Getting an Autism Diagnosis and the Global Politics behind Autism.
An Autism Diagnosis and what to expect really.
Getting an autism diagnosis is a long and arduous battle. For my son it took from the time he was seventeen months old until he was three years, just to confirm what I already knew by then.
‘Your son is on the autistic spectrum. In the mild to moderate range…’
Back in the day I didn’t really grasp the enormity of this diagnosis. I was still numb from the shock of losing the son I thought I had. It seemed surreal to have one little boy for his early life and then for another one to emerge. So in order to cope with the transition I convinced myself that mild to moderate autism was only going to mean slight issues for my son.
Then as is common when you are taking on the enormity of such a diagnosis I got the notion into my head that if I pushed myself hard enough then I could help my son enough and he would outgrow the diagnosis. Obviously I was still in denial and coming to terms with the transition at that stage and there was so much that I still needed to learn. Even now almost four years later I am still learning new things about my son’s autism and other conditions, everyday.
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With Autism you have to fight for a diagnosis
You see as anybody with an autistic child learns sooner or later autism is not classed as being in the same league as many other disabilities i.e. initially you have to convince those that should know better, such as doctors, that your child actually does have problems. For some reason they claim that it is not obvious to them that an autistic child is off the normal radar. Having recently watched an interview featuring the now infamous Dr Andrew Wakefield in which he says that autistic children are actually hard to miss and at one time in their US clinic within a few months even the cleaning lady could easily spot an autistic child as it was so blatantly obvious by their behaviour.
Still unfortunately it is likely that as a parent you will initially spend what should be months or even years of precious early intervention time fighting, screaming, begging, borrowing and cajoling everyone that should be helping you, just to try to get them to hear you and to finally acknowledge that there is something wrong with your child.
Even today many children never get a proper diagnosis. Back in the 1970s when I was a child in Ireland, doctors dismissed you outright if they could find nothing physically wrong with you. Hence I grew up totally oblivious to the fact that all my problems and my social anxiety was due to my undiagnosed Asperger's Syndrome. So when my son first displayed red flag issues I was shocked to realize that the Irish medical profession had not even moved on all that much in nearly forty years.
Even today there are still many that should (or actually do) know better still going around claiming that autism is an entirely psychological condition. Many even now advocate the view that all of your autistic child’s behaviour is as a result of brain abnormalities which are in no way connected with what is going on in the rest of your child’s body. Despite the ever growing mountain of scientific evidence now that this is not the case. One of the first people to dare suggest otherwise was Dr Andrew Wakefield. Little did he realize at the time the tsunami of a backlash that his well meaning, but now infamous Lancet Report would unleash upon his reputation and career. He goes into great detail about this in his book Callous Disregard which shows a different side of the autism debate.
Dr Andrew Wakefield - Bowel Disease, Autism and Callous Disregard
The powers that be have a Callous Disregard for autistic children
Callous Disregard delves very deeply into the autism world and the politics that has now long since overridden the true science or medicine that would have been celebrated in the day before it was corrupted by Governments, Pharmaceutical Giants and people who are feathering their own nests very well indeed. In fact when you delve into the world of the politics behind autism you will begin to realize that what you see and what you are led to believe will rarely if ever, correlate with each other.
The first thing you need to do as a parent of an autistic child is put aside all the preconceived notions that you may have and go and do your own research. This is the only real way to learn about your child’s psychological and physical conditions. Everybody in the autism world has an agenda be it good or bad. Some want to convince you that everything you see with your own eyes is a myth and that the politics behind autism doesn’t even actually exist. That’s just not true at this stage this ethos is very deeply entrenched in the political agenda of every country be it to a greater or lesser extent. It is now a global movement hell bent on hiding the truth behind a pandemic.
Yet experience has taught me by now that it is also very much a personal journey which can devastate you, shock you but ultimately probably make you very tough and cynical. As the mother of a vaccine damaged child Jillian Moller said it in an interview I watched recently, the worst thing about living with a vaccine damaged child is that you will now never see the world in the same light again. When you have been lied to by those that you placed the most trust in i.e. your doctor and other medical professionals in whose hands you placed your precious baby's future health only to then realize that their care was all a farce, then nothing can ever be the same again.
Now you can't have faith in anyone anymore and you start to suspect that everything you read in the mainstream media should be taken with a grain of salt. Yet you also so envy those families who take things like a fun day out for granted. You study these groups sometimes and think why our family? What I wouldn't give to turn back the clock and save my son from his difficulties? Or what must it be like to still believe all you read and watch without question because you have never had to analyze any of it?
I don't know personally because my blinkers were cast aside a long time ago. Yet for me, just when I think I know what the true depth of the politics behind autism is I can still get another punch in the stomach. So on and on it goes.
Still I love my son dearly and he has brought a new meaning to all our lives and that keeps us going through thick and thin. For me it also made me turn inwards and begin to write with a new passion. It has culminated in a fictional biography called Raindrop Window which is now being followed by a sequel Dancing Daffodils. So below is the blurb and a little excerpt.
Blurb for Raindrop Window by Mary Kelly Godley
It is the way that Ethan studies the raindrops that sends shivers down his mother’s spine. As a child Sarah too was fascinated by rain on the windowpane. She could spend hours studying drops gliding down along the glass. Each droplet trickled into a unique pathway, forming its own pattern. No two raindrops were ever the same and each one created a never-to-be-repeated design.
Rain always filled Sarah’s mind with the sheer wonder of nature. How it continuously renews the landscape. She loves the simple beauty of the intermingling colours of the sun’s rays as they shine on drying rain. To her as a child it was completely unimaginable that the other children didn’t realize what a fascinating sight this was to behold. Instead they seemed so much more interested in jumping over a rope again and again, skipping their lives away.
Sarah’s husband thinks she must be losing the plot completely. How can she even say that Ethan has problems, merely because he likes watching the rain? Yet Sarah has always known that her strangeness could affect her children. That’s what always made her so frightened of being a mother.
The search for the truth leads Sarah on a long arduous journey, past indifferent doctors, uninterested state services and into the murky world of the politics behind autism. Inevitably it is only through advocating for Ethan’s rights that Sarah finally fits all the pieces of the puzzle together. Eventually she stumbles across some information that makes sense. At last Sarah knows what caused her son to regress into his self imposed exile and why so many colluded for so long to keep the truth from her.
Raindrop Window and Autism
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Excerpt from Raindrop Window by Mary Kelly Godley
Excerpt from Raindrop Window being followed now by Dancing Daffodils, a work in progress…
…I felt so bad for him. ‘We both know there was no help in those days. Often now I wonder how many of us could have done so much better in life if only we’d had a bit more guidance or understanding.’ I paused for a moment. ‘They used to say that I was one of the most intelligent in my class, but I was always so lost when it came to the social side of things. Poor Ethan, seems to be getting the bottom of the barrel of both of our genes.’
Aaron gazed across the room at Ethan who was laughing heartily at the Dolmio advert on the television. ‘He’s so happy though, maybe he’ll be fine or maybe he just isn’t hearing us right. We can’t be sure at the minute, so let’s try to think positive and maybe everything will still work out okay.’
I said nothing. Maybe, just maybe, Aaron was right. Was I being too paranoid? Or was it still possible that tomorrow Ethan might simply start talking, pointing and looking at me like he really understood? Somehow, I seriously doubted it.
The next day I opened the door of Doctor McGuire’s surgery and nodded my head at the receptionist, Juanita.
‘Hello, Sarah,’ she said. ‘And how is Ethan today?’
As usual Ethan didn’t acknowledge Juanita; instead, he started pulling at my hand and tried to manoeuvre me back out the door.
With a lot of effort I dragged a very unenthusiastic Ethan towards the waiting room, hoping it wouldn’t be too crowded. Even before I opened the door, though, I could make out a number of heads behind the glass and I started to feel anxious. The last thing I needed now was a long queue.
With great difficulty I hauled my protesting son in the door just as every eye turned towards us. Then I struggled to get over to the only empty chair, but before I reached it Ethan threw himself on the floor and started screaming. ‘What’s wrong with that boy, Mummy?’
From the corner of my eye I saw a small red-headed lad pointing at Ethan. The look on his mother’s face said it all. I knew that disapproving glance well, and suddenly I felt a pang of guilt. Hadn’t I used that very look myself when my daughter Naomi was her brother’s age? It was that ‘don’t-blame-the-child-blame-the-mother’ kind of a look. Now for the first time I really understood how I must have made other mothers feel. Why had I been such a judgemental cow in the past?
When I caught that mum’s eye, I realized that I knew her from somewhere. At the moment though, I couldn’t remember from where exactly.
She smiled at me with a slightly embarrassed flush coming onto her cheeks.
‘We all have those days,’ she said. ‘He doesn’t like the doctor?’
‘No,’ I said, deciding to sit down and let Ethan get over his tantrum in his own time.
‘It’s Sarah McLoughlin, isn’t it?’ the mum asked.
And then I remembered. ‘Oh, you are Treasa Dunne, aren’t you?’
Treasa nodded her perfectly highlighted hair, leaving me to wish that I had at least washed my greasy locks before I came here.
Also, I couldn’t help but notice what great eye contact her son was making with me.
‘What age is your little boy?’ I asked her.
‘My name is Niall and I am two and a bit,’ the little boy answered clearly.
I smiled and tried not to let my voice tremble. ‘You talk very well.’
He nodded his head and pointed at Ethan again, ‘Bold boy.’
Treasa Dunne laughed nervously and said, ‘Don’t say that, Niall, that’s not nice.’
Just then the door opened and the receptionist Juanita beckoned towards Niall. ‘Doctor McGuire will see Niall Dunne now.’
Treasa stood up with lightning speed and nodded at me.
As I watched them walking out the door, I felt like running from the surgery, going home and locking the door behind me. Twenty-five minutes later I finally hauled a very cranky Ethan into Doctor McGuire’s consulting room.
Doctor McGuire had his usual ‘surgery hours’ smile glued in place and beckoned for me to sit down. ‘Hello, what can I do for you today?’ he said.
I tried to reply while also attempting to prevent Ethan from running out of the door.
‘It’s Ethan; I don’t know what to do about him.’
‘What is the problem with him?’
Doctor McGuire started typing frantically into the computer in front of him.
‘I don’t know but I am worried that he might be dyslexic.’ The doctor raised one eyebrow ever so slightly. ‘Why would you think that?’
‘Well, his dad Aaron is dyslexic and I’m worried that Ethan might be too because he is two now and he still isn’t talking.’
‘Hmmm, what about his other milestones; did he reach them on time?’
‘I think so,’ I said, trying to think back.
Doctor McGuire started typing again. ‘What age was he when he crawled?’
‘About nine months, I think.’
‘That seems fine. What age was he when he walked?’
‘He was roughly fifteen months.’
Once again Doctor McGuire nodded his head. ‘That’s perfectly normal. I don’t know if there is any great cause for concern at this stage. Are his ears okay?’
‘That’s another thing, I think he needs a hearing test and a full psychological assessment because sometimes he doesn’t seem to hear me at all but other times he can hear me from the other room. He also doesn’t seem to pay attention to most other people or be at all interested in them really.’
Just then Ethan stopped pulling at my hand and sat up on my lap finally exhausted from all the screaming.
‘Mmmm, I can refer him for a hearing test but there is a very long waiting list so he will more than likely be talking before he gets called. Speech delay really is quite common in boys and most catch up quickly once they do start talking.’
I could feel my hope slipping away but decided to keep going anyway. ‘What about a psychological assessment?’ I asked.
Doctor McGuire’s smile slipped ever so briefly before being replenished. ‘Sarah, that would take years and I would imagine he’d be in school before he even gets called for that. I am sure he will be walking and reading long before he gets called but if you really feel he needs it then I can do a referral later on.’
I nodded my head.
The doctor lifted his otoscope off his desk and said, ‘We’ll have a look in his ears just to make sure everything is okay.’
Ethan had just fallen asleep and I knew that this was going to be a mammoth task.
‘Maybe he’ll stay asleep,’ the doctor said. ‘If you hold his cheek against your chest I’ll look at that ear first.’
Wearily, I placed my right hand over Ethan’s cheek. As soon as he felt the coldness of the instrument entering his ear he woke up and belted it away. Then once again he began to howl uncontrollably.
Doctor McGuire tried to look again just as Ethan almost wriggled out of my grasp.
‘Okay, Sarah, hold him tighter.’ With difficulty, I did as I was told. ‘Mmmm, yes, everything looks okay in this ear. Let’s have a quick look at the other one.’
Finally the job was completed although I doubted the doctor could have seen very much with the amount of struggling Ethan was doing.
Five minutes after leaving the doctor’s Ethan was sleeping peacefully in his car seat. When I pulled up outside my house, I couldn’t help myself; I put my head down on the steering wheel of my car and sobbed uncontrollably.
There was just no help anywhere. My mother thought I was overreacting, and my husband thought I simply wanted to show everyone that I was right. Now my doctor thought I was merely a neurotic mother with nothing better to do with my time except imagine my child had dyslexia. What was I going to do? Another sob wracked my body. Who could I turn to for help? Where was there to go from here? Or had I lost the plot completely? Maybe this was what insanity felt like?...
The Politics behind Autism
I hope for any parent out there that you take some solace from this excerpt. Rest assured no you are not mad, or being an overtly obsessive parent or its not your fault your child has these severe behavioural issues. Time and time again parents have been railroaded into ignoring their gut instincts and even now as I write this many are being told to ignore the obvious changes in their child.
It’s just a boy being a boy, or your other child was just advanced for his age and that’s why you mistakenly believe there are problems, or maybe it’s the child’s diet that is causing ongoing constipation or diarrhea. Alternatively you could be told your child is having repeated infections/viruses because they are just going around and not as a reaction to any toxins. Of course you will be doubly scolded and chastised if you even suggest it could possibly be 'an adverse reaction to a vaccine.' You will then be very vehemently reassured that there is absolutely loads of scientific evidence out there that vaccines are perfectly safe (in reality though you might find it easier to find the scientific evidence that correlates with vaccines causing many adverse side effects than all those reports that applaud how safe and effective all vaccines are claimed to be).
That folks has been my experience to date anyway. Unfortunately to get help for your autistic child you will have to fight, scream, write many pleading or caustic letters and even then it will be tough. The best you can hope to do is to surround yourself with knowledge, research and never assume something you hear about autism is true or untrue. Instead research it for yourself because when it comes to the global politics behind autism very little, if anything is ever really necessarily what it seems.
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