Friday, March 28, 2014

7 Quick Takes Friday: Autism Edition




Yesterday a study was released by the CDC, using data from 2010, and announcing that 1 in 68 children are now autistic (that breaks down into 1 in 42 boys and 1 in 189 girls).  And as I read the various posts about autism in my news feed and scrolled through the latest in autism news I thought I'd dedicate today's Quick Takes to the topic.  So here are my rather random 7 Quick Takes: Autism Edition.

Disclaimer:  There is no one particular experience of autism.  Most of what is here is just mine!  Others may find they relate to a lot of what I've written or they may find that it has nothing in common with their experience at all!




Probably like many parents of kids with autism, when Maggie was diagnosed I suddenly felt like I saw articles about the topic everywhere.  And actually this isn't really that far from being true. I probably see at least one article about autism on a daily basis.  I can usually tell from the title whether or not I should read it.  On very, very rare occasions I'll actually pass on the article to Paul or my parents, or share it on the blog facebook page.

Those are the ones that I actually think are worth reading.

Most of them... not so much.  But I don't mind seeing them.  Starting a discussion about autism is, in my mind, a good thing... although whether or not it stays a good thing really depends on where the conversation goes.



When I first began learning about Autism, I came across the Autism Speaks website and instantly recoiled.  The website made me feel queasy.  Seeing the billboards they've splashed all over our city and reading their name on each one even makes me draw back a little, because it instantly makes me think of what they promote and they promote a mindset that depicts a nightmare that destroys everything that it touches.

That's not what autism is to me at all.

Autism, in my life, is the little girl whose sleeping in the next room, whose face lights up when she sees me.  It's the laughter with which she fills our house.  It's her sparkling eyes that convey so much, even on days when she doesn't have that many words to share with us.  It's her sweet singing voice that we've been blessed to hear.

You see, I can't separate autism from my daughter.  It's an innate part of her personality and it's part of why she's so wonderful and unique and beautifully herself.  And that's why organizations that use language that paint autism as some horrible, horrible nightmare don't speak for me.  Because while we certainly have challenges and have shed our share of tears, there's plenty of lightness and hope and happiness there as well.  And saying that a diagnosis means your world is going to end and your marriage is going to be destroyed, just isn't accurate.



It may (or totally may not) surprise you to learn that I'm not all that interested in discovering a cause for autism.  I'm also not all that bothered when people say this or that or the other thing that I'm fairly certain has no effect on Mae at all, caused their child to have autism.  I can understand where the ideas and claims come from, whether or not they have any basis in science or even reality.

If there's one thing I've learned over these past months it's that Maggie has incredible reactions to absolutely normal things.  A bite of a Twizzler (did you know they have wheat in them?) might cause her to be in excruciating pain and almost completely lose the ability to speak for two weeks.  It can turn our world upside down in a single nibble.

That doesn't mean that I think that Twizzlers cause autism.  Maggie's sensitivity to gluten and dairy, however, seriously affect her ability to communicate and function, likely because they cause her such extreme pain (and let's face it, none of us function all that well when he feel like rolling up in a ball and clutching our stomachs).

I guess I'm probably not all that interested in reading articles about what causes autism because I do tend to believe that in our case it's genetic.  One article I did find interesting came out this week suggesting that autism begins in the second trimester or earlier.  I wouldn't be surprised if that was the case.

I'm also not at all interested in finding a cure because I'm not about to suggest curing my daughter from who she is.

Do I want to help her be the person she's meant to be and grow and share her amazing personality with the world around her if and when she feels like it?  Absolutely.  But I won't do that by destroying who she is.  My goal isn't for her to be just like everyone else.  In fact, that's not my goal for any of my children.  It's for her to be the person that she was created to be and live up to her potential.




If your child is diagnosed with autism you'll start seeing some really, really weird explanations for why he or she is the way that they are.  Remembering that everyone is just trying to help is important whenever you receive this type of information.  A sense of humor helps too.

Did you know that some people think that people with these particular characteristics are aliens?  (No. Not kidding.  Not even a little bit.).

Some of the suggestions will be less weird.  Some won't.  

You'll likely get a lot of advice.  Some of it will be good.  Some of it will be absurd.  Laughter and a sense of humor helps.



A few days ago I was laying on Mae's bed, watching her and Sadie and Patrick jump on Sadie's bed.  At first I kept telling them to be careful of their brother because it looked like they were going to smash into him every second.

But I really shouldn't have worried.

Maggie often appears to be totally absorbed in her own world.  She did at that moment.  I mean, she was laughing with her brother and sister, but she wasn't really looking at either of them.  She was just my little sensory seeking girl, enjoying jumping.

I never even saw we glance in Patrick's direction, which is definitely below her line of sight.  But after watching her for about five minutes I realized that she was acutely aware of his every move.  Patrick jumped and blundered around the bed with his poor toddler balance, giggling, and she carefully made sure she didn't bump into him. Twice when he almost smashed into her she stopped and threw her arms around him and hugged him and then went back to jumping.

It's easy to underestimate how much attention she's paying when she doesn't seem to be engaged, but more and more I realize that she takes in everything.  Even when she's staring off in the opposite direction.



Sometimes the weirdest thing for me about the last few months has nothing to do with Maggie and her actual autism and everything to do with the number of doctor's calling my house these days.  The example below is not an uncommon conversation:

Phone rings...
Me:  "Hello."
Receptionist:  "Hi.  May I speak to Cammie ?"
Me:  "This is she."
Receptionist:  "Hi Mrs. W.  I'm calling from Dr. S's office."
Me:  "Hi?"  (sounding confused because I have no idea who that doctor is)
Receptionist:  "Your daughter was referred by Dr. C and we've already pre-approved your insurance for your appointment with us.  I can schedule you for two weeks from today.  Does that work?  I'll send out a packet in the mail with the information you need to bring..."

Sometimes I know who the referring doctor is.  Sometimes I have no idea who referred us even though it's probably a doctor that I know, because right now, between my three children and the pregnancy, there are so many doctors that my brain is completely full of names and there just isn't any more room.

In an hour I'll be leaving the meet with a neuro-psychologist.  I only know he's a neuro-psychologist because I remembered his name after I got off the phone with his receptionist and I googled him.  Paul's coming with me because he has an overwhelming number of reviews online letting everyone know that he gets 1 star for bedside manner and isn't the most pleasant person to be in the room with, and Paul is way better at dealing with doctors like that than I am.

But yeah, tons of doctors and therapist and social workers calling each week whose names and offices I don't even recognize?  For me that's probably been the weirdest part of these last few months.  Which is to say that life with autism isn't all that weird.  It's just life like it was all along, with a lot more help thrown in to help Mae meet the challenges that she faces each day.



For more Quick Takes, visit Conversion Diary!

12 comments:

  1. Not being familiar with autism, I really don't know, then, how one speaks properly about the deficits a person with autism experiences. As I currently understand it, this condition has problems associated with it that have to do with the inability to function in society without lots of accommodation. Is that the right way to describe the condition and the problems it presents? Because then, a "cure", to me, would suggest something can be done to correct brain function to improve functionality in the outside world. It would change the child, but only in that they would be able to acquire a skill they cannot currently acquire.
    It also seems to me that Autism Speaks may be portraying what it is like for those who deal with children who are on the lower end of functionality on the spectrum. From what you say of her, Mae doesn't fit that description, and there is much hope for her. So of course AS's take on autism may seem dark and harsh. But I expect it is reality for many people. It just doesn't speak for everyone on the spectrum.
    Of course, I would hope all parents love their children and hope for them to have the best possible life and achieve their highest potential, even their children with serious impairments.
    Could you help us to understand the best way to talk about autism that respects the person but at the same time accurately describes the problem and hopes for improvement?
    God Bless. ~ Bonnie

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  2. I don't know. Mae's doing really well with therapy but she has also diagnosed as "severely autistic." And even when she was at that point of her diagnosis, she was still amazing. My goal in putting her in therapy is to encourage communication, both on her terms and in a way that the rest of the world can understand, basically in her language and ours. At the same time I can't imagine wanting to stamp out the part of her that is her which also happens to involve the way she thinks... which is apparently quite autistic (this might be rambling, and I'll try to get to the point!).

    A lot of autistic people, even non-verbal adults, are deeply, deeply hurt by the language that Autism Speaks uses. That's really where I started when I started learning about autism after Mae's diagnosis. I started reading facebook pages by autistic adults and reading blog posts by them, talking about their experiences (you'd be amazed by how many non-verbal autistic people, as well as verbal people on the spectrum are amazing writers). The way nearly all the people on the spectrum that I've encountered have expressed it, the problem often comes in the way that neurotypical people talk about people on the spectrum as if they're broken. They don't want to be fixed, they want to be respected... because so many of the hardships that they face come from a lack of understanding and acceptance, from the cruelty people lash out with towards those who are different.

    The thing is, you really wouldn't be able to change what neurotypical people see as the basis for the "problem" without completely destroying the way that they see and view the world. You can't just take out the "problem." Because what neurotypical people think is the problem is the way that they think.

    I'm not sure I'm expressing this well at all though. More and more I'm coming to realize that the people who give the best voice to autism awareness are those who are living it themselves everyday because they can articulate exactly why Autism Speaks is so very, very wrong.

    I'm trying to think of some of my favorite links that do help! And if you're interested they are definitely worth reading.

    This post right here is an awesome place to start: http://tomplastow.wordpress.com/2014/02/09/dear-autism-parents-we-dont-want-to-be-cured-2/

    This post is a must read too (and if you read the whole thing and read about the author's daughters encounter with the head of Autism Speaks you'll see at a very basic level how little that woman understands about people on the spectrum)http://adiaryofamom.wordpress.com/2013/11/12/no-more-a-letter-to-suzanne-wright/

    There's also ASAN (Autistic Self Advocacy Network): http://autisticadvocacy.org/

    And The Autcast (both his blog: http://thautcast.com/drupal5/ and facebook: https://www.facebook.com/thautcast ) is another place to start.

    Anyways, those are a starting place for anyone seeking to understand why I'm not hoping for a cure for autism and why I think Autism Speaks is completely headed in the wrong direction. They're headed down a path that causes more people to be terrified of the differences of people who are on the spectrum... and really, that's the last thing kind of boost in awareness that we need...

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  3. Thank you, Cam. I AM interested, and I will look at the links you referenced. I would like to understand what is happening to those diagnosed as autistic, and how they articulate their experience of the neurotypical world. I wonder how the world will change as so many more children are determined to be on the spectrum, and they begin to affect society as contributing members. Thank you for your long response. Unfortunately, I don't have someone who is on the spectrum nearby that I can observe and compare their behavior to what is written on blogs out there. But I look forward to learning so much more about this condition.
    God Bless. ~ Bonnie

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  4. So glad you wrote this. Your number 4 was the best. She came into this world wired a certain way and your task is to help he become the best Maggie she can be. And it really sounds like you are just giving her all the love and support she needs.

    And BTW, she is so so cute! Just beautiful!

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  5. I'm glad my response made some sense then, because I was really worrying it was going to be all over the place and wouldn't! When I first started looking for resources though, veteran moms that I knew with kids on the spectrum pointed me in that direction and it really does help things fall into place (at least it has for me!).

    I do wish I could take away the related health problems (like GI issues, seizures and all those things that often go hand in hand with it). And I wish I could make it a perfect world for her to grow up in... which is one of the things that interests me so much about spreading awareness and talking about our reality and experience with autism.

    And don't worry about every offending me with your questions or the language in a comment! I was actually reading a discussion about this earlier in the week and a group of parents were talking about how there's a huge difference between questions that might be posed in a way that some people would find offensive when the question is genuine, as opposed to when a person is just being hostile to people who are on the spectrum. I've seen both and there's such a huge difference! But those hard questions are the ones that others might be wondering about too and so asking them is a good thing (although I can't say that I will personally have the answers! Oh no, I think I might be rambling again!).

    Anyways, I know I could go on and on... but it's time for bed! Have a good night!

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  6. Cam, I thought the article in the Wall Street Journal this week was interesting. It noted that some companies are starting to focus on hiring autistic individuals, because the intense focus many exhibit is important in problem-solving tasks or particularly detailed tasks (like identifying minor errors in products -- think of the current GM recall problems -- or minor faults in computer programs).

    This Wednesday I am going to a play at Oakland University titled "Falling" by Deanna Jent. I'm told it's played around the country, and is about a family raising an autistic child. I'd like to see how that is being portrayed to the masses.

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  7. It is so clear the the experience of having a child on the spectrum is so individual and unique to each family. The only child I know personally who has been diagnosed is a 9 year old boy who is totally non-verbal, becomes extremely upset and lashes out with any change in routine, and seems to "connect" only with his grandfather. His parents also had to fight to get him into one of the few programs available locally. It is so sad how the number and quality of programs differs radically from place to place.

    Marie

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  8. Virtually everything you've said about autism rings true for folks in the bipolarity range/class of disorders as well! Everyone's experience of their condition is different, most advocacy groups don't have a clue what they're talking about, the disease IS your personality, the causes are varied and poorly understood, laymen don't know what they're talking about,and, most importantly, we lost track of our doctors in a hurry!

    If I had a nickle for every time I've been told by a person "you'll grow out of it" or "It's just a vitamin D deficiency" I could probably better afford my medication.

    Related to autism directly, the people who are saying that it's linked to vaccinations (a) have no concept of causality and (b) are advocating dangerous, dangerous behaviour.

    Bless you and your family, Cam.

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  9. I actually tend to side with autism speaks. And that opinion is coming from a mother who's daughter has regressive autism. I accept my daughter the way she is now but I also know that it's not fully who she is. A cure for autism is unlikely however I appreciate the amount of research and time AS is responsible for. Hopefully in the future we can figure out ways to minimize the behaviors and side effects that autism brings. My daughter is low functioning and non verbal, she will most likely never be independent and it is a fear that never escapes me. She is sweet and innocent and this is what our life is now. Would I change it or cure it if I could? In a heartbeat. Because the reality is we live in a neurotypical world. But every family has a different experience with autism and what might be right for one family isn't necessarily right for another.

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  10. Hi Hafsa,

    Thank you for sharing some of your experience here.

    I think my problem with Autism Speaks extends beyond their view of autism into the fact that only 4 cents of every dollar that they bring in actually goes to help autistic people get services. And none of their funding goes to technology that provides more effective alternative communication devices, which as I'm sure you know is what tends to help autistic individuals the most during their lifetime.

    Another major concern is the language that they use. It's really dehumanizing. I would never, ever want my child reading their site and believing that she's a burden that's destroying her family and the people around her, and that is literally what they're public service announcements have said.

    I do think there's so, so much more that should be done to help families and individuals with autism. I just can't agree with their model or how they want to fix it, which basically amounts to eugenics.

    I guess basically I see so much that I wish could be done, I just don't see AS heading in the right direction to do it and offer actual help to families or individuals, likely because they don't really interact or involve those individuals because their views on them...

    Prayers for you guys! Regressive autism would be so hard... in some ways it's a blessing that Mae never developed beyond about 16-17 months, because the realization that something was different came on very slowly over the course of a year... and I think it made it easier to deal with when the time came.

    And I can totally, totally understand with the regression wishing that you could take it away so that she was like she was before.

    I guess what I should really say is I wish I could ease the burden without making everyone neurotypical if that makes sense... I hope it does!

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  11. It does make sense and you enlightened me in my ignorance because I had no idea any of those behind the scenes information on Autism Speaks. It is definitely difficult to raise a child on the spectrum but I would never call her a burden, she has been our blessing in many ways. I will definitely do more digging into Autism Speaks, I did read awhile ago that they have zero autistic adults like not even one on their board which is a bit odd to me. My husband is interim executive officer for the CA guide dogs board and I believe he is one if a few employees not legally blind. It seems odd to not have autistic board members for an autistic organization no? So that should have opened my eyes. I hope that with the rise in children being diagnosed that there will be more resources and support groups in place for our children when they grow up.

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  12. I haven't known about it for very long either and I was really shocked too! They're such a well known name that I think that kind of makes parents instinctively trust them... so when I started reading autism blogs and finding out how upset people are about they're statements and the way they're run, I was shocked. The link up above for Diary of a Mom (actually here, let me post it again: http://adiaryofamom.wordpress.com/2013/11/12/no-more-a-letter-to-suzanne-wright/
    ) was one thing that really got me thinking, because the blogger supported AS for a long time before she finally changed course...

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