'A Father's View On Autism'

Autism impacts many people globally and everyone's view varies. Today I share with you some Father's views from our amazing Facebook Community Autism Living Life On The Spectrum. To be part of this amazing community and find out more about what we offer simply click on the 'Our Journey' button at the bottom of this page...

We Are All Unique As Our Fingerprint...

 Chris Carr

Chris, 50

Hi, I’m a Dad of a son on the Autism Spectrum and this is how I feel about it as a Dad.

We knew from an early age that something was not quite right with our new born son. He was sent to a child development at 4 months of age, at 18 months he was diagnosed with SPD. We were told by the time he reaches school age he would be diagnosed with ADHD or Autism or combined with both. The first major sign was banging his head on the hardwood floors continually it was very scary and concerning. We got all the help needed as early as possible. By the age of 5 he was diagnosed with ADHD. By the time he was 8, he was becoming harder to manage.

Medications didn’t seem to work. One of the biggest frustrations, was we knew he was also on the Autism Spectrum as we heard professionals say “oh that’s just Autistic traits”, but they never gave us the write tests and he fell just short of an official diagnosis. I was very angry about this, and even had a go at the doctor that had commented about his Autistic traits.  How could he say this, yet not except that he is Autistic ? Any way we contacted the Autism Association and explained our situation.  They were the ones that informed us that the tests we were given where way out of date and should not be used. We approached our doctor he said he was at a loss and could not help. He wasn't even prepared to help and get the proper tests, and because of that the local hospital would not even help (we live on Christmas Island) we went private.  No help with PATS (patient assistance travel scheme).  No help from the hospital.  No help from doctor, who is a specialist.  We went it alone.  Long story short, we got the right help and had a SPECT Scan (an image of the brain taken in slices, which highlights the over activity in the brain while resting) done on our son, which also confirmed Autism.

When we got the diagnosis our doctor was full of apologies and admitted that he could and should have handled the situation better. The hospital is now on board and have been a great help too.

Any way how I feel as a Dad ‘I HATE AUTISM’ and the negative effects it has on my son!! I’ve gone through anger and grief. Also a feeling of loss and feeling sorry for myself (I know that feeling was selfish but was also real). Oh how life changed, we always had parties and a very good social life, we had people visit every day went camping and fishing with groups of friends regularly, life was great until our son was born. We soon found out who where our true friends and who weren't. That was a very heart breaking experience, although it has worked out for the best. The reason I say that I hate Autism is for many reasons, the exclusion, nasty comments from people that have no understanding, like you're too soft, a good kick up the bum will sort him out or your son is a freak and so on. Times when I’ve had my son cuddling up to me saying how he hates that he has Autism and no one understands him. How he is very rarely invited for sleep overs and celebrations, it breaks my heart. I’m also very protective of him and are not afraid of confrontation when adults have treated him wrong and disrespectfully. I will go see them and let them know what they have done is not acceptable.  In some cases, I’ve even told people I am willing to go to jail to protect my child if they continue to be nasty. Even a local police officer who yelled and swore at my boy didn’t care.

All we ask for is a bit of understanding. I hate having to battle for his rights, education and medical, also the depression my partner has suffered through all of this. Also how much my neurotypical son misses out on. I find it hard to find a balance due to the amount of time and attention my Autistic son requires.

There are parts that I also love about Autism, the sense of humour, the artistic side of my son, the love and affection that he can display is just fantastic. Some times and 95% of the time he is always up for a cuddle which I love. He can also at times communicate his true feelings. I was brought up men don’t cry men don’t show emotions, just deal with it and get on with life. I know I’m not alone in this and can understand how hard it is for other men to come to terms with this and find acceptance. Most of us have been programed to being hard or tough. I have learnt so much about life and a lot of that is because of Autism. So, to the men out there struggling to get their head around this and are battling with denial, and loss of a social life you are not alone.   It’s not an easy road to travel but if we are open and honest it gets easier and groups like this are a wealth of information and support. Check it out, you have nothing to lose and plenty to gain.

I am 1 of 15 in our family and the youngest one. I was abandoned when I was 14 which led to a life of living on the streets, drug problems and eventually jail, all because I was rejected and felt unloved. My disadvantages in life have become my advantages today and I know the pain caused by rejection and abandonment I never ever want my kids to feel that way and I’m sure other dads don’t want their children to feel that pain as well. So please open your hearts and educate yourselves about Autism…

Education is a Powerful Tool...

Autism

My name is Chris and I am a dad to a Alex who is 9 and has Autism.

I also have a daughter Sophie who is 14 and NT. Probably the first real warning sign that I had was at his first birthday when other kids were saying ‘Dadda’ and ‘Mumma’ Alex was pretty mute – he’d just scream for anything. At about 13 months I caught the last 2-3 minutes of a show on the ABC about a boy with autism and I bolted upright. I got onto the internet and looked up autism, red flags, CHATT test etc. By the end of it I was pretty convinced. My wife was asleep at the time and about 4am I said to her ‘I am worried about Alex’ her reply was ‘Do you think he has Autism?’.

That was the beginning of a whirlwind, my wife immediately swung into action, within a few weeks we had seen a developmental paediatrician who said she was about 40% sure he had autism. We also went to community health they said there were a few signs and gave us a block of therapy to kick him along. I did an introductory course on autism parenting, including melt downs, PECs, you name it. We also engaged a speech therapist and an OT. His first word was in an OT session with community health, it was ‘More’. I hated going to therapy, still do but in the early days we went to absolutely heaps. I had a new boss who watched my hours closely but did not give an inch on flexibility - we ended up at war, I work for a Government department who should know better - we went to the Australian Human Rights Commission after which everything at work changed for the better. About this time I remember sitting at my desk with tears streaming down my face. It was an incredibly dark time in my life.

At one stage Alex was attending about 15-20 hours of therapy, it included Speech, OT, Psychologist/Psychiatrist, ABA, and even Bio Medical. The Bio Medical was a nightmare, I wish I hadn’t done it, Alex had to have blood tests I had my arms and legs wrapped around him as he screamed blue murder. As I am write this I can feel my heart clenching. Our pediatrician knew of the Bio Medical Dr and described him as a nutcase, I was already convinced anyway.

There was a stage when I knew where every new skill my son developed came from and almost all of it was taught. I stood on our balcony with a bag of crushed chips and if he wanted a chip he had to say ‘chip’, then ‘chip please’. I think I was convinced that if Alex could talk he would be cured. I got him to repeat the word ‘hello’ to a pediatrician once to prove that he didn’t have autism :) I was so naive.

My wife is amazing at getting resources, she is a classical warrior mum, so she concentrated on that and I generally focused on the therapies. Because of this I’m a very different person to whom I was 9 years ago or even 14 years ago. Up until this point I was sort of career orientated I have a Degree in Engineering and an MBA and make my living as a computer programmer, in other words I am a techo. In attending so many therapies I became interested in the softer skills to the point that I am now studying Psychology (woo hoo 5 subjects to go) – I’ve always wanted to study a PhD and that is still my dream but instead of some obscure aspect of software engineering it will be Autism related. I also only work 4 days.

Today Alex has a very good level of functional language, but still well behind his peers, he goes to a mainstream school and last year topped his entire year in mathematics, he also learns the guitar and keyboard and is really amazing at them and he has a great sense of humour. He still struggles at school and is probably at the bottom of his class in all other subjects, he has ODD and ADHD so at times can be really hard to deal with and, to be honest, I get really angry at him. I go from one day sure he will have a PhD and make big changes to the world to thinking he will live on a pension in supported accommodation. I worry constantly about him, I am 56, an older dad and won’t be around for him when he is older.

Kevin


Being a parent, for the vast majority of people,
will be the biggest undertaking we will ever make.


To be responsible for the well-being of a child is a steep learning-curve and speaking as the father of a 4 year-old beautiful boy with autism it is a significant challenge – but one that does reward itself with perseverance.


My son was diagnosed at 2 years of age as being on the autism spectrum, typical of many his language was delayed and he wasn’t developing like a “normal” child. Diagnosis like this brings a barrage of emotions and a crash-course (which continues) in what comes with it all – the assessments, therapies, funding – it felt like there was a million acronyms to learn!


I’m in a lucky position to be able to spend alot of time with my son, and with my wife have jumped into the deep-end with early intervention and generally keeping an open mind with how we can get the best out of our boy. Being hyperlexic he often displays his amazing skills with words and memory but he is still non-verbal which is obviously frustrating for him – we work him hard sometimes to communicate his needs but also acknowledge he needs to have fun and be a kid.


That is one of the frustrating things being the parent of a kid on the spectrum, analysing their every good/bad day but trying to take the time to live in the moment and enjoy the gift of having a beautiful, loving and entertaining young person around.


As a father I wish for my son the same as what I feel any good parent should
– that he is happy, healthy, and grows to be a forward-thinking,
independent and loving person with healthy relationships.


14218417_10154384446783449_761673025_n

 Rodney

I'm 56yrs old father, married with three boys (11, 7 & 2) and one girl (10).

Our 11 and 7 year olds were both diagnosed with ASD, just before turning three. Prior to the first diagnosis we started to think "What sort of parents are we, that we are not able to control our son's impulsive behaviour, or to teach him how to talk".

My wife would often call me at work either in tears or distressed with some recent behaviour of our son or of comments that people had made to her concerning him. As a husband and father, I found this hard to deal with over the phone. How could I support my wife during the day as I was away at work ? How could I train my son to have a more acceptable behaviour when around other people ? The feeling of helplessness often came over at these times. When I first heard the word "Autism", the feeling of loss washed over both my wife and I. The fear that my son would never be able to speak or interact with others, go to school, get a job or get married and have a family. As dad, I had dreams of what our son would be like when he grew up. These seemed to fade away when I heard the "A" word. Yet, as the years progressed with early intervention, that was available here where I live in Melbourne, my son began progressing and ended up going to a mainstream school.

Once at school, I thought that things would get easier as the kids would make friends and play together. How wrong I was. Each year in the mainstream school, my son has been the victim of bullying in one form or another. As as father, I want to protect him from it and to support him to be strong. I can't be with him 24/7. Yet, as I as I look at my own parenting style with the kids, I can see aspects of it that could be seen as bullying when trying to get them to do what things are needed at the time.

I always thought that I was a patient and understanding person until I had kids of my own, especially with two boys who perceive the world slightly differently to me. Many times I've had to go to my kids to apologise and ask their forgiveness. They in turn, say they love me as they give me a hug. My kids have taught me so much about life and parenting. I'm still learning that I need to allow them to do things for themselves, even if they may make mistakes or not do it the same as I would have done. My role is to encourage them rather than control them. The controlling factor is something that I'm finding hard to let go, probably as I might be an undiagnosed ASD myself.

Bottom line. I love all of my kids and I would not change them