Welcome to the return of my Autism Awareness Parent Interview Series! My goal is to interview two parents per month. During these interviews, we will cover a specific theme regarding autism awareness.
This week I present to you Devon who is a 23-year old mother of “an amazingly creative, brilliant and endlessly happy little boy, Xander, who happens to have moderate autism.” Devon says: “Every day, we grow more and learn something completely new. We have Xander’s different way of looking at the world to thank for that, most of the time.”
What is the first thing that comes to your mind when you think of autism awareness?
Because I am a visual person, the words “autism awareness” floods my mind with images of puzzle piece logos, shirt designs, and posters spreading information about ASD. I think about the good and the bad ways media have spread autism awareness but also about how a simple experience with a mom on the playground can spread understanding rather than unwanted sympathy and ignorance.
How old was your child when he or she was diagnosed with autism? How old is your child now?
Xander was speech delayed and by 18 months he was enrolled in speech therapy. It’s only with therapists in the house daily that they started to see signs of autism that we thought were just quirks. At two, he was diagnosed with PDD-NOS. This was recently changed to autism just before Xander turned three.
Do you think your child’s day-to-day behavior is manageable or challenging?
Xander is my rollercoaster kid. There are days when he’s incredibly high maintenance and others when he’s very laid back. There’s really no telling which side of the bed he will wake up on, but overall he’s a happy fun loving kid. Remembering that helps when he’s being disagreeable, knowing that there’s probably an underlying reason for his behavior.
How do you respond when your child has a meltdown?
It was suggested to us by our developmental pediatrician that we respond to all acts of frustration, defiance, or meltdown behavior like Mr. Rogers with a frontal lobotomy; slow, deliberate and insanely calm. This is the ideal I shoot for, especially in public. I try to cancel out everyone around us and do a robotic-like scan of our surroundings in an attempt to figure out what’s causing the problem.
Have you had a Functional Behavioral Analysis done for your child?
Yes. We have through his wraparound service provider.
Does your child have a Behavior Intervention Plan in place? If so, how easy or difficult has it been to carry over the strategies suggested at home and at school?
We do have a BIP in place but since he has not yet started school, it applies to home life and therapy times. The methods they suggest for inappropriate behavior help but at times it is hard to explain to him exactly why things aren’t going the way he wants. This leads to added frustration.
What is your general opinion about discipline as it relates to children with autism?
Xander knows there are rules and will attempt to test his limits, that’s something he will get corrected for. But for throwing a fit due to him not understanding me is not something that I’d ever punish him for. Even in situations where sensory issues or anxiety have just put him in a bad mood and he doesn’t want to follow simple rules, I hesitate with discipline. Instead, I try to trying to find a way to improve the situation and get the rules followed at the same time.
Do you believe that sensory processing issues impact your child’s behavior? If so, how?
I completely agree that sensory issues affect behavior! See answer above.
What is your opinion on the use of seclusion and restraints to discipline children with autism in the school setting?
Xander is just starting school this summer but I can honestly say the mention of either method makes me cringe. I have not used “time outs” as a means of discipline in his home life because I know he prefers seclusion. So how exactly is allowing him to space out and have personal time, help teach him a lesson? As far as restraints, the idea makes me incredibly uncomfortable. That seems like a lazy simple way to solve a problem when trying to understand the child and the issues at hand would benefit all parties much more.
What advice can you give to other parents who may be having difficulties managing their child’s behavior?
I truly believe “autism” must mean “teach parents patience” in some ancient language. Staying as calm as possible and trying to get to the source of the behavior is by far the best suggestion I can give. Also to know your limit. It’s okay to walk away (assuming your child is safe and not going to self-harm) to regroup and mentally be able to go back into the meltdown zone. Never be afraid to call doctors or therapists for suggestions or help. Having a developmental pediatrician has been one of the best changes we’ve had in our journey so far.
Do you have anything you would like to share with people who may have an unsympathetic reaction to your child’s behavior in public?
I’ve been blessed to never have more than some hard stares when it comes to public meltdowns, but I love the business card idea many parents are adopting. Having a card that explains, “I’m upset, super sensitive to light or sound, overwhelmed by large crowds: I’m autistic!” helps take away a lot of the anxiety of trying to verbalize what’s going on to others.
What impact (if any) has autism awareness had on your family?
I feel that by wanting to spread autism awareness we have come to grips with his diagnosis and have embraced the challenges that lie ahead. By looking at autism as something to be proud of, informed about and accepting of, we have become better parents. Living in denial or looking for a way to “fix” our son was not going to help any of us and only lets others know it’s okay to look at them as “broken” also.
Is there anything else you would like to add?
Just that, while autism does not define our loved ones, it is part of whom they are. By accepting and embracing autism, we are accepting them as a whole.
Thank you Devon for sharing your thoughts with us.
You can find Devon at:
Please show your support for Devon in the comments and stay tuned for our next interview for the month of June.