Most parents of kids with an Autism Spectrum Disorder (ASD) have no problem talking about their child’s disorder. ASDs are Pervasive Developmental Disorders, which when you meet someone who has one or has a family member or friend with one, mostly means high functioning autism, Asperger’s Syndrom, and true or classic autism, but also includes Rett’s, childhood disintegrative disorder, and PDD-NOS (pervasive developmental disorder – not otherwise specified).
Now, unfortunately for those of us with children with an ASD, the general population is woefully under educated about these disorders. And it is okay to ask someone about them. The really unfortunate thing, however isn’t that people don’t know and understand what an ASD means, it is that they THINK they know what it is and try to tell us what it is.
So, as advice to perhaps well-meaning individuals, here is a mom’s list of what you shouldn’t say to the parent of a child with an ASD.
“Wow, I’m so sorry to hear that.”
Their child didn’t just die. And we are not “sorry” because our child was diagnosed with it. For a lot of us, it is a relief to be able to identify what is going on with our children. It is fine to say, “I’m sorry that must be hard!” or “I’m sorry he/she is going through that!” Identifying with the difficulty that the family is going through is okay, it is hard, and can be very difficult. What is not okay is expressing sympathy as if you were talking to someone whose child has passed.
“But he/she doesn’t LOOK autistic.”
Most ASD parents get this one and it dries us all crazy. There is no look to a person with an ASD. The only difference between a person with an ASD and a person without one is that they have a difference in the way their brain works. Most people who make this comment are thinking of something like Down’s Syndrome where there is a physical manifestation of the disorder. They are two separate and completely different things.
“Focus on the positive and stop talking about the negatives! You shouldn’t label your child like that!”
A fellow mom got this one after going to the doctor’s office and explaining to fellow waiting room inhabitants. The label is there for description, and we are very well aware of what “labeling” in the negative sense can do to our kids. We, more than anyone else, know what can happen when people focus only on the label. HOWEVER, when we tell you “My child is Autistic” or “my child has an autism spectrum disorder” we are not apologizing, and we are definitely not “labeling” to excuse. Our children have what can seem to others to be odd behaviors. Sometimes these behaviors can make others uncomfortable, and we tell you so you can realize they aren’t doing it to annoy, it is because it is part of their condition. A lot of ASD kids have OCD symptoms (Obsessive Compulsive Disorder). So if you are sitting next to a child that has to get up and sit down repeatedly, it is a manifestation of that. So is the child fixated on your purse’s handle because it looks like a spiral pattern. There are many different manifestations of these OCD symptoms, and we want our children’s experience AND yours to be as comfortable as possible.
“He/she can’t be! He/she can talk!”
This one is just plain ridiculous. Yes, some children with severe autism are unable to speak. That is by no means all of these children. In fact, children with Asperger’s Syndrome are usually very verbal, sometimes too much so, and have a very wide range of language skills. No two ASD children are the same, ever, so you’ll notice that when I’m speaking I use words like “usually” and “mostly” or “most”.
“You know, doctors just make that stuff up to make money.”
Yeah, because we love spending money and time on doctors’ visits, therapy, medications and treatments. Seriously, come on folks. We don’t just agree with the first doctor we come across that mentions it. Getting a diagnosis isn’t walking into an office and walking out with a diagnosis. It takes months sometimes to get an accurate diagnosis. There are tests for the child, questionnaires for parents, teachers and doctors. A diagnosis is a lifelong condition and we and our children are going to live with. Having a condition like this isn’t “fun” and we would never seek something like this without having good reason.
“Oh, so he/she is retarded?”
Yes, mental retardation is possible with kids with ASDs, but again, not every child with an ASD has this problem. And lack of communication abilities does not indicate if a child has mental retardation or not. A child’s mental abilities are not indicated by verbal abilities alone.
And on the opposite….
“Oh, so he/she is a genius?”
Again, yes, it is possible to have an autistic savant, a child who is hyperfocused on one subject area (a common occurrence with many ASD children). However not every child with an ASD has the “rain man” level of ability. To assume as such is kind of annoying to hear all the time.
“He/she just needs to be around other kids, and socialize!”
Socializing does not change the fact that the disorder exists. Children on the spectrum have problems with social skills. And you can’t force a child to have empathy. Children on the spectrum often do not understand social cues like those not on the spectrum. Body language, facial cues, and other subtle indications given in daily interacts are very hard for them to read. Some are insulated in their own private world, and cannot interact normally. Being around other kids is not going to “fix” these kids. Yes, they still need to be around other kids, and being in an environment where they can interact with other children can help, but it has to be done with care as far as the child’s tolerances.
“If you spanked/beat/disciplined him/her more, he/she wouldn’t act like that.”
As an attachment parent as well as a mom of an ASD child, this one gets me. I’m not in favor of spanking at all because it is ineffective from a psychological perspective, and it doesn’t work like parents believe it does. Spanking, in general, offers short term benefits, and no long term benefits. In general, children with ASDs have meltdowns in response to pain or they will be completely insensitive to it. So they will laugh at a swat on the rump or go into a meltdown and scream, flail, or flop for however long they do. And we spend a lot of time teaching them how to interact socially, hitting them undoes all the work we do trying to teach them not to hit others when they are mad. These children are very logical, and what is done to them, they will do to others. The same for things they hear, they will often repeat them again and again.
“Oh, he/she has [ASD]? Vaccines cause that, aren’t you sorry you vaccinated now?”
This was a recent thing, and was debunked. The research involved was flawed and unethical. Those of us with a child on the spectrum are well aware of this research, and while some of us choose to vaccinate, others do not.
“So when do you send him/her away?”
I’m not even really going to talk much about this one because it is so insensitive and ignorant. Thirty – forty years ago, these children were often institutionalized, but today, we work very hard to keep our children with us. Yes, there are very severe cases which may require living in a group home environment with constant medical supervision, but these cases are few and far between.
“You know what you did during pregnancy caused that.”
…seriously? I mean, come on. There is no proof that anything in particular causes ASDs. If there were, you would think every doctor’s office would have a big sign that says, “Don’t [insert activity here] during pregnancy!” just like we have the signs to not drink or smoke during pregnancy. There is no known cause. There are speculations, but no proof. So telling a mom that using artificial sweeteners/drugs/nitrates/fish/mercury/wheat during pregnancy gave their child Autism is not going to help.
“So what did you do to your kid to mess him up so bad?”
The idea that bad parenting leads to the behaviors exhibited by these children is prevalent in our society. These kids are not spoiled. They don’t have parents that let them do anything they way, in fact, most parents of children with ASDs do more with their children every day than any parent with a normal child.
“Oh, you just want the SSI benefits.”
And we have the inevitable argument that people seek a diagnosis just to get money from the government. While yes, there are people out there that abuse the system, those of us that seek SSI for our kids generally have need of it. From transportation to and from therapies, special diet foods, to supplies for our child which can range from occupational therapy equipment, pull ups for those who aren’t toilet trained, sensory stimulation and control equipment, there is a lot involved in taking care of a child with ASDs. The money that someone gets in SSI isn’t just spent on fun and games. Much of it is used to help their child and make their life better. And yes, sometimes it is used to take them places for fun. They are children, after all, we are not going to keep them away from having regular childhood experiences.
AND my favorite (and perhaps the one that most people don’t even realize is insulting…)
“Well, I hope there is a cure some day.”
So, we’re going to learn how to change the way neurons in the brain fire? Last time I checked, there isn’t a way to alter neurons and add axioms and dendrites to existing neurons. I know, I know, I hear it already. They’re just being sympathetic/nice, etc. Well, let’s take a minute. These children have a difference in their brain that makes them the way they are. Saying we need to “fix” or “cure” them is like saying we need to “fix” all the people with red hair or dark skin, or even being a certain gender. The difference in physical. And no, by giving our children medication and therapy we are not trying to “fix” or change them at all. We are trying to help them cope with a world that doesn’t accept them as different. We are trying to help them develop as individuals and utilize their amazing talents the best that we can. We are trying to help them reach their potential with all the resources we have at our disposal. The medications help them focus, help them stop getting fixated on objects or thoughts, and help them think clearly, the therapies help them interact with others in a way that will make their interactions with others the most pleasant as we can.
In no way, form, or fashion, are most of us trying to “cure” our children. Yea, there are some out there that hope and pray for a cure to be found, but honestly, why cure something that is just a way they are? Do you see people trying to cure mental retardation? No, because it is just a difference in the way that child is mentally. We can try to prevent it in future generations, but we have to advocate and educate people about our kids more than anything.
So what can you do if you meet me on the street and you see my child, with his medic alert bracelet and I say he has an autism spectrum disorder.
Ask me about it. I’m more than happy to talk to you about, as are most parents of children with ASDs. If you don’t know, ask. If you’ve heard a misconception like those above, ask about it. It is fine to say, hey I heard this about autism, is that true? And I’m more than happy to explain that it is or it isn’t and why that is so.
But please, please, please, don’t think you know more about our children than we do. That is perhaps the most insulting thing any parent, not just those of us with special needs kids, can hear from anyone, friend or family. If you don’t live with a child 24/7, don’t assume you are right. You are free to give advice but when a parent says, that doesn’t work for us, accept it. Don’t argue with them about why it should be done this way or that, when they’ve already said we don’t do things that way.
So in the end, what can you do? Be a little more sensitive and tolerant. We, and our children, go through and put up with a lot on a daily basis. No one is doing this for attention, and we are all doing the best we can. So, keep your opinions to yourself, and give us a hand instead of glaring at us when our child is having an inevitable meltdown. They aren't bad kids, they have problems with a lot of different things, and you can't assume you know what those things are.
All ASD children are different. More than anything, never expect two to be the same. Be kind, and treat them like human beings. They are amazing, awesome, and unique people, and if you give them a little time to get to know them, you will be amazed at what you find.
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