You’ve seen them. They are ahead of you in line at the grocery store, standing next to you in the school parking lot waiting for their child; they are at the doctor’s office, next to you at church, and helping you at the cell phone store. “They” are parents of children with autism.
With 1 out of every 68 children having a diagnosis on the autism spectrum, you have probably encountered them and their parents at some point. Because autism is a spectrum disorder, the severity to which each child is affected varies greatly. Some children suffer from the social anxieties, but are otherwise high functioning. Some children have extreme verbal delays and exhibit “typical” autism symptoms. Others have trouble with sensory processing. As the saying goes, if you’ve met one person with autism, you’ve met one person with autism.
My 7 year old was diagnosed almost 5 years ago, exhibiting severe delays in his expressive and receptive language skills (it’s a fancy way of saying he is non-verbal.) He also frequently exhibits symptoms such as flapping, stymieing, and sing-songing. Over the time since his diagnosis, and even with the amount of information available to them, I find that people still ask the wrong questions.
What not to say
1. Don’t ask “What’s wrong with him/her?”
I’ve heard this question on numerous occasions, but it never loses its sting. There is nothing WRONG with my child. “Wrong,” by definition, means not in conformity with fact or truth; incorrect or erroneous; Contrary to conscience, morality, or law; Unfair; unjust.
My child with autism has a medically diagnosed condition which impairs his learning, but he is still sweet, loving, and amazingly unaffected by society’s view of him. He still climbs into my lap and rests his head on my shoulder. He loves to swim, likes playing on his iPad, and loves Disney movies. Would you ask someone with cancer what is “wrong” with them?
2. I am not a super hero.
People have the wrong impression of special needs parents in general, but me in particular. Yes, we have different things to deal with, but we are parents above all else. I forget to send lunch money, sign permission slips, and check homework. I resort to eating out more than I should. I don’t get enough one-on-one time with either child, and I feel like I’m failing most of the time. Success, in my house, means both kids go to bed at the end of the night with full bellies and limbs intact.
3. “He’s a boy….they usually talk later…..my nephew didn’t start talking until…..I’m sure eventually….”
People say this to me with great frequency. The most important part of being a special needs parent is being realistic. Yes, I do hope that one day my child with autism will be able to engage in a conversation with me, but I also know that there is distinct possibility that he won’t. I’ve accepted that. It doesn’t change how I view his successes or him in general. The possibility of him not talking is not ideal, but it is not the worst thing that I can think of for my child.
4. “It’s the vaccines.”
I’m not going to debate about this topic. I have my opinion (and scientific fact) about whether or not vaccines cause autism, but I made the choice to protect both of my children from life-threatening diseases without hesitation. Insinuating that my choice caused my child to be autistic is a slap in the face. This brings me to my next topic…
5. “Hey I sent you this article.”
There is a ton of information out there about autism and its purported causes. The problem is most information is not definitive, and it reflects on the causes and not the cures. It is caused by diet, vaccines, pregnancy age, genetics, premature birth, mercury…..I could go on and on. No one knows how my child with autism got autism. Generally, these articles point the finger at one person; me. At first, I devoured whatever information people sent me, but I found each article only compounded the guilt that I already felt and gave me no real answers. Eventually I stopped.
What are some truths?
1. We like to talk about our kids.
We are parents. We are advocates and champions. We want to educate. In February, I got a tattoo on my wrist of the autism awareness ribbon, and have found that it encourages conversations with strangers regularly. I am more than happy to tell you about MY experience with autism and my experiences being a parent to a child with autism. But be careful. Nothing makes me quite as emotional as talking about how amazing my TWO children are, so I might get teary-eyed during our conversation.
2. Nothing is quite as isolating as being a special needs parent.
The majority of my friends have typically developing children and I will never begrudge them that. But they don’t understand about IEP’s, insurance reform, or PECs. They don’t understand what it is like to draw stares and accusatory glances when you are out in public. It’s hard to explain to them that sometimes I am just completely emotionally overwhelmed.
3. Special needs parents don’t want pity.
I wanted a child, and I was able to have one. I am fortunate enough to experience the love given and received as a parent. I know what a gift that is. My child may be different than others, but he is still my child.
What should you say?
1. Tell me about your experience. Do you mind if I ask you some questions?
Yes, please do and I would love to. (See #1 above)
2. Is there anything I can do?
Yes. Educate yourself. Donate your time or money to any of the great local and national autism charities. Offer to watch my children for a few hours so I can get a break. Listen while I talk about my child with autism things that you may have no idea about.
3. Your child is doing great, making improvements, etc.
We celebrate our children’s milestones, just as any other parent would. We gain joy from the smaller things. We love to share those successes with others and have them feel joy too.