The Fears and Frustrations of Autism ParentsLisa Quinones-Fontanez
When my son, Norrin, was first diagnosed with autism, I cried every night for weeks. My body curled in fetal position, trembling, with my husband beside me, trying his best to offer consolation even though he was scared too.
I accepted autism a long time ago, but acceptance doesn’t have an ending point. It’s an ongoing road. And that road stretches far beyond the horizon.
I can’t tell you how many nights I’ve laid awake in bed worrying about the future. And while I no longer cry myself to sleep every single night, I still cry. And I suppose I have many more sleepless, crying nights ahead.
People ask if I hope there’ll be a cure for autism. Even with all my worries and fears, I can honestly say that I don’t care about a cure. I just care about Norrin. Having a kid with autism doesn’t mean that I’ve given up on hoping for my son. Ironically, all of my hopes seem to have been born from all of my fears.
I’m not writing this for sympathy – autism parents don’t want anyone to pity us or our children. I’m sharing because I’m hoping that our honesty will help others understand. I hope the more people understand, the more our worries and fears can be alleviated.
Raising a Kid with Autism Isn’t Easy 1 of 15
I know what my fears and frustrations are. I asked a few other autism parents to share their thoughts also. And I am so grateful they did - it makes this journey a little less lonely. Click through to see the fears and frustrations of autism parents.
We Won’t Live Forever 2 of 15
No parent wants to outlive their child. But when your child has autism or any other special need, outliving your child by a day doesn't seem so bad. There is so much autism parents need to think about: creating a will, a special needs trust fund, guardians you can trust to care for your child the way you would. Kpana shares: My biggest fear is what will happen to Angel when me and his dad are gone. We just submitted names of guardians for his special needs trust. It took us months to fill out the paperwork because it was a serious reality check.
Can We Afford This? 3 of 15
Autism is expensive. Parents can easily go into debt seeing therapists and specialists since many don't accept insurance. There are private schools and hiring lawyers if you have to sue the Department of Education. And we need to save money to ensure our children are taken care of financially after we gone.
Not Enough Family Restrooms 4 of 15
Family restrooms are few and far between. The older my son gets, bringing him into the ladies room will raise eyebrows. Unlike parents of typical kids, I don't wonder when Norrin will be able to use public restrooms alone, I wonder if he'll be able to use them alone.
Our Children Are Targets 5 of 15
Kids with special needs are more likely to be bullied in schools. Shirley's son will be ten in a few months, "My biggest fear is how will my son make it in this world? I fear that as he gets older, he will be bullied, or taken advantage of because he is naive."
Will They Be Able to Form Friendships 6 of 15
Norrin doesn't need to be the popular kid - he just needs one kid who gets him. Kids with autism have difficulty with socialization. Norrin may look - and in some ways act - like a typical seven-year-old boy but in many ways he functions at a three-year old level. As he gets older, I wonder how this will impact his relationships. Will he have a friend? Or will he walk alone?
Will They Find Love 7 of 15
Sometimes my dad talks about when Norrin grows up, gets married and has children of his own. I never say anything, this is a dream I'm almost scared to dream. It hurts to think that Norrin may never know romantic love.
Will They Be Given Opportunities 8 of 15
As parents, we see the progress our kids make. We know what our kids are capable of, but will others see it too? Will our kids be given the opportunity to succeed? Chantel shares, "My biggest fear is that [my son] will forever be limited because of his diagnosis and the stigma attached with it. I just want him to be given a fair shot to TRY everything."
The Cost of Health Care and Services 9 of 15
So much of what our kids need isn't covered by insurance. Autism parents have to learn how to navigate a system in order to get the appropriate services for their children. It's usually a toss up between what they need versus what's affordable. It's tough not being able to afford "the best" for your child. Dealing with insurance companies and paperwork and all the red tape takes up a lot of time and is extremely frustrating.
Will They Be Safe in Public Schools 10 of 15
It's been more than a month since Avonte Oquendo (a non-verbal, autistic teenager) walked out of his New York City public school. His disappearance has caused many parents to lose faith in the public school system. Autism is an invisible disability, and it's easy for many autistic kids to pass for "regular." But when there is a population of kids with autism in the same building as "typical" kids, officials should be trained and prepared to act accordingly. Everyone in the building needs to understand what autism is and what it "looks" like. If the Department of Education is not prepared to do that, then maybe they should start creating public schools exclusively for kids with autism and/or special needs. Nell shares, "My biggest fear is someone hurting [my son] in school and he will not able to tell me because he is non-verbal."
Judgement From Others 11 of 15
Autism is an invisible disability. When our child acts out in public, others don't see a disability, they see a "bratty" kid and lack of parental control. As an autism parent, I've been judged by strangers, therapists, educators, family and even friends. People are quick to point, fast to talk and yet so slow to understand. There are moments when being an autism parent can feel incredibly isolating because it's as if no one understands.
Lack of Autism Awareness 12 of 15
Most people are on a "need-to-know" basis and autism isn't usually on the top of the list. And it's frustrating. Especially when the people who don't know what autism looks like are people who should. Like doctors, nurses or teachers. On Norrin's first day of kindergarten at a public school, his special education teacher told me that Norrin didn't want to make friends. And Lizzette shares, "I can't stand going to the doctor and having to explain to the staff that he is Autistic. How about they read the chart?"
Watching Them Grow Up 13 of 15
Norrin will be eight in January - it's inevitable that he's growing up. His head meets my shoulder and I can see the early stages of puberty. I'm not going to lie. I am scared. When Norrin was little, autism wasn't as obvious. At three and four years old, he could run around the playground and no one would be the wiser. But at seven? The difference is obvious. Watching the gap grow further between Norrin and his typical peers isn't easy. And it makes me wonder if or when Norrin will ever catch up.
Letting Go 14 of 15
I hold Norrin's hand at all times, too scared to let go. The world is too big and Norrin is a boy who can be so easily lost. Walking in crowds with Norrin fills me with anxiety. Recently, Senator Chuck Schumer proposed that the Department of Justice fund GPS tracking devices for kids with autism. I don't know about you, but I'm all for it.
Will They Be Seen and Appreciated for WHO They Are? 15 of 15
My son is such a great kid. I know how bright he is. I see how sweet and funny he is. I see his true personality because I take the time to look and try my best to bring it out. But will others see him the way I do? I can only hope so.
Do you a child with autism? What keeps you up at night?
Catch up with me on Babble:
- 20 Female Role Models for My Son
- Why I Take My Kid into the Voting Booth on Election Day
- Is It Time To Put My Autistic Son on Medication?
- We Need More Family Restrooms
- Should Children with Autism Wear GPS Tracking Devices?
Read more of Lisa’s writing at AutismWonderland.