“What is your name?”
“His name is Nicholas,” I always interrupt. “That’s a hard question for him.”
“How old is he?”
“He is 4/5/6. He is autistic,” I always respond with a smile.
“I’m sorry,” is almost always the response.
I have had this exact conversation with at least 50 people, if not more, in the last few years.
Speaking from personal experience, there are many challenges in caring for a child with autism. The world is an obstacle course, and we are always doing our best to navigate around the seemingly impossible hurdles. But, when Nicholas is making huge accomplishments, such as making his first complete sentence at the age of 6, “I’m sorry” doesn’t seem fitting for the occasion.
Can I suggest asking something like, “What are his favorite things?” “Could you tell me more about autism?” These questions are much more helpful to both of us. Questions like these might make me feel less like I want to hide from people who don’t understand. This might begin a more upbeat conversation. Most importantly, it might remind me there are people in the world who want to appreciate his greatness rather than emphasize his challenges.
How long should a military veteran mourn the loss of their limb during war, before they should find a reason to smile again? If this veteran gets a prosthetic leg and uses it to win 5th place at a marathon, do you greet him at the finish line with “I’m so sorry you lost your leg?” No. You congratulate him for one heck of an accomplishment. You commend him as much, if not more than, the 1st place runner, because he worked ten times harder, both physically and psychologically, for his 5th place accomplishment.
Why do people continually say “I’m sorry your son is autistic?” I wish people would stop saying this. He is an amazing boy. He is silly and adorable. He gives me a reason to laugh and smile every day. He is happily enjoying his life. Why are people sorry?
I realize that most people make their comments with good intentions. It’s difficult to ignore the empathetic feeling every parent must get with the thought of a child facing any sort of struggle. I will use a different perspective to make a point, however.
I’m going to stop a moment to warn you that I’m about to summon my sarcastic inner-bitch. Before I do, I’d like to tell you a little bit about her.
My sarcastic inner-bitch was once a very nice girl. Friends often called her a pushover. She was the kind of girl who could remain silent and smile when people made insensitive comments. If a person were being blatantly rude, she would sit quiet, patiently expecting that perhaps karma would find its way to teach a lesson sometime.
One day, “nice girl” found herself completely submerged into the world of special needs. She fought to get the appropriate diagnosis for her son, which took almost a year from the time she was 100% certain that something wasn’t quite right. She fought with the school district to get her son the appropriate education, which she’d once assumed, incorrectly, that he would be automatically entitled to. She struggled for years to learn and navigate through the ridiculous laws that directly affected the quality and availability of specialized autism therapy and services that her son desperately needed.
She argued with her family and friends who, filled with good intentions, maintained that she was making too much of nothing, criticizing her best efforts to help her son get the diagnosis he needed. Her efforts were only just the first tiny step toward getting the appropriate autism services.
At every turn, there was someone commanding her with the face-pointing “you need to” lectures. “You need to talk to a different doctor.” “You need to read this book” “You need to call this person.” “You need to get a lawyer.” “You need to talk to other parents and figure out how they do it.” What she really needed was for people to stop telling her what she needed to do, and instead, ask her how, or if, they could help her.
She consulted with every specialist she could find, trying figure out how best to help her son with each specific developmental challenge. Her outspoken friends and family, with good intentions, were always around to criticize her every attempt.
There were a few individuals in her life who were supportive and helpful, but their voices were completely drowned out by the tornado of criticisms relentlessly tearing into her. This exhausted, once nice, girl grew bitter and cold. Sarcasm was her new outlet. It allowed her to bypass the more difficult emotions to get out her feelings of frustration. “Nice girl” developed a completely new “sarcastic bitch” persona to help her get through the tough conversations.
“I don’t know how you do it.”
Really? You don’t know how I do it? Well, my jumping off of a bridge didn’t sound like it would cure my son’s autism, so here I am. Is that was you want to hear? How did you expect that I might respond to your comment?
“Are you sure he’s autistic? My cousin/sister/nephew/neighbor’s son didn’t talk until he was 6 and then he turned out to be really smart.”
Really? You think the doctors made it up? You think I’m completely wrong about the child who I’ve raised from birth, huh? What medical school did you graduate from? I also tried to apply to University of Wishful Thinking, but they said you took the last available spot.
“He looks normal to me.”
It’s great that you have been designated as the special person who gets to define the standards of normal. Now that you have deemed him “normal,” I’ll be sure to disregard the hundreds of pages of evaluations from specialists who have studied autism in depth, and I’ll let them all know that their efforts are wasted because you have evaluated him as “normal”. I am quite impressed that you have x-ray vision which allows you to see into my child’s mind to measure how his abilities measure up to your standards of “normal.” Good for you!
“He just needs more discipline.”
Right. I need to punish away the fact that he is mostly non-verbal. That will help him. Perhaps a good punishment or two will bring him up to speed. Maybe if I punish him, he will learn to pedal a bike and count to five. Perhaps if I had simply disciplined him more as a baby, he would have reached his developmental milestones, such as crawling (which he never learned to do) and maybe he would have walked sooner than 18 months.
“Have you tried spanking him?”
You think perhaps a good swat on the rear is going to cure his autism? Do you think he will speak more clearly if I spank him a few times? Do you think that he will be less overwhelmed by noise if I show him who’s boss? Do you think he will fall down the stairs less frequently if I spank him?
“He will grow out of it.”
No, he won’t. He may gain some coping skills, but he will always be autistic. I realize that this comment almost always comes from someone who means well, however, “denial is a river in Egypt.” Please go there and just leave us alone.
“What’s wrong with him?”
There is NOTHING wrong with him. He’s perfect. YOU, on the other hand… Plenty of things.
“Have you tried this [Some special diet name here]? I heard/read it cures autism.”
There is no cure for autism. I repeat, THERE IS NO CURE. Please say that to yourself over and over until it sticks or just stop talking. If this special diet did cure autism, don’t you think his doctor would’ve told me? Don’t you think that I would know about it? Let’s say it together. “THERE IS NO CURE FOR AUTISM.”
“[Name of person] also did [Insert behavior here] as a child, and he/she is totally normal now.”
When it rains, the sidewalk gets wet. Does a wet sidewalk always mean that it’s raining? No, it doesn’t. There are a million reasons why the sidewalk could be wet. If you are not a doctor, please realize that knowing a tiny bit about a complex disorder like autism does not, by any means, make you an expert. PLEASE UNDERSTAND THIS!
“You are an overprotective mom. You need to just take him to [a loud/crowded venue].”
You have no idea what a day in his body feels like. I don’t think you could last an hour. I don’t even think I could last an hour. Loud noise seems to invoke something like pain for him. Crowds of people overwhelm him to a point where he goes into a panic attack that can last hours and may even cause him to vomit. I am his mother. I will decide what he can and cannot handle. I will expose him at the rate that I feel is appropriate, along with the guidance of specialists who have done this before. The fact that you think I am an overprotective mother is your problem, not mine. Please be supportive or be silent. PERIOD.
“You’re lucky your son can’t talk. Mine never shuts up.”
I have heard this at least 20 times. No exaggeration. TWENTY times, or probably more. Do you have any idea how it feels to watch your child struggle on a daily basis because he lacks the ability to express his most basic needs/wants/desires? I don’t even have a sarcastic remark for this statement.
“Why does he always look so sad?”
Is being surrounded by judgmental people like you is supposed to put a smile on his face? It sure doesn’t put one on my face. Every person is different. Social cues are difficult for some children, regardless of whether they are on the autism spectrum. He doesn’t dictate what emotions you should be feeling, so please don’t dictate how he should be feeling or expressing his feelings.
“If you stop giving him preferred foods altogether, he’s not going to starve to death.”
Sensory Processing Disorder. Google it. Are you an expert on it? I know I’m not.
His brain processes the world differently. Unless you have SPD or you are an expert on the disorder, I am done listening to your unsolicited suggestions.
“Why did you vaccinate him?”
Andrew Wakefield is the doctor who made the FALSE claim that autism was linked to vaccines. He was found guilty of multiple charges. His false claims resulted in his own personal financial gain.
I believe that there were subtle signs of autism in my son at birth, before vaccinations. Nicholas and I have participated in multiple autism studies, and I have talked with many doctors and researchers on the topic of autism, leading me to my personal conclusions on these possible early signs.
In spite of the fact that I do not believe that autism is linked to vaccines, how is this criticism helpful? Do you expect that I might borrow the time machine from Back to the Future to change history? There is no justification for placing blame at this point. It’s just not appropriate.
My responses to these questions from friends, family, and strangers were all snide remarks, cultivated from my pent up frustrations. I don’t feel this way at every moment, but I do have the great desire to ignore the criticisms and allow more positivity to shine into Nicholas’s life. I myself have been known to inadvertently offend people on occasion, and I honestly feel that there is much to be said for good intentions, so I do my best to value intentions above words whenever possible.
Here is the message I am trying to convey. Please be cognizant of the things you say to someone who might be exhausted and overwhelmed from hearing the advice of people who read one article or once heard a third-hand story about someone with autism. The world of autism is overflowing with misinformation and criticism. You’d be amazed at how many insensitive comments both Nicholas and I have been subjected to. Judgments and opinions from people who are not specialists are NOT helpful.
I truly welcome conversation about autism. I’m always happy to educate and learn. I’m not able to talk to my friends very often because my son requires the amount of focus and attention that 10 children generally require. If you have a desire to say something, please say something encouraging. Feel free to ask a question. Or simply, feel free to talk to me as you would talk to a parent of a child who is not on the autism spectrum.
I don’t love my child any differently than any other parent loves their child. I just want Nicholas to be happy. I simply want to be able to enjoy the life I have with my beautiful baby boy, in spite of the diagnosis written on a piece of paper. If I can just replace all of the criticisms and judgments with hugs and encouraging words, perhaps I can free up my “inner-bitch” to take a long overdue vacation.
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