Did you know that parents of children with autism like it when you ask them questions about their experience? At least I do. Sometimes we get tongue tied when answering because autism is complicated, and because we are emotional. Here is a list of the 11 most frequent questions that I am asked, along with answers:
1) What is autism, and how severe is Matthew’s case?
Autism is a neurological disorder; not a disease. It is a broad spectrum disorder, meaning that people with autism can be a little autistic or very autistic. Thus, it is possible to be bright, verbal, and autistic as well as intellectually disabled, non-verbal and autistic. All share deficits to some degree in three areas:
- social interaction
- verbal and nonverbal communication
- repetitive behaviors or interests.
In addition, many have unusual responses to sensory experiences, such as certain sounds or the way objects look. “They” are not all alike. Individuals with autism have unique challenges, quirks, and interests. So it is hard for me to describe where Matthew falls on the autism spectrum. He is honest, friendly, hard working and very funny. He’s frustrated by his inability to figure things out sometimes, and that makes him angry. But he’s learning to keep how to ask for help, and I admire him for that.
2) How old was Matthew when he was diagnosed?
Matthew was 2 years old when we noticed that he wasn’t talking as much as most toddlers his age. We also worried about his intense interest in lights, gates and drains. Developmental specialists told us he was not autistic, but developmentally delayed. We thought that meant he could catch up. Matthew was not formally diagnosed until he was 5, and by then, we had figured it out. That was many years ago. Developmental specialists are able to detect autism much earlier these days.
3) How did you handle the diagnosis?
I was sad and scared, but determined to “turn things around”. We tried every kind of therapy, even those that seemed whacky. I wish I’d known someone like the future me to to turn to for reassurance and support. Parents now have tremendous resources-one of my favorites is THE THINKING PERSON’S GUIDE TO AUTISM.
4) What do you think causes autism?
I’m on the side of science, and at present, most researchers think autism is caused by a combination of genetic and environmental factors – and it’s quite possible that different people’s symptoms have different causes.
5) How has having a brother with autism affected Matthew’s brothers Andy and John?
It was especially hard for Andy, who was just two years younger than Matthew, for many years. The two played a lot when they were babies, and then Matthew withdrew. Andy was also teased about Matthew’s peculiar behavior. John, who is 7 years younger than Matthew, was never at the same school as Matthew, but home life was chaotic to be sure. Andy is now 25, and John is 20. They are great with Matthew, and are more tolerant than most of the differences in others.
6) I hear that 80% of couples with a child with autism get divorced. How do you stay married?
I’m not sure anyone really knows the real statistics, but HERE is how I stay married.
7) How do you handle the stress?
It is a challenge. Best thing I ever did you manage the stress was to talk to a therapist. Finding helpers is also crucial. It’s very important for everyone in your family that you take care of yourself. I am also a great believer in exercise. From time to time, I let myself off the hook. “I am too busy, I have no time” I tell myself. I recently bought the coolest thing, a FITBIT and am back on track. I will be writing more about this soon. Exercise is an antidepressant. Period.
8) How in the world did you learn to be so patient?
I believe that everyone has more patience and they find it when they are tested!
9) Do you worry about what will happen to Matthew when you die?
Yes, but I have made plans,(more about that later) and you can too. Start by reading the Autism Speaks Transition Tookit.
Just a few weeks back, our family emergency plan was tested, and it passed the test. Read more about it HERE.
10) One piece of advice for parents of a newly diagnosed child?
Reach out to parents who have been in your shoes. They can help you. My hand is raised!
11) What is one thing you wish you knew during the challenging times that you know now?
I need to mention three things:
a) Try to remember how hard it is for your child to adapt to the “regular” world.
b) It get’s better. I enjoy Matthew so much.
c) When you come across people who stare, or snicker, or worse, realize that they just don’t understand what you are dealing with. I’ve learned that it is better to show them how you relate to your child rather than tell them off. One of my most unforgettable moments was at the Oakland Airport Baggage claim after a long and meltdown rich flight with Matthew, who was a teenager at the time. A man that I thought had been staring at us disapprovingly all day tapped me on the shoulder and said ” I’ve been watching you in action today, and you have taught me a lot. Thank you.”
The THINKING PERSONS GUIDE TO AUTISM IS COMING TO MENLO PARK!
I’ll be reading from The Thinking Person’s Guide to Autism at K epler’s in Menlo Park Tuesday June 25 at 7:30pm along with editors Shannon Des Roches Rosa, Jennifer Byde Myers, and Emily Willingham.Fellow contributor Susan Walton will also be on the panel. We’ll do a bit of reading, and have plenty of time for questions and answers. We’re hoping there will be other Bay Area contributors at the event as well.
Do you have questions? Contact me HERE and I will do my very best to help.
FOLLOW ME on FACEBOOK and TWITTER.
You can also read the first three chapters of A Regular Guy: Growing Up WIth Autism HERE.
You’ll be hooked.