Monday, October 28, 2013

Your Child Isn't Autistic and Other Winning Statements

A few years back...
Before Mae's diagnosis, I knew just about nothing about autism.  Since the diagnosis I've been reading everything I can get my hands on, and sorting out the good from the bad (knowing Mae so well makes that fairly simple because at a basic level I know what she is and what she isn't and I can usually tell if a book is worth reading in a chapter or so based solely on the way they talk about autism).

But I also realize that what I have learned in a month and a half is still very little.  I've talked to our pediatrician and psychologist and therapists and social workers.  I've spent hours every week sitting in offices watching Mae be tested and asking questions.  I sneak out the book of the day and read whenever my children are quiet enough to steal a few moments away from the crazy loud playfulness that is my life.  And at night I try to find a few moments when everything I'm supposed to have done is complete to sit and read some more.

I've learned a lot.  Being part of this study should help me learn a lot more (since every time anyone hears that we're doing it they talk about what a great program it is and use words like "time commitment" and "intensive" that make me a tad nervous about how I'm going to cram it into our schedule).  But I will.  Because I would do anything to learn how to help her communicate and interact with the world around her.

What I didn't know before we began this journey, was how many autism experts there are in the world.

If you don't have a child with autism, or aren't on the spectrum yourself, you might not realize that half of the population of the US appears to be an expert on the subject.

Once you get a diagnosis the floodgates open.

"There's nothing wrong with her."  You'll hear.  "She's just being a kid."  There will be eye rolling and snorting.  "I think that autism is extremely over diagnosed."  "My kid probably had it.  But we never did anything and he's fine now."

And if you're like me your tongue might get a little sore from all the biting of it that you've been doing.  And then you'll start typing (because let's face it, that's what I do too!).

Yesterday it came to me that talking about having a child on the spectrum is a little bit like being Catholic.  When others find out, you might discover you have something wonderful in common, that they're Catholic too and that you share a deep love of Christ and his Church.  Or you might find out that the person has about a million preconceived notions about the Church and is only too happy to share them with you.  "Oh I know all about the Catholic Church.  You guys worship Mary and the saints and statues."


That sort of comment shows a real ignorance of the Church and of Catholicism.  And the sort of comments I've been hearing often reveal a total ignorance of autism.  Which brings me to the point of this post.

Before offering unsolicited advice to a parent of a child with autism, it's helpful to ask oneself what they actually know.  Where have you learned what you know?  Was it a five minute segment on the news?  Was it a half page article in a magazine?  Was it from hearing about so-and-so's-cousins-son who "was really just a brat" they were "making excuses for"?

If it's possible that the whole of your knowledge comes from a source like one of those listed above than you may want to consider not offering advice.  And more than that, you may want to work really, really hard to suppress that eye roll.

I appreciate most well meaning advice, even if it ends up being something that we don't use.  After all, I'm learning, and when I hear about something new I start researching.  I would love to hear how you're sister's cousin's uncle's daughter did really well on a gluten free diet.  It gives me hope.  And  I really, really appreciate all the supportive and loving comments we've received.

But if the first thing that comes to mind is saying that you think kids with autism are spoiled and that nothing's wrong with that kid that a few good hard swats to the butt wouldn't cure, than stop.  Because you're wrong.

To be continued in part 2 (since I apparently have a lot to say on this subject...)


  1. A friend of mine has a son who has Tourette's and is also on the autism spectrum. And my son has Down syndrome. She has expressed a bit of jealousy that my son has a "visible" disability. I guess when her son does things that are different it isn't immediately obvious what is going on, and I guess a lot people just think he is misbehaving. With my son (he is so young at 16 mos this hasn't really been an issue), I suppose when he is older and perhaps acting differently, his appearance will probably give clues as to why, and people will probably say less stupid comments to us. I thought this was an interesting take of hers on visible/invisible disabilities. :-) It has definitely taught me NOT to assume that misbehaving kids necessarily have bad parents. There could be something more going on.

  2. Cam, I think a lot of that comes from a misunderstanding. A lot of people hear autism and think of the child who doesn't speak at all, doesn't make eye contact, resists affectation. She. they see Mae she doesn't fit that description. I think that as a society we're only at the very beginning stages of learning about the spectrum. Food allergies (as I'm sure you've found) are the same way. People who have foods that make them gassy don't understand at all that their cross contaminated food might send you or your child into anaphalaxis. Sometimes people don't know, but are open to learning. Sometimes they don't know and don't care to learn. I think what you're doing and have done is pretty amazing.

  3. Three of my four kids are on the autism spectrum. They are fabulous, talented people...almost grown ups now. I'm glad you are getting the diagnosis earier rather than later. Welcome to the autism mom club. God's grace is sufficient.

  4. Our developmental pediatrician said that she's seen kids with traits on the spectrum who do grow out of them without any intervention. But there are also kids (probably mostly in the lower functioning set) who have 40 hours of ABA a week and barely progress. It's still not really understood well but kids in the upper end (like yours) do progress and improve greatly with less intervention. (I can also say this because I've taken a number of behavior science courses) Although the instructors were really big on ABA as the gold standard; I still really like Stanley Greenspan's works on floortime as well as Mike Merzenich's work on neuroplasticity. (ps I hope you don't mind me posting on all of this from my experiences; I know you have your own journey to make and only you and your family can find what's right for you guys)

  5. Patience- I don't mind at all and actually appreciate so much from hearing from parents with experience!

  6. Elicia- I had that exact same conversation with a friend of mine when we were visiting the other day when we were talking about the ups and downs of how people react to various disabilities!

  7. I can understand ignorance of a diagnosis with so much possible variance… the spectrum, at least to me, seems huge. What I can’t understand is the presumption that anyone would have that they know your childre better than you do!

  8. My cousin's 2.5 year old son was recently diagnosed with autism, and being around him has been eye opening about the challenges. I have four littles ranging from 5 to 4 months, so think of myself as not a novice at kid wrangling, but all of them together require about a quarter of the effort and supervision he does. He is a sweet boy, and very smart, but has no fear of danger, or motivation to modify his behavior based on negative experience or desire to please adults. All of my littles by two to three have been much more motivated to behave to make mommy and daddy happy or earn praise than by negative consequences (and for the oldest at this point her major motivator is is to please God), but my cousin's boy really doesn't seem motivated by earning praise or fitting into "socially normal behavior". The things I take for granted, like taking all the littles to the store and having them follow the cart like a line of ducks, or stand next to the car in the parking lot while I load them one at a time into car seats, or even missing a nap or a late meal without getting so upset he screams til he throws up - I have so much respect for moms of kids with "unseen" disabilities. I think physical issues would maybe be easier - you at least wouldn't have to worry so much about safety - never turning your back and sleeping with one eye open.

  9. As an almost-18-year-old Autistic girl, I can unfortunately say this continues, especially for people with high-functioning Autism. One thing that really helps me is having a strong sense of self (and I don't mean self-esteem in the wishy-washy, everything I do is right secular fashion). By knowing that I am both different from other people (instead of thinking I'm crazy or that my Autism isn't important) and that the general population doesn't get to decide either the impact Autism has on my life or how much I "belong in society" (because unfortunately, some people don't like the fact that I exist slightly differently than them), I get a pretty good basis for seeing myself and not overreacting to other people's comments. Obviously, this is a teenager's perspective rather than a parents, but for me it has limited sort of "identity crises" or too much frustration with ignorant people.

  10. Hi Claire,

    Thank you so much for commenting! I appreciate your point of view so much (and have been searching out everything I can find by people on the spectrum, since that was the #1 suggestion I got when I first began writing about this). I would love it if in 15 years Mae can make the statement that you just made about her identity!

  11. Honestly, I have been around lots of little kids and it seems to me kids with autism DO have peculiarities that are not typical of other kids, even "spoiled" ones. To me, it's not even a subtle difference. Autistic kids do not appear to be acting out of defiance or willfulness as much as a sort of single-mindedness that is oblivious to the executive guidance of the brain (or the parent!). I never studied the condition, and know very little about it, so please excuse me if I misstated what is going on, but when I interacted with a nephew who is on the spectrum, it was really obvious to me something was "different",even before he could walk, and then, even though I didn't see him often, when he was five or six. He is highly functional, and very, very smart and funny. I am not sure of his diagnosis, but he may even have Asperger's Syndrome. He's about seven now.
    Unfortunately, his dad and mom and brother and he moved across the country with a new job, so I haven't seen him for a while.
    Whatever the case, I know it makes it harder when people express doubts about the diagnosis, because all of us need support when we face a crises. But what can you do? You just have to roll with it.
    I do hope as time goes on more and more highly functional people with autism can help to illuminate what is going on in the minds of the little ones, to help parents and the rest of us learn good techniques for raising autistic kids.
    I don't know you, and came onto your blog just before Mae's diagnosis, so I don't know much about your life before that. But I do admire you so much, because you convey a quiet patience and calm in your writing, a sort of grace and trust in God. I know you must react with kindness to those who wonder about Mae's diagnoses, and I know God will give you all the aid you need. I will continue to pray for you and your family that you may face this challenge and have a most joyful, wonderful outcome. God bless. Bonnie

  12. Hi Bonnie! Thank you for your kind words (you've posted some really wonderful comments these last few weeks. I need to figure out how to set up my comments so I can reply directly to individual comments... but that's been on my to do list for ages...).

    I think you're right that the quirks I've noticed can be really obvious once you know what to look for. I had never been around any kids who were autistic, but once I started reading I realized how different so many of the signals were. Of course now I see them everywhere!

    Anyways, I just wanted to thank you for all of your kind words and insight since you've started reading! God bless!

  13. I can SO relate. My daughter was diagnosed with Type I Diabetes at 5 years old. My son has learning disabilities and sensory issues... we've heard more than once that he'll "grow out of it", or he's "just being a boy". UGHHH. I think the universal urge to offer uneducated advice is overwhelming to people. I've often threatened to slap the next person who tells me about cinnamon as a cure for diabetes... of course I really wouldn't, but it's SO frustrating to constantly have to educate people in a polite way. (For the record, cinnamon might be helpful for insulin resistance or treating Type II, but has no power to magically restart my daughter's dead pancreas. ;) )

    I hope you do glean some helpful tips along with all the uneducated comments you have to put up with.

  14. Thank you, Cammie. I continue to pray for you as you rely upon Christ with Paul to raise the kids God has given you both. Blessings. Becky


I love comments and I read every single comment that comes in (and I try to respond when the little ones aren't distracting me to the point that it's impossible!). Please show kindness to each other and our family in the comment box. After all, we're all real people on the other side of the screen!