Is It Tough To Talk About Autism?
Before entering school, Tom had an IEP (individualized educational plan). There was no question that he had special needs. There was no way he was going to "pass" as typical. There was no doubt that everyone around him not only WOULD know, but NEEDED to know that he was at least moderately autistic.
Over the years, he has become more and more capable of handling new situations and people. And in many contexts, he appears perfectly ordinary. At the store, the beach, the museum, no stranger would pick him out of a crowd. Until the stranger tried having a conversation. Then, within less than a minute, it's obvious that SOMEthing is different. Generally speaking, if Tom is going into a situation in which an adult must interact with him (classes, group activities, church) I explain the situation - and try to offer ideas and insights to avoid any problems. In some cases, the adult in question decides that teaching a child with autism is not for him or her - and that's fine.
This always seemed perfectly natural to me, and does to this day. That's why I was surprised to see, in response to a blog, more than one commenter saying that it is NOT EASY to "come out" as having a child with autism:
...you are completely wrong when you say that it is not hard for a parent to come out that their kid has autism. After my son was diagnosed I had people telling me all the time that I ” just didnt know how to take care of my kid and that autism is just an excuse parents use when they can’t control their kids tantrums.” I was blamed (even by a nurse) for my son not being able to talk. So it is not as easy as one would think to come out that your kid has autism...Reading this, I thought - "Wouldn't it be easier and simpler to just let those folks know what's going on?" But then again, I live in the northeast - where there are many organizations, support groups and therapists dedicated to autism. While I've gotten my share of adults who find the whole idea of a child with autism quite scary, I've also gotten an awful lot of support and understanding.
Have you found it difficult to talk about your child's autism? If so, what makes it tough? Is it the word itself? The idea of "branding" yourself and your child? Or are there other issues?
Comments
Initially,denial is the operative word, no matter where one lives. It is a combination of hope and fear that materializes and for us, the “A” word was the most frightening one of all. That is why I entitled my blog the “A” word. Our 180 degree turn coupled by acceptance, another A word, propelled our family, albeit unintentionally, in to realizing what an amazing boy we have (another A word).
Now our task is enlightening the world. A woman once looked at our child and said “There but for the grace of G-d go I” I retorted, “Are you saying better you than me?”
Well,she was correct, our child is lucky to have us, and we are so very lucky to have him! Amazing!
I think that initially it was difficult to discuss because my emotions were still raw and I was overwhelmed by all the “approaches” (floortime, aba, sonrise, all the therapies..I could go on) This was 10 years ago and it may be easier today to receive the diagnosis and move forward, but I would say it took me a few months to a year to go from diagnosis to speaking comfortably about it with friends, family and well-meaning strangers.
Now, my boy is 12 and I love who he is. He’s learning to have very basic social conversations and enjoys going out and does not have meltdowns like before…he’s learning to “deal with it”, just like everyone does.
Now, if he could just wash his hair by himself…..
We’ve a 4 year old girl on the spectrum. After receiving 11 different diagnosis ranging from NOS to “there’s nothing wrong”, we settled in on the A-word (despite our pediatrician who still maintains we’re wrong with that label).
As parents, we wanted to embrace ANY definitive label so that we could swing into action, provide the appropriate therapies to our daughter, and build a village of support around her and yes - around ourselves.
We did all of this.
Not by burying our heads in the sand. But by embracing all that life throws us and realizing that for every bump/set-back/retreat - there are definitive blessings and upsides that make us stronger parents and more grateful beings to have out daughter in our lives.
Yeah - the stuff of Autism is extremely trying. And yes, I’m often jealous of those parents who are immune to the realities of our lives.
Certainly for my daughter alone, I would trade all of the diagnosis and difficulties so that she wouldn’t be faced with the challenges that she’s already experienced in her young life.
In retrospect, I know that it’s made us all much more appreciative of each day, each little victory, and each person with whom we come in contact with.
To the extent that we can make a contribution to others who are along side of us, or who may yet to come into this world - we fight for them - and for our little girl.
I’ve been open from day one … It’s just easier. Plus, Jack is on the more severe end of the spectrum, so it is quite obvious…
That said, I completely respect those who would rather not discuss it so openly. I think it comes down to personality … circumstance … many factors.
Just like our loved ones on the spectrum, we are all so very different.
Being “normal” really means following a set of rules that society has agreed on. And there’s a spectrum of autism.
If the kid can’t obey the rules, they need a handler if they’re out in public. Much like a llama shouldn’t be left wandering down the street on its own, but could be OK if there’s someone along with it to tell you what to look out for. Of course you’d warn people the kid is autistic.
But if the kid CAN obey the rules (with effort), those rules are worth learning. The rules let you get more out of society. It makes sense not to say they’re autistic, so you don’t game the system for them, so they learn the right rules.
When I was a child with autism, there was no diagnosis available. I was considered intelligent but wilfully and spitefully peculiar by adults, and despised and brutally bullied by my peers. I can more or less “obey the rules”, since I did so for 20+ years, but that doesn’t mean it was easy. It very nearly drove me mad. Had those around me had some notion that there was a REASON I was different, things might have turned out differently. It’s not about “gaming the system” or having an excuse - it’s about having a genuine reason which people should respect.
I was raised to not talk about things considered “improper” or things it would be “shameful” to talk about. That was stupid and shortsighted of my parents. I had no idea about how to handle money, because it was “impolite” to talk about it. I couldn’t ask them the millions of questions about boys and relationships because it was embarrassing for them, so I was taken advantage of and abused.
I am not ashamed of my son. He has nothing to be ashamed of. AND PEOPLE NEED TO BE AWARE AND EDUCATED.
I hit the “send” button too fast.
It’s my experience that things that are not talked about have a stigma.
If we parents don’t talk about our children with autism as naturally as we talk about their eye color or the colic in their hair or their personality traits, or whatever, we attach a stigma to it.
I will not allow my son with autism to be stigmatized.
I will also not allow him to be blamed for things he cannot control.
I will not be blamed for bad parenting when it is not bad parenting that makes him throw himself to the ground and tantrum or ignore me when I’m talking to him.
I simply don’t understand the not talking about it. Arguing for “privacy” sounds suspiciously to me like the shamefulness my parents were so eager to avoid.
I’ve had the opposite experience. Maybe since my daughter was diagnosed 11 years ago is why. I couldn’t find enough people to talk to about it. I wanted to talk about it, but people either didn’t know what it was or didn’t want to talk to me about it (when I wanted to)! Thank God for the internet, and support groups. Not too long after her diagnosis, I found support through very kind people I became friends with online.
I don’t use the word “Autism” to describe my son because of discrimination. Try to get your child admitted to a private school, even one for children with learning disabilities, using the Autism label. I have tried, without success. So, I have learned to use euphemisms such as my child has “social” issues or “executive functioning” issues. With better results, I must add. Am I ashamed of my son? No, I simply do this to protect him from a world that has not yet accepted children with Autism. It will be my son’s choice, not mine, to decide when and if he is ready to tell others.
I do think that there is a luxury, when your child is very high-functioning, of being able to decide who gets to “discriminate” or not against your child because of his diagnosis. My son is considered “high-functioning” because he’s verbal, but a private school would totally be out of the question.
private schools are not always equipped to have special ed kids and many do not even have a special ed department. Also, those laws for kids would not help a child in a private school.
I also have never liked either term HF or LF. My child is also verbal but that alone does not suggest functioning level, but many schools term a child HF if they are verbal.
I myself have never found it too hard to speak about autism, I found it more difficult for other’s than it is for me. I found the more openly I spoke about autism without hesitation, the more my son is capable of accepting who he is.
Private schools, in my experience, really do seem to have a prejudice against the ASD diagnosis. Like Grace, I knocked on many, many doors of private schools specializing in special needs. As soon as they learned that (a) my son is not dyslexic and (b) he has an ASD diagnosis they told me, in essence, “we don’t serve his kind.”
I can well understand a parent choosing to call autism “a learning difference” under those circumstances. It’s incredibly frustrating to have your child turned away, sight unseen, in favor of kids with significantly more serious learning and behavior issues!
Lisa (autism guide)
The United Autism Foundation (UNIAF)is organizing a unique expo called the Autism Art Gallery. A contest is currently under way for Children with Autism and Special Needs. Please be in touch with me regarding any questions and for submission guidelines.
The reason I find it difficult to be forthcoming about my son’s autism diagnosis is not wanting people to pity me or my son.
If you care about labels then maybe its hard to talk about.