Gavin: "My family is on the Autism spectrum and we strive for improvement"
My sons and I were born on the autism spectrum. I have Asperger’s Syndrome. My eldest son has Asperger’s too, but he also has ADHD (Inattentive type). My youngest son has high functioning autism. These are disabilities which can make life very difficult for us at times.
In my case, I'd always felt that I was different, but I didn't learn why until I was in my mid-thirties. My children, however, were diagnosed aged five and three. They've known all their lives. Autism affects us all quite differently, but we're similar in lots of ways too. My wife isn't on the spectrum but, among her other roles, she's a mentor to all of us on all things “neurotypical” and she keeps us grounded. Together we support, educate and inspire each other.
My parents and I were completely unaware of my disability when I was growing up. Luckily, I am also partially deaf with about 25% hearing in my left ear and more or less none in my right. It seems strange to say that I’m lucky to have been deaf, but it was my deafness enabled me to receive additional help and support.
Being deaf meant that teachers would spend more time explaining things to me or would write them down. This meant that I didn’t have to struggle with tone and facial expressions quite so much. It also meant that I got speech therapy from a young age and that, as a result, 'robotic-sounding' Asperger’s speech issues didn’t become a problem.
It’s only recently that I’ve understood that being deaf also meant that some of the more severe sensory issues, that can occur for autistic individuals, weren’t an issue for me. I also had terrible sinus issues as a child, so smell was often not a problem for me either.
Needless to say, while I grew up oblivious to my condition, I never fully integrated into society and always felt “like an alien”, like I was on the outside of social gatherings, looking in.
When my first son was born, my wife and I struggled in our relationship. She would always tell me that there was “something wrong” with our little boy and I’d always dismiss her comments because he was exactly like I was. He was growing up in the only way that I knew and the so-called “unusual” things that he did, like lining his toys up, were very familiar to me. Those early days were full of arguments and they weren’t happy days. It was only after we’d been through a number of paediatric assessments and were reading up on Asperger’s that the “penny dropped”. I was different too.
As we researched Asperger’s syndrome, we began to understand my son better and I began to understand what was different about myself. At first, I was quite disappointed that so many of my quirks could be put down to a label rather than simply individuality. But, as I began to accept myself, I also discovered that I could improve myself. I joined forums, read books and started blogging about my experiences in order to find out how other people dealt with their differences.
Understanding Asperger’s helped me to realise what I needed to bring to the relationship with my neurotypical wife. Our relationship settled into a much better place and we became more supportive and consistent as a couple and as parents. Our children benefited from these changes too.
We never hid the facts from them but made it clear right from the start that they were on the autism spectrum and that they were a little different from many of the other children at school. They were delighted to find friends who were on the spectrum too and, rather than rebelling against their diagnosis, they’ve embraced it with open arms. We concentrated on building via their strengths - particularly their special interests - and we tried to address their weaker areas with everything we could. This included speech and occupational therapy, individualized education plans (IEPs) and tutoring. We used Scouting to provide a diverse array of social situations, which allowed my boys to build up their social skills. We also turned to karate classes to work on the problems of low muscle tone.
My wife and I spend a lot of time providing coaching, advice and real-life examples during our day-to-day activities and we use our holidays as opportunities to broaden our boys’ minds and get them working together to support each other in unfamiliar environments.
My boys are now aged 17 and 14. They’re mature individuals who are proud to be different, but they’ve never lost who they are. They also know how to blend in and work with others and how to show empathy in a way that neurotypicals can understand.
Lately, they’ve been talking about the kind of jobs they would like to have when they leave school. They have much better social skills than I did at their age and they’re almost ready for their next big steps in life. I feel that I’ve learned just as much about autism from them as they have from me.
Taking the time to really familiarise ourselves with our diagnosis with the support of Existential psychotherapy has led me to a greater understanding of how we can learn to live as individuals and as a family.
If you resonate with Calvin’s story and are looking for support, know that help is out there. If you’re ready, you can start your therapy journey by simply contacting progressiveprocess@live.com.au or by clicking here.
Danielle: "Parenting my autistic child"
It was a rainy Monday morning in January. I remember because my husband had gone to work and I was left dealing with the huge pangs of disappointment that the weather was holding us hostage in our own home. But, I wasn't disappointed because we were being deprived of a morning of family fun. Oh no. I was disappointed (actually I was nervous) because kiddo and days spent at home did not mix. I had no idea why.
It was a few weeks past his 1st birthday. I watched on as he head-butted the rubber tiles in his playroom, thankful that he had chosen these over the wooden floor. He was distressed. In emotional agony. I knew this but, for some reason, the rest of the world was trying to convince me otherwise. That somehow it was my perception of his behaviour that was wrong.
"He's just hit the terrible twos early." "That passion will stand him in such good stead in the future!"
With these sentences playing on repeat in my mind, I carried on watching, keeping him safe, as he descended into a full-on meltdown. He was in a place where I could not reach him.
Normally the fresh air helped in these situations. But today nature had planned against me. The whole day seemed to stretch out in front of me like a never-ending treadmill. Exhausting and getting nowhere. But of course, the evening did come, and the next day was born. From that day onwards, I could no longer deny that things were not right with our beautiful, funny, passionate son.
I started to read up on autism. I was familiar with it from experiences in my working life. I read checklist after checklist of symptoms. Every time he ticked all the boxes without fail. Some things I knew of already, such as the head banging and delayed language. Others were completely new to me - a high pain threshold, refusal to try foods, etc. I was like a sponge taking in every minute detail about autism. It had already started to invade my life whether I liked it or not, and I wanted to know what I was up against.
A year passed by and nothing improved. In fact, it became worse. Amplified if you like.
So, being the dutiful mother I was, I rang the health visitor. They tried to put my mind at rest in a beautifully condescending way: "Are you having a bit of trouble?". "Just a tad" I replied, playing down the screaming voice inside me which wanted to shout "HELP ME!" at the top of its lungs. There was only one thing I could do - let these people see for themselves exactly what I was dealing with. So, off to the hospital we went. With its bright lights, echoey corridors and strange smells I had no doubt that it would swallow my beautiful child in a torrent of fear, and that he would act the only way he knew how.
By the time the health visitor came to see us kiddo was already violently smashing his head on a glass fire exit door. When approached by her he simply attacked, such panic in his eyes. She looked at me stunned. Not because of the behaviour witnessed, but simply in awe of how we had come this far with no help.
It was at that moment I realised my gut feeling was right. Those voices that used to swirl around my brain, those voices convincing me his behaviour was just boisterous, they were wrong. So very wrong. From that day on, I promised myself I would have more faith in me; a belief in my own thoughts and feelings. And it's a good job too, because I was about to be thrown into a fiery pit of appointments, assessments and interviews. My life was about to be put under a spotlight in a way I could never imagine. Every professional would have an opinion. An opinion on diet, behaviour, education, sleep, my parenting skills. Every aspect of my life was to be put under a magnifying glass.
The following year was tough. In fact, it wasn't just tough, it was the hardest time of my entire life.
Bearing in mind I had a two-year period of severe depression in my life, and watched my mum fight and die from cancer, I think that puts it in perspective.
After our first few appointments, I had a huge realisation: I needed to fight. Everything my child would get in support and education was going to be down to my own sheer determination. So I went for it. I gave up my childminding business and dedicated a year of my life to making sure my son had a shot at his. A chance to live a fulfilled life, in the right environment for him.
That year has now passed and I won't lie, I'm exhausted. But, looking back, there are two things that totally saved me:
1. Existential counselling. Facing my Existential crisis was key for me. Finding the time to talk and make sense of everything that was happening to me and my family was essential to my success. It may seem like you just don't have the time to fit it in, but believe me, it saved my life. It kept me going through what seemed like an endless - and at some times, pointless - struggle.
2. I remembered I was more than just a mum. I was a wife as well. My husband was there for me, I'm one of the lucky ones. I was a friend as well as a fighter. Without my friends in similar circumstances, I don't think I could have made it through. I remembered I was me. Occasionally (and not as often as I should), I put my emails away, and the books of the SEN education system down, and got my paints out. I took up cross stitch, such a mindful and yet simple activity.
Nearly three years into our autism journey, we are about to embark on a whole new chapter. Kiddo starts SEN school in two weeks. I can hand on heart say that the agonising fight was worth it. But I can also say it was the hardest thing I have ever had to do. So if you are embarking, or are very much in, this twisted rollercoaster of a journey, remember to look after yourself.
This is a tough life you lead, one that perhaps others not in your situation can understand. Surround yourself with understanding people, people who have got your back. And above all, remember to enjoy your child. Autism is tough, relentless and also beautiful. But hear me when I say, your fight will be worth it. I now feel the happiest I have for years. It's a new dawn in our house. Keeping going, you will get there.
If you resonate with Danielle’s story and are looking for support, know that help is out there. If you’re ready, you can start your therapy journey by simply contacting progressiveprocess@live.com.au or by clicking here.