Did you know that, according to the Autism Society of America’s Facts and Statistics page, more than 3.5 million Americans live with an autism spectrum disorder?
To put 3.5 million people into perspective for you, it’s the entire estimated population of the state of Connecticut in 2014.
Yet even though the numbers are growing and autism awareness is too, there’s still a frustrating amount of misleading autism advice, misinformation, untrustworthy autism support, and prejudice in America today.
Here at FirstPath Autism, it’s our job to gather and share the best possible information, research, and tips for you. But in this post, we’re addressing some of the worst pieces of advice we’ve ever heard.
Why? Because we know that, if you haven’t heard them yet, you probably will soon. If you can recognize and identify bad advice for what it is, it loses power.
That said, in many cases these bad pieces of autism advice are unspoken. They’re the implied, hinted-at undercurrents of conversations that leave you unsettled and frustrated.
So today, we’re bringing them out into the light so that you can see them for the falsehoods that they are.
Bad Advice #1 – You should allow your entire identity be subsumed by your child’s autism. As a parent of a child with special needs, you must be a saint, preferably of the martyring kind.
Where is this coming from?
Along the same lines, you may hear comments such as, “I don’t know how you do it,” or, “I could never do it.”
Where’s it coming from? Most likely, this attitude is coming from an acquaintance who doesn’t know how to relate to an autism family.
This person may have never met someone with autism, and they are afraid of what they don’t understand. They can’t imagine what it’s like for you to love your ‘different’ child unconditionally, so they see you as very self-sacrificing.
Don’t buy into it.
You might take the educational route, saying, “Look, I’m not an angel, I’m just a mom who loves her kid. But I understand that parenting a child with autism can seem daunting if you haven’t done it. If you’d like, I’d love to tell you more about my son.” Then share stories of your life together, demystifying your experience.
If you don’t want to get into the topic, you might simply change the subject in a lighthearted way. You could say something like, “Trust me, I’m only human. Want to hear about how I almost burned down the house trying to cook dinner yesterday?”
#2 – You need to find out exactly why your child has autism, so that you can have something or someone to blame.
Where is this coming from?
This idea may arise from family members who feel upset at the loss of the neurotypical child, grandchild, niece, or nephew they expected.
Perhaps news of the diagnosis took them by surprise, and now they’re seeking answers and a sense of control. They may not realize how hurtful their attitude is.
The answer is now.
Gently remind people that autism is complex, and that researchers are only just beginning to understand its significant genetic component.
Emphasize the idea that what’s important is to love and support your child right now, today. Put your focus on loving and supporting your child and securing support to help him or her grow and develop.
#3 – Since your child has autism – poor thing! – you need to smother and over-parent him/her.
Where is this coming from?
Probably a helicopter-style parent, or a person who pities all individuals with special needs. It may come from someone who is afraid for your child’s future and believes that he needs everything done for him.
Refer to the experts.
Remember that fostering independence is essential to good parenting. Remind yourself and others that your child is capable of learning, and persist in teaching him to navigate the world for himself.
As Temple Grandin says in her Huffington Post interview, “Temple Grandin On the Secret to Success for Kids with Autism,”
“For these kids with autism, I’m seeing them getting too coddled. I’ll go to an autism convention and a ten year old comes up to speak to me, and the mom does all the talking. I want to hear what the kid has to say.”
#4 – You need to tell everyone you meet about your child’s diagnosis and medical history, in great detail.
Where is this coming from?
This may come from someone with a gossipy streak, perhaps a friend or family member who doesn’t see the value in discretion.
Trust your instincts.
Recall that your child’s diagnosis is medical information, best shared on a need-to-know basis. Autism is a part of who your child is, yes, but it isn’t the whole story.
In some cases, saying, “My son is on the autism spectrum,” can build a bridge between people. In other cases, it’s unnecessary, even counterproductive. Trust yourself to know the difference.
#5 – Maybe it would be better for your family if your son was sent away to live … somewhere else.
Where is this coming from?
Fortunately, comments like these are rarer now than they used to be, but many people – particularly those who grew up in the era of institutionalization – still believe that people with developmental disabilities should be separated from their families and communities.
In all likelihood, this person hasn’t spent much time with anyone with autism. They probably can’t imagine how amazing your son is, and how much you love him.
There may also be an element of concern for you, and a desire to spare you the difficulties that come with being ‘different’. Beneath the ignorance lies simple fear of the unknown.
Be honest.
Respond as firmly and honestly as possible. You might say something like, “Our child belongs with our family and in our community.” Preferably with a bullhorn.
The truth is, you’re not only a parent, you’re also an advocate. By loving your child and including him in your community, you’re making the world a better place.
It may not seem like it, but you’re making a difference. You’re doing your part to ensure that these bad pieces of advice won’t be around for future generations. And for that, we thank you.
