Being a parent of an almost teenage son with ASD (autistic spectrum disorder) I have quite literally spent years biting my tongue about autism and my views on autism. Why biting my tongue? Well for one I don’t like to offend, secondly some people have such closed minds I’d be wasting my time and lastly I never have the time to enter in to a debate because my lifestyle dictates I am always running from A to B.
Recently I chatted briefly to someone who knows my youngest son is very shy (he’s almost 3) and that I have a few little concerns about him, like I’ve had with all my children and with the exception of 1 all of my concerns have turned out to be just part of their toddlerhood and very normal (I’m just on high alert after my previous experience). Anyway this person said to me ‘ very good to hear your little one is going to creche at last, otherwise I was worried for you that he could have turned out like your eldest son, with the same problems’. Then continued talking on another topic. This of the cuff comment was not meant to hurt me, not at all, this person was trying to show concern. Inside though I crumbled and I wanted to shout at their ignorance , and tell them how dare they pass judgement on my children and how dare they insinuate that how my oldest son was brought up ‘made him autsistic’ and for their information said son had attended nursery from an early age. Also my eldest son is actually a very awesome young man who I love dearly and is no less awesome for having ASD.
Sometimes peoples of the cuff comments hurt far more than they ever realize. Unfortunately, stored away in me I have an huge huge catalog of everything that’s ever been said to me with regards to my childrens disabilities. I know the healthy thing is to let them go but I find it impossible. I can’t forget so I try to forgive instead. It helps but it doesn’t really heal, not for me anyway, I liken it to grief, you can’t make it go away but you can learn to live with it. So this is a cathartic post for me, a release of some of the pent up things I’ve always wanted to say in relation to my son, and in relation to his autism.
Hopefully it will dispel a few myths along the way too…
Firstly, a child isn’t ‘made’ autistic by the parenting he or she receives. The whole ‘frozen mother’ thing has long been disregarded by science and research. Even with out science, common sense can surely work this one out. Sadly some babies for whatever reason are shown little love, some are even badly neglected, does this result in that child then being autistic? No, not unless that child was born with autism and would have developed it anyway. Of course environmental factors can exacerbate or lessen the effects of autism, but autism won’t develop in a child who isn’t autistic. Other problems may occur as a lack of love or parenting but not specifically autism.
For the record my son was my 3rd child, born after 2 daughters, I absolutely cherished him as I have all my babies (I’ve certainly never been a frozen mother). He never lacked in attention, was always very loving and he attended nursery from an early age. He did not lack love or socialization. From 9 months old I had concerns about his development on a number of levels and had approached my GP, back then it was deemed excessively early for a diagnosis but research has now proven what I knew all along, that it is possible that signs of autsim can certainly be detected very early in babies. Subtitles often and they don’t always lead to the child being autistic but they can be warning signs. My son has always had all the co morbid conditions that very often exsit with ASD (food allergies, hypermobility, dyspraxia and speech and language disorder ) This is what I’d picked up on, it was more than just intuition, although I believe that does play a part too sometimes. I hoped and prayed I was wrong but I pursued tests and help, by 2 yrs old my son was in receipt of help .
My second gripe is that if my son spent a week with different parents he would not come back a ‘different boy’. Different parenting would not ‘cure’ my son. If a set of different parents would eradicate all the problems my son has as a result of and associated with ASD I’d gladly hand him over for his own benefit. However as superior as many people have presumed their parenting is to mine, they would not ‘cure’ my son with it. I’ve heard people mutter this about children with ASD before, that if it was their child they’d be able to ‘sort their behavior out’ utter rubbish!
Thirdly, he is an individual in his own right, he is not ‘like’ other autsitic children. While he many display some similar behaviors he is not like that other child you know of with autism, well no more than I’m like that other woman with blonde hair that likes to wear long skirts that you know. Often I’ve been told ‘oh I bet he’s never affectionate or gives cuddles, like my friend of a friends son who is autistic’. My son is actually overly affectionate and always has been, he can’t differentiate between when this is appropriate and when not, this results in him cuddling strangers sometimes.
The whole Rainman film was a very mixed blessing, while highlighting ASD/Aspergers it also seemed to make a lot of people think that having autism always brings with it genius of one sort or another. My son has what’s called low functioning autism in that he has severe learning difficulties as a result. So fourthly, Autism/Aspergers does not always equal eccentric genius.
Fifthly, Autism is not a made up condition to excuse away bad or unusual behavior. Although admittedly I kind of wish it was that simple
Lastly, well I could write a long list all about misconceptions about my son and autism but I won’t. I think the expression ‘when you’ve met one child with autism, you’ve met one child with autism’ explains it all.
So I’ll leave you with this link to some new information regarding autism, it talks about how siblings of older brothers or sisters with ASD may be at risk of also having ASD, suggesting the strong roll genetics plays in autism . Science is finding it could well be something to do with genes and things that occur in pregnancy (no not drink and drugs) although their has been research in to the affects of hormones/pessaries used in pregnancy to induce late babies.
Please do take a read as these are relatively fresh findings and blow away a lot of outdated theories and cobwebs surrounding autism.
I have long held a personal belief that (in very simple terms) almost like cancer, many of us are born with the gene for autsim and only in some of us does this get turned on ,in utero, (not by environmental factors like bad parenting or lack of love post birth) by genetic or hormonal factors. The same factors/genes that bring the co morbid conditions of allergies, hyper mobility etc. This is not scientifically proven yet, these are my personal feelings after SO much reading of researches (that I do daily, I am not obsessed but because my son has autism it is part of my life). I may be proven wrong, but whatever the outcome I hope it leads to the cause being found and I hope it helps the whole general understanding of the condition. Answers won’t change my scenario or the fact that my son has ASD but more knowledge would empower future generations . Science could certainly clear up a lot of the mystery surrounding autism .
Ultimately science could help the public’s perception of autism and hopefully help peoples acceptance of autism as a very real condition. Unlike some other conditions, outwardly often there is no sign or physical traits that suggest a person may be autistic and I think this often only serves to hinder peoples acceptance and understanding of autism. If someone tells us they have an illness like cancer for instance we don’t ask to see proof or expect to be able to just tell. They may look quite well on the outside, it’s similar with autism. It can be an invisible disability because outwardly everything looks as we’d expect, yet inwardly, without the use of MRI’s we can’t see how the brain is working.
It is worth remembering that when it comes to autism that acceptable behavior and understandable behavior are not the same. However when you try to understand the behavior, i.e a meltdown induced by a tiny detail you may find you’re more able to accept the behavior. I follow Allison at OAG consultants on twitter and she tweeted this recently. It really makes a lot of sense as do all of her tweets relating to autsim. I believe understanding is the key to gaining acceptance for our children or loved ones with autism. Raising awareness and understanding of ASD is such an important part of gaining acceptance. A lot of info about autism is available on the net but often people only seek it out and read it if it’s relevant to them, so it doesn’t always reach mainstream targets. That is why every so often I use my blog to write about SEN’s as I know my followers aren’t all SN (special needs) specific readers.
As a disclaimer I am not a scientist , this should be blindingly obvious although I wish I’d studied medicine, it fascinates me. Secondly I’m just sharing what I’ve read and my opinions and nor am I anything to do with OAG consultants, this is NOT a sponsored post.
I just wanted to get this of my chest and my blog is the perfect platform for me. I’d love to say this stuff out loud to people sometimes but I never have the time. If this helps dispel just a few myths surrounding autism for just one person then that is great. If my time was not so taken up with my family and other projects then in another lifetime I would spend a lot of time campaigning for the rights of people with autism and other disabilities for awareness. As it is though this is as much as I can do for now and getting this of my chest at long last has made me feel just a little better
Below are a couple of pics of my lovely boy who is now a lovely young man