When people ask me “What exactly is autism” I usually answer with this: “A complex neurological wiring that presents differently in every single individual on the autistic spectrum”.
Because that’s just it – there is no one autism. It differs greatly from person to person and whilst they share similarities, each individual is unique and has their own strengths and weaknesses. And too often, people compare what they know autism looks like on someone’s daughter, son, cousin, nephew, niece or friend that they know personally and assume that unless their child is exactly like that – there is no chance that there could possibly be a spectrum disorder lurking in their own child.
But there are hundreds of undiagnosed kids out there. I see them everywhere I go, I have acquaintances with kids who desperately need evaluating but I can’t say anything because its not my place because I am “just a parent”.
Not as in only a parent, but as in not qualified to diagnose autism.
And thats ok because that’s true. But I know autism from a different angle than a diagnostician does, and a different angle to how a teacher might see it and I experience different elements of autism to what a textbook teaches them. I’m not a professional on any level but I know how autism looks in my own family. And that’s definitely worth something.
I know that how my boys appear in public and what we live with are two completely opposite things but that even in those moments where the untrained eye wouldn’t necessarily see autism – I still can.
I can look at my boys across a playground and see subtle things like that tiny moment of hesitation when they are spoken to by another child, the way that they move their bodies in either sensory seeking or sensory avoiding ways and the facial expressions that convey their struggles to me. And this is not just because I am their mother, but because I have learned what to look for so therefore I can no longer not see the autism.
And I can also see it in my friend’s children who are already diagnosed on the spectrum. I see those little quirks, hear those speech anomalies and observe the giveaway telltale signs that would be easy to miss if you didn’t know what you were looking for, but those kids also hide it very well in most situations. And often not even deliberately.
Even though its the doctors and health professionals who play a huge part in diagnosing our kids, they also need information and data from parents to complete their diagnosis, so what we observe about our children and report to them is an important part of the bigger picture. We do not have the final say but what we bring to the table DOES matter. We need to work together to achieve success in getting our kids what they need and deserve.
I know a reasonable amount about autism from living with it every day and from being given remarkable first hand insights into the wonderful workings of the autistic mind so it makes sense that I also notice indicators in other children almost everywhere that I go.
I see children who sit with their legs in the “w” position while playing and children who walk on their tip toes frequently. I read about parents who have children who have been terrible sleepers for years despite their best efforts to make it work and my heart breaks for those families because I feel their pain all too well.
I hear about kids with high anxiety and debilitating panic attacks, and about the children who freak out if their routine is altered. And stories about kids who can’t stand to have different foods touching on their plates or refusal to wear a certain fabric and wonder if there is something more going on.
I notice photos of children who refuse to look at a camera, I see their awkward smiles where their eyes are glazed over and absent and I observe behaviours in public places from a whole new perspective since learning about the sensory issues that children on the spectrum have.
I am often told stories about the cute things other people’s kids do like lining up their toys or arranging their belongings alphabetically, in colour order or in patterns and big loud clangy alarm bells go off in my head. If someone tells me about the odd things that their child collects or shows me photos of the child immersed in a special interest of theirs and appearing unaware of their surroundings or other people because they are so engrossed, I have trouble not shouting: ‘ding, ding, ding’ in their face!
And while its true that none of these above mentioned quirks alone mean that the child necessarily has autism , they are all indicators of autism that are often explained away as other things and might one day need to be explored further. And it saddens me when a parent is told by another well meaning friend (or worse; someone who works in childcare or some branch of medicine) only what they want to hear instead of encouraging them to follow their gut instincts.
Sometimes, when a parent tells me about unusual things that they have noticed about their child whom I already suspect could be spectrummy, I have had to learn to listen, smile and subtly suggest that if they are concerned that they should seek out a professional opinion. Because at the end of the day, my opinion is just that; my opinion. I would hate for my word to be taken as gospel when a child’s future is at stake. But so many parents DO take reassurances from friends, co-workers and sometimes even Doctors who don’t explore concerns properly.
I have had a few friends tell me things about their child that concern them only to have them finish their sentence with: ‘but it’s not autism, because my child is not like yours’ or “I know someone who works in ‘such and such a place’ and they told me that he/she is normal”.
UGH! If you’re worried about hour child’s development in ANY area, get your child assessed properly. And if you’re not being taken seriously but still have strong concerns: fight for your child!
Stand up and push until you get the answers that you need! Be the advocate your child needs.
In cases like this, I usually ask my friend if they think its would be better to ask the question and have it explored and dispelled rather than take someone’s word for it just because they don’t want to cause waves and end up with a child who needs so much more help than they would have if it were picked up earlier.
I then follow with my brain tumour story to illustrate my point.
I had a numb face, an awkward gait, was extremely clumsy and losing my hearing and the biggest indicator was something that I couldn’t describe in any other way than the non-specific “something just doesn’t feel right”.
I was seen by 7 different Doctors who gave me answers like: sleep deprivation, post natal depression (Harley was only 2 weeks old), facial palsy from pushing during childbirth and the good old ‘stress’ diagnosis but it wasn’t until I followed my “gut” instinct and demanded further testing that the 5cm tumour was found growing dangerously close to my brain stem. So if I hadn’t have followed my gut instinct and listened to well meaning friends and some Doctors who were willing to write my concerns off without further exploration, who knows how this story would have ended?
I get that this is a touchy subject, I understand that this may be confronting to read for some people and I’m sorry if I’ve hurt anyone. This is truly not my heart at all.
And no, I’m not writing about anyone I know personally here, I just know how much difference early intervention makes in a child’s life and I’m passionate about children receiving whatever help they can so that they can live their best life. Yes – we’ve had many ups and downs here since my boys were diagnosed but I KNOW that now I am doing everything in my power to give my kids the best start in life.
I used to wonder if things would be better if we’d never found out and sometimes wished that I’d kept my head in the sand for longer because its often all too confrontational and downright hard, but now I know beyond a shadow of a doubt that asking the questions and requesting evaluations was the best move I ever made for my boys.
Because like most parents, I really do just want the very best for my kids.
They deserve that.