By Aaron Bouma
I, at 28 and having Autism, admit that there have been tough times in my life.
Life is like that; there are tough times and there are good times. But it is all about how we deal with it in our actions. Like all of us, I’ve gotten mad, hit things, yelled, swore, etcetera. When I was younger I had more behaviour problems, as far back as elementary school. As this being in the 1990s the system and the T.A’s, as well as certain teachers, were not as understanding and patient. I was bullied by pears as well. But what made all the difference was family. My mother, father, sister and brother.
I didn’t speak until I was age 4, but only had a few words. I didn’t really fully speak until age 5. My mother, father, brother and sister never ever gave up on me. I owe them credit to getting me to where I am today. Without them, I don’t know where I’d be.
I had speech therapy when I was 3 and 4 years old. I had a worker that helped me. But my mother helped me on a daily bases to learn words and by reading stories to me. Also by pointing at objects and saying what they were. Of course this is in the early 1990s and ABA therapy was not around then.
When I was growing up, my brother and sister and I would argue as usual like any other family. But we have always been a strong family, with Canadian and Dutch traditions. My mother being Canadian, my father was born in Utrecht Holland. When I was younger my brother and sister would get jealous a little because my mother would spend a little more time with me overall. But it wasn’t serious. My brother Jonathon who is turning 40 this year is 12 years older than I am. My sister who is 36 is 8 years older. I’m the youngest of the three. At 28, with all of my struggles and successes I am always personally reflecting on life. Trying to analyze how I’ve evolved and changed and certainly improved over the years. I cherish family as valuable as I can. Maybe I even need to cherish family more, because family and close friends have been the backbone of my successes, and there for me when times were tough.
Me and my siblings have always done a lot of things together, all of us as a family has I should say. I learned early on that some friends didn’t have the supports and as much caring as I did in my family. We have always lived in Jacksontown, a small community outside Woodstock New Brunswick, Canada. The population of Carleton County is about 25,000 people, the population of Woodstock itself is about 6,000 today.
When I was in Grade 6, the first year of middle school I had developed anxiety. Obsessive thoughts and feelings toward scenarios which would probably never happen. At that point in my life I knew I had autism because I had been told, it was just something that was. Something that was different about me. I never really talked about it. I never really thought about it much. It was just something that was there.
Your first mistake is to think you are defeated. Your second mistake as a parent or advocate is to think it can’t be done, or this or that’s not available so you quit.
Many on the autism spectrum have another diagnosis along with autism. Sometimes it’s ADHD, or PDDNOS, Etc and sometimes more than that. Mine came with OCD. I have had 2 large anxiety crises that have spanned about 2 weeks or more. The first was in the winter of 1998, February and early march. I was having trouble with my ears, maybe an ear infection. But I was born deaf in one ear so that could always complicate things. This was the first time I’ve had an actual panic attack (or in a sense a “worry attack”). It was ongoing. I was out of school for about nearly a week and a half to 2 weeks. It finally ended, I went to the doctor and a specialist. Nothing was serious. But, long story short, that was the first OCD Panic attack I’ve ever had. That was a few years before when I was back in elementary school.
I also had OCD affect certain areas as far as daily living in 1999 and year 2000. For most of my school days, I was on a modified education program. It was more modified when I was younger. But as I got older, I needed less modification. Math was my hardest subject and I needed the most assistance with it. Mum helped me with my homework most nights, even when I didn’t want to. I had meltdowns and more behavior problems when I was younger. But as I grew older, I certainly became more higher functioning. It was not without family, it was not without my pears either. Things were not always easy but all I can say to members of the community and advocates who read this don’t give up!! Ever!!
Your first mistake is to think you are defeated. Your second mistake as a parent or advocate is to think it can’t be done, or this or that’s not available so you quit. Each one of us on the spectrum is different. Could be in any shape or form.
Sadly, much of the school systems to this day fail to realize that every autistic person is different. The differences could be in behavior, social skills, temperament, abilities, just as much as every person has a different or similar body type or hair, but it’s much deeper and much more complex than that. For me, I’ve always had the classic autism hyper-focuses. For most of my life it has been the Military, plus the OCD plays into that well as well. But before that, the “Military Era” as I like to call it, I was interested in other things. When I was very young I was interested in doors, I would hang around doors in the mall or other stores when I was 5 or 6, and guide wires, on the way to my grand parents cottage. We used to have to stop and I would go out and look at the guide wire. Hanni, my sister, would be impatient wanting to get to the cottage to go swimming. Then it developed interests in the Titanic, disasters, and ships as I got older. I always had the background interest in the military but it never took full flight until grade 7 onward.
My second day of grade 8 was Sept 11th, 2001, which I must say was traumatizing to me and caused ripple affects in how I thought about things. Certainly this was an ingredient which sped up the military interest. Of course, being traumatized with shock on that day was a normal occurrence throughout the world. I was in a stiff state of shock most of the day. But, to use military analogies, Grade 8 may have looked like a small country border clash, but Grade 9 would be like a limited nuclear exchange.
The transition to high school was a large step not only because some of the modified programs I was on were shut off and assistance to me was reduced, but because my pears were in the state of high school popularity cliques. I was taunted and bullied in class after class. It is hard for any students first entering high school to deal with the cliques and the emotions that come with it. It is a difficult time. Classes and the curriculum were hard in places too, and mum had to repeatedly go in to get more help for me. Without family, I wouldn’t have succeeded.
A number of teachers at first were not understanding, or patient enough. Things got better over time, but the first 6 months were a perfect storm. Dealing with the pears, bullying, the curriculum and stress of all that, plus what I couldn’t help, my autism & OCD. Which added to this massive storm. For those that have dealt with similar scenarios directly or as the family to someone going through it, I fully sympathize and understand. In the first six months I believe I was more emotionally unstable. It’s in many ways because I believed my pears and friends didn’t care about me. A lot of the friends I had in grade 8 we’re distracted by the popularity game and didn’t have time for me. But regardless, I went to school everyday.
The problems I would have in class, such as taunting and things being thrown at me, were bad enough that sometimes I would lash out and get in trouble. Some teachers never did enough. Having to deal with the class as a whole was enough for them.
Some teachers would give me a lot of grief for being late in class or talking back. With my OCD being as bad as it was, I was a checker. Sometimes I would pass a doorway and have to go back and check it, or repeatedly check that my locker was locked. Especially the first 6 months I would be late often. Some teachers would be more understanding, some not.
Sometimes I would be sent to the office for talking back to teachers. I would say I was just defending myself, and was upset about these things. Calls home were worrying my parents and family. My mum and dad certainly. My behaviors even surprised me. I think it was that I really wasn’t talking about my feelings enough. About how I thought about things. About how I thought people – peers and teachers – perceived me. I also liked a girl that didn’t like me back the same way, so that added to the hurt feelings.
One day I stepped on a railing at school and balanced on it. A teacher that was a friend of mine came out to pull me off. It was at least a 20 foot drop onto solid floor that could have seriously injured me or cost me my life. I was upset and having dangerous feelings but I really wasn’t thinking of suicide to a large degree. It was more a cry for help. The drive to get known and to make connections was already ingrained in me. Good changes and evolution was coming.
Mum took me over to see a councilor. That did certainly help change things for the better. He was a smart guy by the name of Klaus. He was Canadian but born in Germany. He even during the first session realized some of my great strengths and potentials. My self esteem was in rough shape during that time period. Soon though I would feel better about myself, and actually feel even more of the need to meet people and to engage in more social activities. This was the start of me becoming an extrovert and extreme networker. I’ve had a number of teachers that were a key role in my life in high school. One of them to this day is still part of the “Critical Mass” of people that are influential in my life.
For the last number of years, up to today, my family and a number of close friends have been part of that “Critical Mass,” which has grown in strength and reach. Growing up with some of my best friends, Jon, and Max among others as well, has allowed me to reach so much further over the years in the public and social atmosphere. We would go to local bars and clubs regularly and for me being out and about today is a very frequent and normal thing as I have become a very outgoing person. I am also a very regular “gym rat” as part of that social atmosphere.
But with all of the things I’m involved in today, from the military stuff, legion, politics, government, and autism awareness, to security in my local area, this all wouldn’t have happened without family. The dedication of my mother and father, sister and brother when I was young is why I can now say the challenges I’ve faced have been beaten or can today. For those that are on the spectrum and don’t have good family support, there are other ways. The Provincial or state governments provide services for people’s with disabilities on a broad scale. There are brothers and sisters programs that are available to help. The government can provide assets and programs in general to help with these certain aspects, though some governments have more, some have less.
Currently in New Brunswick, there are no services directly for adults on the spectrum of autism. This is a major issue. My group in Woodstock is one of the only groups in New Brunswick that has an adult autism support group for autistics around 14 to above 35 etc. We are in the early stages of doing more activism. That is certainly what I want to do.
Let this be a step to change things for people with autism. If I can guide at least one person on the spectrum to find their “Critical Mass”, I’ve been successful.
My successes wouldn’t have been possible without Jonathon, Hanni Mama & Papa, and some of the greatest Friends.