s autism but I know he loves us all unconditionally and is very proud of his grandson’s achievements to date.  Pa and Jesse continue to cement their strong bond which is so important for both of them.

Telling friends was a little different and we used our gut feeling when it came to who we told.  Being ashamed or concerned about how friends would view Jesse was never part of the equation. You can’t control how people will respond or what they will think, you can only control how much information you give them to process the situation. At this stage in the game, I had done my homework.  I had exhausted most available on-line reading material so I felt comfortable knowing I could address any questions.  The one thing I was not prepared for was people’s reluctance to accept what I was telling them.  Jesse has always tried very hard to connect, communicate and socialise and because of this, was very quickly tagged as high functioning by many specialists.  These seemingly neurotypical (normal) behaviours made it difficult for friends to reconcile the fact that he was a child who had autism.

The many faces of autism? No, its just my beautiful funny little man.

The many faces of autism? No, it’s just my beautiful funny little man.

I wish I had a dollar for every time I have heard, ”He doesn’t look autistic, he looks normal” and “oh my kid does that, it’s normal”.  Such innocent throw away comments that come from a good place and are usually meant to support or make me feel better.  Don’t get me wrong, I don’t blame the deliverer in any way but they do stir a torrent of emotions in me.  After these or similar comments, I usually have an overwhelming need to explain all the difficulties Kerry and I face on a day-to-day basis.  This defensive response is then directly followed by a feeling of guilt because I quickly think of some of Jesse’s ASD affected friends and how much harder their families have it, which in turn leads me to be thankful for what I actually have.  This parenting gig is a roller coaster of feelings that truly never gets easier to ride.

These quick almost automated responses that come from friends or acquaintances in no way diminishes their genuine love or support but it is a reflection of the misunderstanding that most have when it comes to the word autism.  For some it conjures up images of children that are non-responsive, no-verbal and rocking in a corner whilst others reference scenes from the iconic movie “Rainman” starring Tom Cruise and Dustin Hoffman.  This highlights a consistent and emotional theme in the ASD world, specific labels within the Autism Spectrum – “Asperger’s Syndrome”, “High Functioning Autism,” “PDD-NOS”, “Classic Autism” or “Kanner Autism”.  These terms affect many families that I have come into contact with differently.  I have observed quite a love or hate relationship with these labels, some families embracing them whilst others rebel strongly against them.

My experience so far on this journey has taught me that every child with autism is so completely different and none of these labels fit perfectly or in any way define a specific child so I don’t put a huge amount of importance in them.  What is important is your support network and their understanding of your child.  I encourage you to be brave and open up, spread awareness and educate friends and family members.  It will only benefit you and your child in the long run.

2 Comments

  • Reply Michelle July 23, 2015 at 5:51 am

    I’ve just come across your blog, thankfully! We’re just starting our own journey, with our gorgeous boy, 2 years and 4 months, just being diagnosed. It came as no surprise so we’re just keen to get going. I’m trawling the Internet, as you do … There’s so much but a lot of it not relevant or helpful. Great to come across someone in a similar position. I look forward to adding more of your posts.

    • Reply Kelly July 24, 2015 at 12:24 am

      Thank you Michelle xxx That’s how I felt when Jesse was diagnosed, lots of nights trolling the internet. It makes me think of a funny quote I saw the other day ‘A worried mum does better research than the FBI’…. so true 🙂 I think its so important to find people that can relate to you on this journey and that’s exactly why I started ‘Jesse’s Mum’, so thanks again.

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