More information, please.

Most of the frequent articles and reports about autism are sensational and include little accurate information about autism.

Here in California we’re having a drought.  Every article about the drought contains at least a brief reference to how a drought is defined, how much rain we’ve had compared to previous years and suggestions for conserving water. Some say that many of the drought related articles are politically inspired, but the information is still there.

Maybe the drought isn’t the best comparison, topic-wise.  I’m sure everyone has heard that the actor, Philip Hoffman, died recently. A sad loss, and I am not trying to relate the topic of addiction, merely the information given in the articles. I learned more about heroin in just a couple of articles about Mr. Hoffman’s death, than I learned from reading 70′s rock star biographies.

There was another kind stranger autism article recently. A restaurant manager gave a mother and her autistic daughter a free meal after another customer complained about the child being too loud. Of course I applaud the support or acceptance that this stranger offered.  But I also resent the tone of these stories is that the kind stranger is doing a marvelous favor and paints the child and parent as a tragic situation.

These articles could have included an explanation about how self-stimulatory behavior, like yelling, helps people, and not just autistic people, deal with the sensory overload they can experience in public.  How about an interview or link to an autistic person’s account, like this post, Quiet Hands?

There are too many stories about autistic people, usually children, going missing, often with a tragic end. The public needs useful information about autism and wandering, especially when a news report is a about a human being who is currently missing. All news reports should contain descriptions of the missing person using respectful and meaningful terms.

Describing an autistic eight year old child as being like an infant is demeaning to the person and inaccurate information to provide strangers who are helping in a search. Tell us how the missing person is likely to respond. If the person is not going to respond to traditional communication methods, offer alternatives, such as the person’s favorite familiar items, songs or recordings. These details should be in articles about anyone missing.

I’d like to see law enforcement professionals answer questions like: How soon should a concerned parent or caregiver call when a child is thought to be missing? What about an adult? If we see someone who fits the description, or spot what may be an important clue, how should we respond?  How can parents and caregivers of children prone to wander keep our children safe and still encourage them to interact with the world? What kind of training is given to law enforcement professionals to handle situations involving people with disabilities who may respond differently than the general public?

I wonder if these details are left out of some articles because they are good bait for controversial comments.  There are many topics other than autism that have the same information and controversy challenges.  So this is me, stepping up onto my soapbox to ask for more accurate information. Don’t assume we know anything. Especially on the internet, give us links to define terms, not links to other articles.

I’ll keep reading and someday, the information will be there, and hopefully a new trend will be started.

She can play anywhere

Playing in a bathtub at Home Depot.

Playing in a bathtub at Home Depot.

Last summer we got rid of the stroller, and we’ve been able to do most errands and shopping as long as we are quick. We have been working on spending more time out in the community.

It can be difficult, but we’ll encourage her to touch appropriate things, choose her own items at the store and even play. We only let her play for a few minutes, and we’ll give her warnings and that seems to avert meltdowns, though she’ll often want to return to a favorite spot in a store.

 

Loving the purple curtains at Sears.

Loving the purple curtains at Sears.

We’re getting a lot of entertainment out of curtain departments lately. I am careful that she doesn’t make a nuisance of herself and we don’t stay long.

Dancing in the strobe lights at Spencer Gifts

Dancing in the strobe lights at Spencer Gifts

We went back to the same mall two weeks in a row and spent quite a bit of time in this store. Luckily it was empty and the same nice girl was working both times and she had no problem letting R. dance in the lights.

Keep your article, LA Times

I don’t usually post about articles or current events but after reading the article in the LA Times Unraveling an epidemic, I can’t keep quiet.

This article seems to imply that the journalist thinks parents of children with autism are some how cheating the system.  The parents’ pursuit of services for their children is portrayed in the most negative way possible.

These services aren’t housecleaning or a massage. These are actual therapies that have been proven to be able to help children with autism and other disabilities.  I think it does people with autism and their families  great disservice to write about them this way.

Studies have shown that investment in early intervention saves money over the life of the person with a disability.  I wonder why this article did not include any of that data.

Research shows investment in early intervention saves money long term

Independent reviews of early intensive behavioral intervention

Early intervention for toddlers with autism highly effective

Early intervention lessens impact of autism

List of articles and studies suggested by wrightslaw.com

I also think that the quote from Bryna Siegal is a good example of how an autism diagnosis is subjective and how professional’s subjective opinions are both driving and keeping our children from getting services they need.  She does not mention any evaluation methods, it seems like she just came to her own conclusion about this child.

Can you imagine trying to get help for your daughter and being told by a professional that her problems (what a terrible word for a professional to use) stemmed from obsessive compulsive disorder and poor discipline at home.   And then being told there were plenty of other children in greater need.

I don’t know that Ms. Siegel told the last part to the parent, but the fact that she said it in an interview with the LA Times puts it out there.  Did Ms. Siegel suggest cognitive behavioral therapies could help this child?

How did she come to the conclusion that poor discipline was at the root of this girl’s issues?   The child already had a diagnosis of Aspergers.  Did Ms. Siegel test the child’s auditory  processing abilities?  I would think that a professional would know that what appears as discipline problems can also stem from receptive language issues, anxiety and need for sameness to the point they don’t understand what to do if an instruction is different.  If somehow Ms. Siegal had intimate knowledge of how this family interacted at home, and indeed there were issues of poor discipline, why did this professional not offer the family some advice?

I wonder why this article did not mention that people with autism can additionally be diagnosed with obsessive compulsive disorder.  One study showed that 17 % of people with autism also have OCD.

I also wonder why this article did not at least briefly mention that there are commonalities between autism and OCD.  This study found that attention switching problems may reflect both symptom overlap and a common etiological factor underlying ASD, ADHD and OCD.

I do realize that there can only so much information that can be in one article.  I think it is unfortunate that people with little to no knowledge of autism will read this and find nothing to encourage them to be accepting of autism.

Noisy feet, happy kid

We went to the zoo over the weekend.  It has been a few weeks since we last visited.  R. was really excited and wanted to get out of the stroller almost immediately, which is rare.

She walked the entire length of the zoo.  She was running, skipping, prancing and doing this stimmy feet dragging thing she does.   It was bugging me because she was getting out of control and prone to tripping often.  Which is not the end of the world, but the concrete at the zoo is particularly good at ripping jeans.

After I told her many times to slow down and walk nicely she looked at me and said No, no no and pinched my mouth.

I realized that I was annoying her as much as she was annoying me.  I also realized that I was trying to get her to act normal.

So I found places where she could run.  But when we were walking around the zoo looking at the exhibits l insisted she go slowly but let her skip and shuffle to her heart’s content.

She was so happy, she smiled and laughed and talked (some of which I actually understood) and had a great time.

I read this post Quiet Hands today.   Our ABA therapists don’t use those terms.   But it made me think that I need to consider what it is that I am asking R. to do or not to do.  As a parent sometimes it is hard to know when to draw the line.   I’m so grateful that she is starting to tell me in her own way when I’m being controlling.

I accept autism, and I have expectations

I’ve been thinking about what acceptance really means to me.

I have posted about acceptance before:
Giving up on greener grass
On acceptance
A letter to NT parents

I accept that my daughter has an autism spectrum disorder.  She will be impacted by autism her entire life.

What does it really mean to me to accept my daughter’s autism?
It means that I love her unconditionally.
It means that I don’t believe she will be cured or recovered.    (Not to be confused with progress.  I do believe she will progress)

Just because I accept autism, does not mean that I have given up on having expectations for my daughter.

As part of a parent training I took with a local support organization we heard a panel of speakers talk about various aspects of disability and discrimination.  Joana Fraguli said to us that every single one of our children, regardless of disability could go to college.

At first I kind of laughed to myself.  It is hard to think about college when a trip to the library is still unpredictable.   But then I realized that Joanna is correct.   College is not a topic I’m going to dwell on right now, but having autism doesn’t rule that out.

R. has a significant language delay that is part of her autism.   I accept that communication is a challenge for her.  Of course I hope that she will communicate more and more as she gets older.   I expect her to communicate at the best of her abilities (which are changing).  I expect that I and anyone working with her will prompt her to do so.

R. has some sensory seeking behaviors that are part of her autism.  I accept that she needs the input from whatever activity she is seeking.   But I expect her to choose activities that are safe and reasonably appropriate.    If she does not, I will redirect her.  When I catch her chewing on her sleeves or a paper towel roll, I’ll provide her with something to chew – food or a chewy tube.   When she wants to jump on the couch which is dangerously close to the window I’ll redirect her to her trampoline or even a bed.

What about acceptance in the community?

Again, I think it comes down to expectations.   At first glance, R. does not have an obvious disability.  The general public expects her to act like all the other four year olds.

I accept her challenges, and I provide her with the supports she needs to go out in public – taking her security items, sitting in the stroller if she wants.   When she puts her fingers in her ears I just ignore it (as long as she is happy) I don’t draw attention to it.

I expect the general public to leave her the heck alone when it comes to these things.  As long as she is not harming anyone, we have every right to go to public places, even if we look a little odd.   I expect that when people in the general population have more experiences with people who present differently that they will come to some degree of acceptance.

There was a lady in the elevator at Safeway and she was totally distraught that R. had her fingers in her ears.  This lady acted like R. had sprouted antlers.  Maybe the next time that lady sees a child with fingers in their ears she will not be so shocked.

I expect R. to behave when we go out.  That means I expect she will not cry and scream, throw things or deliberately misbehave.   If we go to a restaurant (so rare) or a party or something and R. is unhappy, we will leave.    But we will try again.

I think that the general public does not really understand autism, and it is only through personal experience that people can come to some level of acceptance of people with disabilities or even people who are different.

R.’s teacher told me about a few general ed elementary girls who walked by the class and asked if there were students with autism.  The teacher said yes and the girls said aww that is so sad.   The teacher actually got angry and said, it is not sad, these kids are not sad or unhappy.  Look at them, they are all having fun!

Personally I think it is kind of sad that these girls are so unaware of other students at their school.   But that is probably a whole different topic.

We went to the playground and there was a boy probably 8 or older there with his Mom and baby brother.  He seemed very bored, talking to all of us looking for attention.  He was playing with a remote control vehicle, and it got R.’s attention.  She said wow and gave him the sense she was interested so he started performing for her.   She followed him around for a while, and when she stopped he actually came back to her with the vehicle trying to get her attention.

He did not even acknowledge her lack of language. He was not phased when she ignored his attempt to hand her the controls.  What an incredibly accepting kid!  How did he get that way?  Of course I could not ask his mother.    But meeting that boy gives me great hope.

I accept autism, and I genuinely hope that the rest of the world will come to do so also.  But I think that the general public has to learn to expect autism, before they will be able to accept it.

A letter to NT Parents

I wrote this about a year ago.  I didn’t post it here before because I thought it sounded more crabby than I intended.   For autism awareness month I dusted it off, and posted it to the Mom list that inspired it.

Dear Parents

My four year old daughter has autism.  Maybe you know us.  Even if you never meet us, considering the number of people with autism is currently 1 in 110, you will meet people with autism in your lifetime.

A while ago someone on a Mom list was concerned their child had autism.   I was kind of shocked by some of the responses.  Autism is all the rage now. Really?  Do you think it is trendy and fun to have a child who does not speak?   Is it cool to know my child may never live independently?   Do you think all the children who are being diagnosed are undeserving of the services to help them?

Someone else said  Your child doesn’t have autism – he’s great! I get that you probably do think a child with autism is quite awful.   But I feel the need to tell you that I think my child is great.  Better than great actually, but I’ll spare you my gushing.

My daughter is a person, she has likes and dislikes and she also has real challenges with communication.   Sometimes she is overwhelmed by sounds and sights around her.  I do my best to keep her away from stressful situations, but I do feel like it is important for her to be able to go out into the community.   If she screams or has a meltdown I will leave with her.  But every once in a while I really need to buy milk or something that can’t wait .   Yes I know she is loud.  Please have a little patience.

You may tell me that only babies have tantrums like my daughter, and if I would just discipline her she would behave.   I don’t expect you to understand that she has had years of behavior therapy.   But I hope that you can understand that part of having autism is immature development.   In many ways, she is like a baby or a toddler in terms of her ability to communicate.

Please don’t get in my daughter’s face while she is in the stroller and tell her she is too big and too old to be in a stroller.   Not that it matters, but she’s not seven like you think.   I’m sorry your world-view is so narrow that the sight of a large child in a stroller offends you.  But it is not my problem, please deal with it on your own time.

I’m going to take my daughter to the playground, and she is not going to act like your children.   When my daughter sees your son playing with a bouncy ball, she wants to play with the ball and with him, but she doesn’t know how to ask.  She will take the ball from him as her way of asking.  I’ll be right there with her, and I’ll tell her the ball is not hers, and I’ll make her throw or roll the ball back to your son.   I’ll admit it must look strange to you, that my child can’t do something so simple as say play with me, and that I have to be so involved with her.  In my fantasies (which occasionally come true) your son would play with my daughter.  Just pass the ball back and forth a few times.  It is a public playground after all.  It is your son’s choice, and if he doesn’t want to play with my daughter, that is fine.     But please don’t give us dirty looks, drag him and your other children away, and tell them they have to stay on the opposite side of the playground from us.   You are teaching your child that it is okay to be rude to people who are different and also that they should be ignored.

My daughter enjoys watching your daughter and her friends climbing on the equipment and hanging upside down.  She also likes it when your son brings his remote control helicopter to the playground to fly.  I know she looks a little strange, her body quivers with excitement and sometimes she’ll jump up and down clapping and and saying yay.   The kids don’t mind the attention, and I keep her safely out of harms way.   Please just let her watch.

I’m not looking for pity or sympathy.  But I do hope for a little patience and understanding.   You will meet people with autism, they will be your child’s classmates and your neighbors.  Autism is not contagious, in fact studies are showing that typically developing children actually benefit from exposure to children with special needs.   I’ve seen this first hand.  It’s never to early to teach tolerance, and that is a gift that will continue to give through a person’s life.

Giving up on greener grass

A friend and I each attended different support groups for the first time.  We both went there with the feeling we knew what we were doing for our children and left with quite a few questions.  I do think it is valuable to connect with other special needs parents, there’s a world of information out there that only seems be transmitted by this secret society.  I like to hear about other children and their therapies and activities.  But sometimes it is hard not to get into this endless loop of worrying if the therapy that parent X mentioned or the activity that parent Y mentioned is the missing piece of our intervention.   Never mind that we probably could not afford it and have no time in the schedule for anything else.

It can be difficult to make decisions about my child that could potentially be life-altering.  I think it is easiest to be confident when R. is making progress, and when things slow down I start to wonder about all the other things we could be doing.   One of the facilitators of the support group said that it was important to remember that our children are individuals, and what worked for her child wasn’t going to be the answer for ours.  I think she’s right.   I don‘t think I’ll ever be able to stop wondering what if we did this or that.   But now that I can look back on a year and a half of various therapies, I do feel like I can be confident about what is working.

So when I meet another special needs parent and she tells me her child is making great progress because of feline therapy and jello wrestling (yes I am making that up, and no I do not mean any offense to any therapy or intervention out there),  I’m going to think and say I’m glad that’s working out so well for your child.

On acceptance

A friend and I were talking about acceptance, and she said it seemed like I easily accepted R’s autism.   I don’t know about easy, but I do think it was easier for me than for my friend.  I suspect this is mostly because I never really fantasized about being a mother, at least not as an adult.   E. and I were married for nine years and had pretty much ruled out children when I got pregnant.

It seemed like I spent most of my pregnancy and even R’s first year just trying to figure parenthood out.   After she turned one, it was becoming clear that she wasn’t like her peers.   Now that I’ve spent more time with newborns, I realize also that she was not a typical newborn.

Of course I felt devastated when we did get the autism diagnosis.  I remember feeling like we were in one of those black and white cartoons with a rain cloud permanently over heads, while the rest of the world was living in a neon colored Normal Rockwell painting.   I remember how hard it was, telling people about it, hearing their condolences (boy that bugs me).  I wish I had started blogging then, so I could look back and determine the point when I could say she has autism without feeling a cold knife in my heart.

Like most of us on this journey, I remember reading the essay Welcome to Holland.  I knew it should make me feel better, but all I could think of was the closest I’m going to get to a European vacation is a trip to Ikea.   The essay that really helped me was Don’t Mourn for Us by Jim Sinclair.  I’ve read other parents who found this essay harsh, but for me it was  just what I needed to read.  He’s correct that grief does nothing to help my child. She’s not sad or upset about who she is, I would not want to be the one who teaches her otherwise.

I do accept my daughter’s autism.  I don’t love it or hate it, I just understand that it is part of who she is.  It seems like I have known something was wrong for more of her life than I thought all was right, so I have a harder time even thinking about what could have been. It is as if it has always been this way.   And just because I accept autism, doesn’t mean I’m worry or emotion free.