I have a few friends who are at university at the moment. They all know that the next few years are going to be pretty full on but they throw themselves into their chosen field of study because they know that at the end of it – they will be one step closer to achieving success. They know that the sacrifice will pay off eventually and it will all be worth the hard work and long hours.
So my friends make the wise decision to arrange their social life around study and learn to turn down invitations that either conflict with their upcoming exams or might possibly eat in to their necessary research/study time.
They become super-focused and their course seems to completely consume them and be their main topic of conversation. They know that if they were to fail an exam or a unit that it wouldn’t be the end of the world but that it would put them one more step behind and that to catch up again it would require double the effort and time. They know that it’s just not worth it.
They know better than to push their responsibilities to the backs of their minds in favour of having a good time now. And they also know that it won’t be like this forever so they push through so that they can not only succeed but also flourish.
I admire them so much for their dedication and resilience.
It’s been suggested to me that I spend too much time thinking about autism and talking about autism and researching/reading about autism and that I would be better off spending the time that my children are at school doing something - anything that is separate and unrelated to autism. Because apparently – I have allowed autism to consume me and allowed it to depress me, and that it has made me not a very fun person to be around.
And I understand why people would think that way but honestly, as unfortunate as it is that I’m seen that way: I know that this kind of thinking only comes from those who don’t live a life like ours.
And explaining it to people who already have their minds made up about what they think autism should look like or how much time I should dedicate to it daily is as futile as explaining what childbirth feels like to a man.
People can empathise, they can say all the right things and read all the right literature that they can get their hands on, but they will never ever truly understand it unless they live with it 24/7 as we do.
We were never given the option to ignore autism or downplay the difficulties that it often presents because this is our life. We aren’t afforded the same luxury of pretending that it isn’t really all that bad. Honestly: I would seriously LOVE to step away from this life for a few hours a day but I know deep down that to do that I would be putting myself in a position where I would surely fail the afternoon exam.
And yes, like a Uni student who chooses the good life over responsibility – life wouldn’t come to an end – there wouldn’t be an unrepairable problem if I laid off the intensity, but it would definitely put me further behind in the sense that I would be unprepared and ill-equipped to deal with what may or may not be thrown at me.
Life with autism isn’t a series of multiple-choice questions that you may be able to fluke and guess all the right answers to. Autism is extremely un-predictable. And autism is a life-long neurological disorder – not something that will be over after a few dedicated years of study. Information regarding autism and helpful strategies is ever changing and rapidly advancing and I don’t want to just scrape by in these life exams – I want to get high distinctions and really know my stuff so that I can give it my kids my absolute best shot. I owe them that!
I don’t ever know what kind of drama I’m going to get as I drive to school each afternoon to collect the children. It is usually intense and it highly overwhelming but it is what it is so I need to be prepared.
And while I’m on this subject, I’d like to ask how many of you have met my youngest son Lucas?
See this little brown eyed smiley boy? He is 6 years old and thriving in his very first year of school. He is reading and spelling above his age level and is an absolute delight to live with.
He was diagnosed with Aspergers Syndrome last year, which places him on the higher functioning end of the autistic spectrum.
In fact – his presentation of autism is so mild that I honestly don’t know if I would have even have noticed his quirks at all if his older brother wasn’t already diagnosed and I therefore knew which indicators to look out for.
Lucas has only ever had one meltdown in the supermarket. I can take him almost anywhere without a problem. He is obedient, agreeable and generally unaffected by loud noises, crowds and a lot of activity, He doesn’t require the same level of routine and structure that his older brother does and he transitions to new situations extremely easily. He is generally an absolutely easy child.
And a lot of families have a child with autism that presents in a similar way to Lucas. There are a lot of kids just like him out there and that’s wonderful!
But unfortunately, there is a huge misconception that all children on the spectrum are like Lucas and that parents like me who write about major supermarket meltdowns, screaming matches, violent behaviours and family crisis are just trying to extract sympathy at the expense of their children.
We are accused of painting an incorrect and highly inappropriate picture of autism and that we are a disgrace to the autism community. That we are cringe worthy even.
And I understand that. Honestly I do. Because if both of my boys were like Lucas, I would probably also feel the same way were I to read one of my blog posts about a day in the life of Harley. If I was only blessed with a quirky child who didn’t struggle with every little part of the world that they are forced to live in – I can understand that my writing seems overly woeful and self-focussed.
But you see, we also live with a completely different and more difficult presentation of autism as well. We have Harley who is plagued by anxiety, major sensory issues and OCD and I know that there are also a lot of parents out there who deal with a child who presents exactly like Harley. They would love to have a Lucas but instead they deal with a lot of the same stuff that we do.
These parents are also misunderstood and judged both by their peers and families and even sectors of the autism community and also know that unless you live with the major strife, angst and tension that we all do –you really have no idea and therefore no right to pass judgement. Yet they are judged. Frequently.
These are the families that I mostly write for. These parents who throw their hands up in the air screaming “WHAT NOW” every time a new hurdle presents itself. These parents who are at their wit’s end trying to stop their family from crumbling before their very eyes and these parents who would give anything for a full night of sleep.
These are the parents who write to me thanking me for showing them that they are not alone and that there is hope and the families who also endure harsh judgements and well-meaning but hurtful advice.
Truthfully: we honestly thought that by age 9, our son would have grown out of the major meltdown stage. But they don’t seem to lessening in frequency or intensity and we thought that the older that he got – the easier that he would become because EVERY ONE kept telling us that.
But you know what? He’s not! He’s really not! Sure there have been major breakthroughs and massive progress (all which I’m truly grateful for) but when you’re looking at the bigger picture we still have a very long way to go.
And at the end of the day it has had to come down to this for me. (And I apologise in advance if this comes across harshly as it’s not my intention):
If my writing and my accounts of our life offends, upsets or annoys you – by all means, click on a different blog. I cannot write about someone else’s reality, I can only share things as I see them. I do not write to cause controversy, I do not write to sensationalise my life and I definitely do not write in an attempt to procure sympathy for myself by describing every single supermarket meltdown.
This. Is. Our. Reality.
If you think I write unrealistic descriptions of autism as YOU know it, you are allowed your own opinions and I will probably never change your thinking so I’m not going to try to. But I’ll leave with a quote from one of my favourite writers Stuart Duncan who is a father of a child on the autistic spectrum because it pretty much sums where I’m coming from perfectly.
“Autism is not an opinion, It is not politics. It’s not religion. It’s not about you or me and it’s certainly not about you versus me”.