Monday, November 12, 2007

Beyond FAMILY: Quick Questions for Parents of Children with Autism

I’ve been chatting with Kristen over at From Here to There and Back about what parents of children with autism might like to communicate to those of us with little or no experience in this area. Any readers who’d like to chime in are more than welcome.

As Kristen noted in one e-mail, there exists “tremendous diversity and a wide range of opinions and thoughts and hopes within the autism community.” Despite the fact that the Autistic Spectrum covers a wide variety of disorders, people outside that community tend to group all people with autism into one category. This sort of “lumping and labeling” tendency, of course, leads to misunderstandings and often discrimination. Here at BEYOND Understanding, we’re all about exploring such misunderstandings in order to expose them and (hopefully!) contribute in a small way to dispelling them.

If you have a child or children with autism, please consider any or all of these questions:

What are the most hurtful misconceptions you run into on a regular basis?

If you could explain one thing to the general public about autism in general or your child/family in particular, what would it be?

How do most people treat your child in public, and how would you prefer to see your children treated?

If your child were to act out in public, would you prefer strangers ignore the behavior or offer to help in some way?

Any insights will be greatly appreciated!! Thanks for stopping by.

Photo © JacksMum at The Last Thing to Go is a Sense of Humor


Anonymous Anonymous said...

okay. i'll give this a go!

1. the most hurtful by far is that my child is assumed to be an undiciplined brat or bully who gets no attention at home nor help with limits, how to take turns, share, and be kind hearted. little do these people know how MUCH time is spent with my guy on these very things and how much kindness and gentleness defines his true nature. little do they know that the difficult behaviors have their origins in sensory processing issues, developmental delays, ie, lack of neural connections, complexity, and the lack of dynamic intellegence and the ability to peform all sorts of lightening fast information processing.

2. the most common misconception about my child is that he would be socialized if only he were in school, that an ability to self-regulate, co-regulate, read and interpret body language, and navigate the complex world of social interaction is something that he would simply "pick up" through osmosis. in the typical world, that's true, but not so for those with ASD.

3. that the stresses on a family dealing with autism are enormous and often hard to see on the surface, that these families often feel isolated and stretched, that these families experience all the same feelings of that those with typical kids feel--worry, hope, concern, pride, admiration, irritation, boredom, elation, etc. mixed with some monumental concerns about their children's ability to make their own way in the world, make meaningful connections and have meaningful work, that often the concerns are more simple and profound: what will happen to my child when i die? who will be looking out for them like i do? with my eyes, the ones that SEE their beauty, their worth, their value, their potential, even if they utter not a single word and behave in ways that people can't understand or don't want to take the time to understand.

the two wisest things i ever heard an autism expert say was:

(a) put the relationship first
(b) see all behavior as communication.

4. people treat fluffy as they would any other kid most of the time because his disability is largely invisible unless he's triggered (and then can yell or push or throw things or act floppy and fall down or lick things inappropriately) or overwhelmed in a setting with too many people or struggling to find his way 'in' with other kids and then he can be treated with impatience and fear and judgment. some parents look sideways at me and usher their children away. i heard a woman at the library the other day say to her little girl, stay away from that boy, stay away from him, only she was talking in french and must have assumed i couldn't understand her.

5. when we have a hard time in public which doesn't happen that often for us, i would prefer if people would ask if there's anything they can do. it helps break the isolation, the separateness. it helps unite us as part of one team, the humanity team. it takes the sting out. it says, i get it. i've been in sticky situations too. i know it will pass. can i lend a hand in the meantime.

12:47 PM  
Blogger Sherry said...

You are so wonderful to open this to bring shows your compassionate heart.

12:57 PM  
Blogger Sustenance Scout said...

Sherry, thanks for your kind note! You made my day.

Kyra, thanks for your wonderful answers! It's AMAZING how much there is to learn about this. K.

1:24 PM  
Blogger Marla Fauchier Baltes said...

A neat idea for a post. I wish people would just not worry so much about it all. If they want to be our friends they would find out that we are great people and our daughter has much in common with their children.

I do think people have to understand that schedules are often changed at the last minute and often times getting together is more difficult to arrange sometimes. It is just the way for our family. If she has a seizure we may have to cancel at the very last minute.

Many friends don't put up with that but it is necessary to be our friends.

I wish parents would take more time to discuss communication differences among children and people. If it takes someone longer to find their words or if they don't communicate in the same way other children do it does not mean they are any less important. That person still has something to say. I suppose in order to do this they may need to read up a little on autism and at least be educated to some degree.

I would never tolerate my child making fun of anyone and I hope other parents teach their children the same. I think most kids with this 'making fun of' behavior learn much of it from their own parents in one way or another.

Not judging is good too. Don't assume that you have the answers as to why someone is autistic. If someone comes across as judging in regards to the child's diet or vaccines or something like that it is a real big turn off and sign of ignorance.

The funny thing is that people who are interested in discussing these types of concerns are usuaslly the people who handle everything very well to begin with.

I have never had any problems being judged for homeschooling our daughter. At least not to my face.

I think people should remember that most people who have children with special needs have researched till they are sick of it and know way more on their child's diagnosis/health concerns than they ever thought possible. It is not necessary for a friend or teacher or anyone to give advice unless it is asked for. I think this is probably the case for most parents of children. Unless someone asks for advice don't give it. I don't mean for that to sound harsh.

If you want to offer help then by all means do so. Most parents of autistic children are tired and could use a helping hand.

Very interesting blog. I will be back!

2:38 PM  
Blogger kristen said...

1. most hurtful: that people assume my son's behavior is willfully bad or that they assume he's spoiled, undisciplined or just plain weird.

2. if I could explain one thing about autism it would be this: autism is as varied and unique as each life that it touches. There are common threads, but most of the time, ASD manifests itself in unique and surprising ways. And not all of it is bad. Or needs to be fixed. Or changed.

3. most people treat my child like any other kid and on a good day, that holds true because my son's disability is largely unnoticable. But on a bad day, people tend to move from treating him just like any other kid to assuming any mix of negative thoughts (see answer to question #1).

4. I would prefer someone look me in the eye and say, "man, we've all been there" or "boy, this same thing happened to me the other day" or simply "hang in there, this too shall pass" because, let's face it, what parent hasn't ever had to deal with a public scene of some sort. It's all a matter of degree.

Thanks, Karen, for initiating the dialogue.

3:41 PM  
Anonymous -Brian- said...

I do not have a child with autism; I am a autistic person, and, as Estee (in her Blog, "The Joy of Autism") has tried repeatedly to point out, autistics, themselves, should never be exluded in discussions that could affect them for years to come--indeed, throughout their lifetime. Therefore, the most common misconception that I run into, even to this day, is that only parents and professionals can, in any way, "understand" autism, and that autistics, themselves, could not "understand" what their life could be like. That is simply a false idea that has be propogated for the past fifty years.

The other hurtful senario that has been most common over the years is the idea (from behaviorists) that an autistic person can simply admit that his/her behavior is not appropriate and take immediate remedial action to correct that behavior at that moment. I wish life was that simple--that a person with pain could take immediate remedial action to end that pain once and for all; if so, all pain relevers would soon be off the market. However, that, as most of us know, is not the case, and an autistic person cannot simply "behave" himself or herself, as the underlying disability, itself, is not subject to the whims and thoughts of the person, but is a far deeper (often considered genetic) issue of which that person has little or no control. Therefore, when an autistic person is chastised for behaving the way he or she does, that only makes the autistic more isolated and more withdrawn from others. It's no wonder each autistic is characterized by "living in his/her own world".

4:02 PM  
Blogger Sustenance Scout said...

Thank you all so much for your insights. I'm so glad I posed the questions.

Brian, my apologies for not extending the invitation to bloggers and readers who are autistic. I've entered this realm through blogs written by parents of children with autism and was focused on the experiences of those with young children. Of course every person with autism deserves to be heard and I'm so glad you stopped by and commented!

Kristen and Marla, your input is also greatly appreciated! I'm looking forward to following up with a post that discusses the many concerns noted here and links to all your sites. K.

4:22 PM  
Blogger Niksmom said...

Chiming in from another parent perspective here, albeit slightly different.

Most hurtful is the misconception people have that b/c my son doesn't speak and acts in many ways like a much younger child (he is almost 4), that he is mentally retarded and doesn't understand what is being said to him or about him. At this particular age that may be so but he is also frighteningly smart and take in everything.

The thing I would like to be able to tell people (well, make them understand, really!) is that my autistic child's sensory issues or developmental challenges are not going to be the same as the next child and theirs won't be the same as the next one. And not every child responds to the same type of "intervention/therapy/medication/biomed/nutritional/treatment of the month" as others.

Sometiems people treat Nik like he's a kewpie doll and they want to touch him or they talk baby talk to him. Or worse, they keep repeating themselves over and over and over waiting for him to respond. When he doesn't respond, they ask "Does he talk? How old is he? What's wrong with him?" The lsat is the most offensive to me. I'd never ask someone "what's wrong" with their child! Treat my child with the same dignity and respect you expect to be treated with by everyone else.

As for the acting out in public, I would far rather someone ask if I need help than watch with judgment as I struggle. Yes, it has a children's hospital no less!

There is so much more that I would want to share--- no, my child is not a prodigy or savant, he doesn't flap and spin he is extremely social as long as he is comfortable and he gets very easily overwhelmed. And on and on...

And everything that Kyra, Marla, and Kristen said, too!

7:23 PM  
Blogger Jen P said...

After reading what others have posted, I feel like,Wow, others speak the same language we do in our house!! So I ditto what everyone has said so far (including Brian since my husband is an aspie) and I'll try to contribute something new.

What are the most hurtful misconceptions you run into on a regular basis? The lumping/stereotyping. I had a school Director say something like "we've dealt with children like this before but he wasn't violent." So it is hurtful when others see him as a demon child, yet, he probably has better manners than most typical 4 year olds. He can please and thank you me all day. I read an article that said "If you've seen a child with autism, you've seen one child with autism." For a flipside view, for those teachers (such as at church or former preschool) who are aware and sensitive to the issue, they go a little overboard regarding his disabilities vs abilities and let him get away with everything and change things around for him, taking away the structure that he needs which can very well lead to further issues. It's almost like they don't expect much out of him. This breaks my heart because he is brilliant, but can't communicate that.

If you could explain one thing to the general public about autism in general or your child/family in particular, what would it be? Be nice. Have compassion for both the child and the parents. We are all doing the best that we can just like parents of typical children. My heart goes out to my hub when he is parenting and he is struggling on how to say things to the kids. I have to remind myself that HE is also doing the best that he can.
Have patience when conversing with my child. You really have to pay attention and listen to understand what he's trying to convey. Rushing him makes it worse. And you can't assume what he says is actually what he means, so repeating what he says and asking confirming or yes/no questions can really help you dig down to the root of the topic of conversation. Treat him with love and friendliness even if he doesn't reciprocate it and don't take it personally.

How do most people treat your child in public, and how would you prefer to see your children treated? Most people don't know in the general public because it IS hidden until it is triggered. I want to see my child treated like a 4 year old. He wants friends too, he just doesn't know how yet.

If your child were to act out in public, would you prefer strangers ignore the behavior or offer to help in some way? Honestly, I've gotten to the point where it doesn't matter. Our family psych said that I will be judged for the rest of my life having both my son and husband diagnosed with ASD and my youngest with SPD. So my attitude is, if they judge, they judge, and that is something they have to live with, not me. I'm concerned about doing what is best for my child and if it is picking him up and throwing him over my shoulder so he doesn't kick me and walking him out of an overstimulating store, then that is what I have to do. I can't spend time to stress over what people think. I'm happy knowing that I know what is best for him and I try my best to do that daily. I pray that other people understand and can empathize with me, but I can't rely on that for solace, only that I'm doing the best that I can.

7:44 PM  
Blogger Sustenance Scout said...

"I pray that other people understand and can empathize with me, but I can't rely on that for solace, only that I'm doing the best that I can."

I believe you've nailed it with that line, Jen, and that many parents who read it will nod in agreement.

Jen and Niksmom, THANK YOU both for your input. I know you guys are swamped with other concerns and I really, really appreciate your help!

8:30 PM  
Blogger Mom to JBG said...

My answers will probably repeat some of what others have said so well above.

Most hurtful at first was being told over and over, "Relax, they'll grow out of it". That stage seems to have passed, thank God!

I'd explain to the public that even though my boys are still largely non-verbal, they enjoy Sesame St., Barney, etc. and have much in common with other kids their age.
Also I agree with the comment that parents of kids with autism have already done tons of research, and probably don't need advice about diets, supplements, and so on.

In public, I'd like a sympathetic smile or shrug. A sense of humor is what gets me through the public spectacles, and I'd rather share a friendly glance than see people trying their best to ignore the chaos of my family outings.

Thanks for asking!

11:40 PM  
Blogger Sustenance Scout said...

Mom to JBG, thanks for your comments! I just visited your blog for the first time and love it. The image of your one son signing "please" so sweetly as he looked for his yellow block will stay with me for a long time. And of course the Sesame Street "Sing" song. :) K.

8:35 AM  
Blogger Patti said...

these questions are insightful and thought provoking....great post.

10:18 AM  
Blogger Sustenance Scout said...

Thanks, Patti! K.

2:03 PM  
Blogger Amber said...

Hi, I'm just posting to say I sent you an email but accidentally put a comma at the end--so let me know if you didn't get it, ok? Thanks!


8:40 PM  
Blogger Sustenance Scout said...

I think I got it, Amber! K.

9:19 PM  
Anonymous Anonymous said...

This comment has been removed by a blog administrator.

4:58 AM  
Blogger Adoption of Jane said...

1. The most hurtful misconception to me is when people assume I don't feed him. He is real picky and when we tend to have holidays or gatherings I let him snack and wait until things are more calmed down and he is settled to try to get him to eat. Its a useless battle in a chaotic situation.
2. If I could explain one thing to the general public about autism in general I would say it is extremely important to teach your typical child about ours. It makes caretaking for your child a whole lot easier when the community is on the same page. It makes integrating into society easier. Also since Autism is now an epidemic they have no idea when it will touch their lives and the more knowledge the better.
3. In answer to the question How do most people treat your child in public, and how would you prefer to see your children treated?.. I am fortunate, on the most part the public is great with my son. He is at the cute age of 3 1/2. Its when the "cute" stage ends which worries me.
4. When my child acts out in public, I prefer help or keep your mouth shut. Help meaning if I am struggling with bags and trying to pick him up off the floor in mid-tantrum, ask if you could hold my bags. I prefer help with obstacles, not my child. That would escalate the situation to touch him. Unless you have something to distract him. If you give him a distraction such as a toy, or whatever, don't expect to get it back, lol.

7:41 AM  
Blogger Adoption of Jane said...

p.s. I agree with Kyra's first answer as well!

7:41 AM  
Blogger Sustenance Scout said...

Thanks for bringing me back to visit all these great comments, Jane! K.

8:54 PM  

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