Autism: A family’s story

“There are things you can do that other people can’t, like name notes on the piano just by hearing them. And you are really good at math. Sometimes there are things we are good at and sometimes we have things with which we need a bit of help. So you really aren’t much different than anybody else.”

– Amy Zimmer, talking to her 8 year old son, Aaron

On 2 April, 2017, structures and buildings around the world will “light up blue” in recognition of World Autism Awareness Day and World Autism Month. Thousands of homes and communities will join the Autism Speaks campaign in support of people living with this condition. Throughout April, events and activities will take place to increase understanding and acceptance of people with autism.

Austism is a neuro-developmental condition that affects the way in which a person relates and interacts with his or her surroundings. It is characterized by difficulties in social communication, restricted or repetitive behaviours and unusual sensory preferences, such as staring intently at moving objects or avoiding textures or everyday sounds.

On the autism spectrum, some people may be mildly autistic and live relatively normal lives, while others may have more advanced learning challenges and require long-term support. Tens of millions of people worldwide are diagnosed with autism. Boys, on average, are five times more likely to have autism than girls.

The condition affects not only those who have it, but also parents, siblings, friends and teachers. One year ago, my nephew Aaron was diagnosed with mild autism. My sister-in-law Amy Zimmer has become an advocate for raising awareness about the condition and dispelling the myths that surround it.

In this interview, Amy shares insights and advice for those facing a similar situation.

1. How old is your son?

Aaron is 8 and will turn 9 in May 2017.

2. Could you please tell us about your son’s condition?

He was diagnosed with High Functioning Autism Spectrum Disorder (HFA). He also has Sensory Processing Disorder (SPD). These two conditions often go hand in hand.

3. Could you tell us about the diagnosis?

Aaron and Amy

In February 2016, Aaron was diagnosed with HFA which is on the milder end of the Autism Spectrum. Sometimes I like to say that his condition is also known as Asperger’s Syndrome because I find more people understand what Asperger’s is as opposed to HFA.

However, there is still some confusion as to whether HFA and Asperger’s are the same thing. When Aaron was diagnosed, the developmental pediatrician told us that the medical community is trying to move away from using Asperger’s and moving towards putting everything under the Autism Spectrum Disorder (ASD).

4. When did you first suspect that he might need medical attention?

The journey to diagnosis began with Aaron’s brother, Johnny. When our first son, Johnny was almost 3, we took him to see a speech therapist because we were concerned that he wasn’t speaking that much. He memorized shows, he could recite “The Cat in the Hat” from cover to cover even though he couldn’t read, but he would only speak in what I would describe as gibberish most of the time.

The speech therapist had diagnosed Johnny with autism after one or two meetings. She told us to take him to a pediatrician for further assessment. We first took him to our family doctor who agreed that he should see a pediatrician. After one appointment, he told us that Johnny did not have autism. Even though he memorized things, lined up his cars, had many of the classic symptoms, we decided to take that advice and as it turns out, it was correct. Johnny does not have autism. The speech therapist was not too keen to accept that opinion and I remember pretty much storming out of her office. It was a stressful and unpleasant experience.

Looking back, I wonder if our experience with our first son made us less cautious with Aaron. I suppose there is a tendency to be a bit more laid back with subsequent children but I sometimes wonder if we hadn’t gone through the situation with Johnny whether we might have noticed things more with Aaron. But hindsight is 20/20.

Things progressed fine with Aaron. He would speak, although sometimes in monotone, but he interacted with people and was meeting all the appropriate milestones. Potty training was a challenge but it was also a challenge with his older brother. I chalked it up to them being boys.

Aaron wasn’t the easiest toddler. Lots of tantrums. He once wandered away from me which was probably one of the most horrifying experiences I have had as a mother. He also fell off a 6-foot high playground and landed on his head. Luckily, there was no concussion but I don’t know if his autism is related to those events. He doesn’t have the best sense of the space around him and can be a bit accident-prone at times. He’s had stitches twice already.

When Aaron was in pre-school, one of his teachers raised a concern with me but I didn’t think much of it at the time. She told me at snack time he would often wander around aimlessly and not sit with the others. I remember saying to her, “Maybe he’s not hungry.’’

It wasn’t really until Aaron started junior kindergarten that things took a sudden turn. One day when I went to pick him up from school, he started to remove his shirt in the schoolyard. I was surprised and asked, “What are you doing? You can’t take your shirt off!’’ Well that turned into the most explosive temper tantrum he has ever had. I literally carried him kicking and screaming to the car. I was embarrassed, angry and confused. I didn’t know what was happening or why he would want to take his shirt off and react in that way.

From that day, Aaron has never wanted to wear shirts. It was a struggle to get him to wear one in the house; to this day, he still removes it as soon as we walk in the door. Fortunately, he is not as rigid about it as he used to be and will keep it on when we have guests over. We are alot more laid back about him not wearing shirts at home.

People gave us all kinds of suggestions. They were trying to help but it was also annoying. Why don’t you buy him cotton shirts? What about tight shirts? What about …? If my husband Greg and I had known the answer to this problem we would have solved it. Nothing we tried made any difference. We tried to let it go but we would often reach a point where we would get so frustrated it would always end in tears. Sometimes Aaron’s but mostly mine.

When Aaron was in senior kindergarten, his teachers raised more red flags. He made little eye contact, did not participate much in class discussions, rocked while sitting on the carpet, constantly held his shirt away from his stomach which affected his ability to get his work done. Reading that list of red flags just didn’t sound like the Aaron we saw at home. It was like he was two completely different kids depending on the environment. Our doctor said that sometimes when kids start school, behaviours such as these can appear or become magnified because there are so many new things with which to cope.

Our doctor determined there wasn’t enough to warrant further testing for autism so we let it go. What we could not let go was our frustration with Aaron not wanting to wear shirts. So we took him to see an Occupational Therapist who diagnosed him with a Sensory Processing Disorder (SPD). She has lots of experience with it because her husband and her son also have it. There are some who argue that SPD doesn’t exist but I know for a fact that it does.

At that time, Aaron was also afraid to go to birthday parties. I remember he once cried all the way in the car. I almost turned back but thought, no, this is silly, he’s going, What kid doesn’t like birthday parties? Because the doctor had removed autism from our radar, we probably pushed him more than we might have done otherwise.

We went along like that for two more years, trying to be patient and understanding of the “shirt issue” and the social anxiety. When he was in Grade 2, Aaron’s teacher and the special ed teacher suggested that we take him back to the developmental pediatrican to be assessed again for autism. There were certain things still happening at school that we didn’t see at home: little to no eye contact; not speaking up for himself or in class. I appreciated how difficult it was for them to tell me that. I felt relieved because deep down I knew there was something else going on and I think we needed someone else to say it.

That was November 2015. Four months later, Aaron received his diagnosis.

5. How did you feel when you heard the news?

It might sound odd, but when we heard the news, I felt relief.  We finally had the answers we were looking for.

Things made sense now. It was as though I had needed to hear the words so that we could move forward and get things done. The doctor said that many parents hesitate to get the diagnosis in the first place and I suppose she wanted to make sure we were ready to hear it.

For the two weeks after the diagnosis, I was on an adrenaline rush. I was looking things up, reading as much as I could, trying to join every support group I could find. I remember emailing someone in charge of family support at a place that helped kids with autism. I wanted to sign up for the monthly support group and discussion. The topic that week was “Adolesence and ASD”. The lady wrote me back and asked me to call her. She was so nice and said it was great that I was trying so hard to find resources and join groups and she really admired my enthusiasm; however, the teen years can be stressful and she felt that as we were only two weeks into a diagnosis, this wouldn’t be a good first support group because it might scare me.

I appreciated her honesty. A few days afterwards, I fell apart. I went to a friend’s house for an Oscar party and after a glass of bubbly or two I burst into tears. Everything just hit me. How would Aaron cope when I’m not here anymore? Would he be OK? Would he get a job? Would he be accepted? Would anyone want to marry him? I was overwhelmed with worry for a couple of weeks. I allowed myself time to cry, to worry, to imagine his life as an adult and what it might be like and then I decided to stop wallowing because that wasn’t going to help Aaron. I would take things one day at a time. And that’s what I continue to do now.

6. How has life changed since the diagnosis?

Looking back over this past year, I see all the positive changes that have happened because of receiving this diagnosis and I’m so grateful. Aaron has gone through Cognitive Behaviour Therapy (CBT) with a psychologist at a wonderful place called ISAND which helps kids with autism and other neurodevelopmental disorders. He has taken a social skills class at the Geneva Centre for Autism and is currrently taking part in a weekend program where he goes on outings with other autistic kids in his age group. He has learned strategies to cope with things that make him anxious and angry, and we are all far more patient with him. We have good days and bad days like everyone else but there are far more good days than bad now. So I would say life has definitely changed for the better!

7. Some people have asked you why you would want to “label” your son with this condition. What would you say to them?  

First, I have to say that question has never made any sense to me. Nobody would ask a parent why they would want their son to have access to the help and support he needs to live the fullest life possible. And yet, that is what they are saying when they refer to the diagnosis as labelling. The answer is self-explanatory.

If you are concerned about your child’s health, you go to the doctor and you figure out what help they need and you get it for them. It’s as simple as that. Getting Aaron diagnosed was an essential step in getting Aaron help. It’s nothing to be ashamed of or hide behind. Calling it a label is wrong. Labels are for food, not people.

8. Does your son understand his diagnosis?

Aaron knows what his diagnosis is. I believe he knew he was different before he got the diagnosis. I asked the doctor if we should tell him and she was hesitant. I felt that he should know because he already knew there was something going on with him. Besides, it’s his body, his brain and his life so he should know. I waited for the right time when I would have the right words.

One night I was tucking him in and I said, “Aaron, you know how sometimes you have some challenges? How you don’t like wearing shirts and how you sometimes have a bit of trouble controlling yourself when you are angry? Well it’s because you have something called autism and all it means is that your brain works a little bit differently than most people and things can be more of a challenge for you.”

His response was, “You mean, I’m special?”

I said, “Yes you are special, everyone is special in their own way. There are things you can do that other people can’t, like name notes on the piano just by hearing them and you are really good at math. Sometimes we have things we are good at and sometimes we have things we need a bit of help with so in that way you really aren’t much different than anybody else.”

There have been times since then when he has been frustrated, eyes filled with tears and said, “I don’t want to have autism anymore. It’s stupid.” My heart breaks when I hear him say that. But I remind him that without autism he might not have the unique abilities that he has and that in life we have to take the struggles with the things that come easy. That seems to help him.

I believe that being able to put a name to what is going on with him makes a big difference. I have met a few adults in the past year through my work that were diagnosed with Asperger’s late in life and they all told me the same thing: they wish they had known sooner because then maybe they wouldn’t have felt so isolated or strange or like there was something wrong with them. When I hear them say that, I know how fortunate Aaron is to have been diagnosed early and to live at a time when there is more awareness and acceptance for people living with ASD.

9. Is Aaron’s older brother aware of the situation?

Johnny knows that Aaron has autism. It has helped him alot to know this because before the diagnosis, things were not always smooth sailing with them. They still have their ups and downs like all siblings. We don’t make excuses for Aaron. We don’t turn a blind eye to behaviour that is unacceptable.

Sometimes it’s hard to know what is autism-related and what is just regular sibling rivalry!  But we don’t let Aaron get away with things because he has autism. There are times I don’t want to deal with the fallout so I might ask Johnny to bend a bit more, but I don’t do that very often. Johnny is a great big brother and he understands. I feel like in many ways he has matured alot in this past year and I’m proud of him. I’m proud of both of my sons. We don’t always get it right but when we make mistakes in our house we say sorry, we forgive and we move on. My motto with my kids these days is “New day, Fresh start”.

10. What advice would you give to parents in the same situation?

Take things one day at at time. Try not to get overwhelmed with the future. I’m trying to put into practice some of the things Aaron learned through the Cognitive Behaviour Therapy (CBT). The basic premise of CBT is that your thoughts control your mood which controls your behaviour. Therefore, if you switch negative thoughts with positive ones, everything else should fall into place. Easier said than done, I know! But it’s just a matter of putting it into practice and training yourself to think more positively.

I have been following alot of autism-related things on Twitter. Reading blog posts of parents of kids with ASD or even adults with ASD has helped me alot. I find it helps me be more understanding and patient with Aaron and helps put things into perspective.

I would also tell parents to go and meet other parents of kids with ASD! They are the only people who can truly understand what you are going through and it makes you feel much less alone!

If you have neurotypical children, it’s important to pay attention to their needs and anxiety. Having a sibling with autism can be wonderful but it can also be very stressful. Make sure your neurotypical child’s needs are met too. Sometimes it’s easy to become so wrapped up with the child who has special needs that you forget to pay attention to the ones who don’t, but they need you too.

Finally, don’t let ignorant comments from other people get to you. I chalk it up to them just not understanding. I use the ignorance of others as motivation to spread awareness and acceptance!

11. Are there any exercises or activities that you do with your son?

Mindfulness is very popular right now and it is being used as a tool to help people with ASD more and more. Aaron learned about it with his psychologist as well as in the social skills class he attended. We also practice deep breathing to help us all relax, stay calm and focussed!

12. Any final words?

The last thing I want to say is that I am certainly not an expert on autism. But I am an expert on my children. Soon after Aaron’s diagnosis, I came across the following in some literature I was reading: “If you have met one child with autism, you have met one child with autism.” It means that no two children with ASD are alike. My experience with my son might be different from someone else’s but my hope is that this interview will help other parents feel less alone and more hopeful that with proper help and support, things can get better!

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Julie Zimmer

Julie has extensive experience in nursing practice and education in a wide range of fields from intensive/coronary care, to medical-surgical to community and public health. Julie has Bachelor Degrees in Psychology and Nursing, and a Master’s Degree in Community Health Nursing Education. She has taught in faculties of nursing and in various communities in Toronto, Canada and in Geneva, Switzerland, and is a consultant to the International Council of Nurses (ICN). Julie also has years of experience teaching English as a foreign language (EFL) in addition to coordinating an English department in a Swiss private school.

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