Autism or Aspergers Diagnosis. Part1
Autism, Aspergers Syndrome and us
Nobody expects to have an autistic child. For me personally I knew absolutely nothing about Autism Spectrum Disorders until my three year old son finally received this diagnosis almost two years ago now. Until that point all I had ever thought about autism was that it was something that happened to other families. All I had ever really read or heard about Autism was that it was always a profound disability.
I knew nothing about autism being a spectrum disorder with so many different challenges, levels and abilities. Instead I always felt the greatest of sympathy for anyone who I heard had an autistic child. Then I would silently think thank god it’s not me because I simply couldn’t cope with it. Then I would endlessly marvel at the strength that those parents must surely possess and that they must be immensely courageous to be able to cope at all.
Then along came my handsome son Adam. When I was initially handed this seemingly perfect newborn baby boy he was so beautiful that I could not imagine his life being anything other than picture perfect. So any fears or worries that I had harbored during my somewhat difficult pregnancy now evaporated. Still I believed that special needs children were something that affected other families and that it would never happen to mine.
My son’s first year sped by with what I just considered to be the usual problems of a new mom i.e. breast feeding just didn’t work, he couldn’t latch on so I decided to bottle feed instead. There were also some colic induced sleepless nights but I just thought this was all part of the course. At that stage I was still dreaming of my son’s first words, his first day at a nursery and a normal, full life for him. I was wondering if he’d be aware of his first birthday and when he’d start to speak.
When my son turned 15 months I really began to instinctively feel that something was not quite right. I could no longer ignore the fact that my son seemed to be very unresponsive most of the time and was just not developing like my daughter had.
It is at this stage that you are particularly vulnerable as you still have a lot of hope that just maybe you are mistaken. Those you discuss your fears with often just mean well and try to endlessly reassure you that it is just too early for you to worry unnecessarily.
When I finally plucked up the courage to mention the Autism word just very casually I was immediately bombarded with many platitudes that completely played down such a ludicrous suggestion.
Some of the arguments I played over in my mind and the reassurances given to me by well meaning family and friends included:
- Boys just talk later than girls.
- The male of the species are just more laid back than their female counterparts and often just don’t pay attention to you when you call them. (Sometimes it will be suggested that there could be a potential hearing problem so this will also need to be ruled in our out first.)
- My doctor told me that Adam was walking and reaching his other milestones so I just needed to be patient and everything would work out fine in the end.
- Adam is just shy like his mother.
- Your son is just much too intelligent to possibly have any type of a disability.
- Am I just looking for a problem because I am always just totally paranoid about everything?
- Lots of kids like spinning around incessantly and don’t like teddy bears or certain toys.
- Some children just like watching their favorite TV shows over and over.
This is just a little excerpt from my work in progress i.e. my fictional account based on my own experiences and research which truly describes how I did feel at this time.
Raindrop Window by Mary Kelly Godley……..
Ethan has never been in Dr. Mubarek’s waiting room before but he still seems to just know that this is a building where a dreaded doctor resides. As usual he stops dead outside the entrance and starts pulling my hand rapidly and is trying to walk back towards the car.
‘Oh come on Ethan, this is going to be a lovely room, I’ll give you a nice biscuit, mmmm.’
Of course he is not falling for that one though and I eventually have to pick him up and haul his dead weight in the door while he is already throwing back his head and arching his back defiantly.
The receptionist smiles and meets my gaze. ‘Hello.’
‘Hi,’ I reply over Ethan’s protest screaming, ‘Ethan McLoughlin to see Doctor Mubarek?’
‘Ah yes Mrs McLoughlin, please take a seat and I will call you when he is ready.’
‘Thanks,’ I say and sit down on the first vacant seat I see.
Quickly I take Ethan’s favourite book out of my bag and press the button. The tune to Twinkle, Twinkle little Star fills the waiting room. Immediately Ethan stops complaining and becomes transfixed by the flashing star that is illuminating the page. He smiles broadly and my heart melts.
Then I notice another boy walking across towards us. He has blond hair as well although it’s much longer than Ethan’s and he looks maybe two years older. This boy’s blue eyes are also transfixed on the twinkling stars flashing on the page. He stops behind Ethan and touches the page.
‘Ah, ah now Jonah, that book isn’t yours.’ His mother walks quickly towards the boy.
‘He’s fine,’ I say, ‘is he fascinated by musical books as well?’
His mother meets my gaze and nods her head, ‘yeah he always has been, it’s a common enough fascination in autistic children.’
‘Oh,’ I don’t know what else to say, ‘does he have grommets?’
She nods her head again, ‘this is his third set, they only stay in for so long and then they fall out. It’s common enough too for children on the autistic spectrum to have ear infections, has your son had ear infections?’
I shake my head, ‘Ethan just doesn’t seem to be hearing things properly so I just want to have his ears checked because he is a late talker. I am a worried there might be another problem but he doesn’t have Autism.’
I think I see surprise registering on this ladies face but only for a split second.
‘Oh okay, of course.’
Just then the Doctor’s secretary walks from the reception area into the waiting room and says, ‘Jonah Burke.’
‘Okay thanks, come on Jonah let’s go and see Dr. Mubarek.’
Jonah reaches out his hand to his mother and I watch them walking away. Does she think Ethan has Autism? I wonder if she has seen a lot of children with Autism or does she think that if Ethan is having ear problems and likes the same books as her son that then it just must be? It’s not though just because he might have some of the symptoms of it there are still many other explanations that are just as plausible and much more likely.
Still the seed is beginning to germinate and a niggling question permeates through my thoughts, could Ethan have autism…..?
For me when the final day of reckoning arrived I was devastated and hugely relieved at the same time. A Speech Therapist finally took me to one side and suggested that a lot of Adam’s behaviors were ‘quite autistic.’ She pointed out certain things that had in fact been blatantly obvious to me for a long time but I just had not been ready to take that inner voice seriously enough. When the questions raised themselves in my head I would slap them back down again and tell myself I was just overreacting.
So if you think your child might have a learning disability of any type or there are certain characteristics that might just indicate Autism then please don’t be fobbed off like I was instead if you can afford it run and don’t walk to a psychologist and get a Psychological Assessment. The worst case scenario here is that you could be wrong and if you are you have now just paid for peace of mind. However if you are in fact right then this diagnosis may knock you for six but it is a very necessary part of the process of obtaining the best help possible help for your child.
For me it was such a relief to finally talk to somebody who openly discussed and listened to my many concerns. Yes that meant my child now had an Autism label which now made it all so real and conclusive because now I had to totally accept that my son was autistic and autism was no just not a theory in my head or a figment of my imagination anymore.
Usually though before you can get a diagnosis you need to have totally ruled out the possibility of a physical cause to your child’s condition such as Glue Ear. This is a condition that causes a build up of fluid in the inner ear and may contribute to some temporary hearing loss. This can delay speech and could also cause some behavioural issues. Therefore you will need to consult with an Ear Nose and Throat Consultant initially before assessing your child.
A Psychological Assessment usually involves a number of diagnostic tests. It will also include gathering a lot of information about the parent’s developmental history along with siblings and other relevant information about extended family members.
So if you have concerns about your child’s development you should as much as possible try to trust your own instincts. Educate yourself on how to understand the Autistic Spectrum of Disorders. If your child does receive an Autism Spectrum Disorder diagnosis then Early Intervention is vitally important. This should always include speech therapy, Occupational therapy, behavioural interventions where necessary and appropriate Psychological assistance. The earlier you start helping your child the more they may progress during their formative years.
A diagnosis of Autism can be very traumatic for the whole family so please do accept any help, support or advice that you are offered. An Autism diagnosis can often put a huge strain on a family which could potentially impact negatively on the autistic child too. So it is vitally important to address and deal with any issues as soon as possible. Ideally the entire family need support and advice at this time. Do whatever best helps you as family to cope with an autism diagnosis.
For me an autism diagnosis was a revelation because less than a year after Adam was diagnosed with Childhood autism and developmental delay I also received a diagnosis of Aspergers Syndrome. So for me it was a journey that gave me immense strength i.e. if I survived albeit with a lot of emotional scars then Adam had huge potential provided he can access the right help and support now.
As I delve into more in my memoir On the Spectrum my greatest fear of having children was that they would experience the same difficulties that I did myself as a child i.e. the total confusion, fear and anxiety that descended upon me when I started school and was expected to interact and to know how to deal with other children.
Now though I know it can be different for Adam because he has the benefit of something that wasn’t available to me in 1970’s Ireland i.e. a diagnosis. Some would say a ‘label,’ but I just see it as a signpost to guide Adam to a better path than the one I descended down. Now that I know Adam is similar to me albeit a bit further along the Autism Spectrum then that give me a lot of hope and optimism for both of our futures.
In time you will embrace your child's uniqueness all the more and accept that although he or she may have a different perspective on the world they still have a whole lot to offer. Being on the spectrum is just a different way of being.
My facebook page where I often rant
- Improve Your Experience | Facebook
Me on Facebook where I have written and commented on many subjects Autism often included.
How to Diagnose autism, not how it often happens here in Ireland though.
Sign and Symptoms of autism
Early signs of autism
Irish Autism Advocate - Father Jack of Father Ted fame
- Irish Autism Advocate - Father Jack of Father Ted Series Fame
For anyone that remembers the Father Ted series you may be surprised to realize that Father Jack is now doing his bit for an Irish Autism Advocacy Group.
Early Indicators of possible ASD
Autism Care In Ireland Petition
- Petitions24.com - Signatures - Autism Care in Ireland
Help improve Autism Care in Ireland