Monday, October 28, 2013

Your Child isn't Autistic: Part 2

This is Part 2.  Part on can be found here.

The other reaction I've found is from people who feel like they really know Mae and just cannot believe that she is autistic.  It might be from someone who knew Mae as a baby or who have heard about her antics from my facebook status updates.

And the knee jerk response seems to be that obviously she can't be autistic.  They've heard what she can do.  She's obviously smart.

The thing is, being smart and on the spectrum certainly aren't mutually exclusive.  People on the spectrum come with a wide variety of IQs.

Yes, I know that Mae is very, very intelligent.  She demonstrates it daily in her ability to come up with new and creative ways to get into trouble.  I hear it over and over again at her evaluations.  But that doesn't mean that she isn't autistic.  Being autistic doesn't mean a person is dumb, anymore than being neurotypical means that a person is smart.

The other possibility is that the parent in question might not share every single little challenge that they've faced with friends and family.  They might not feel like telling the world at large that they had to clean smeared feces off of every surface in their dining room after going into the kitchen to make lunch and finding the mess unfolding in the baby proofed room five minutes later.  They might not talk about trying hard to convince themselves that it was "just a phase" while simultaneously trying not to get sick during the extensive cleanup that followed (or in 27 other scenarios, when they're child somehow took advantage of being alone for thirty seconds while their mother went to the rest room). And yes, that particular challenge appears to be behind us now.  

I tend to try to write about our cuter challenges.  I write about the challenges that make me laugh.  The ones that cause me to shake my head in amazement about the little firecracker that we've got on my hands.  I don't write about our toughest days, since I'm using all my energy getting through them (like yesterday when I had a migraine and someone kept trying to sit on my head when I tried to lay down and buy their silence with a Diego movie... which didn't work.).

And more and more I feel for those parents who's children are at other places in the spectrum... because the last thing anyone wants to hear when they're struggling to help their child is that their struggles are just in their imagination.

We know that something is really wrong (even if we've spent months or years denying it), we live with the challenges day in and day out.  To be honest realizing that something was happening that wasn't just in my head was a huge moment for me (and I imagine for many others walking in these same shoes).

So here's my advice to those who have a friend who has a child on the spectrum, or with any challenge.  Try not to assume that you know every facet of the problem.  Try not to assume that you're an expert in the area unless you really are.  For some kids it is very obvious (Mae falls on the more obvious side right now).  For others it's far less so.

And whatever you do, please don't tell them a) that you don't believe in autism or aspergers b) that you don't believe anything is wrong with they're child that a few good spanks wouldn't cure or c) that autism or any of the other parts of the spectrums "aren't real."  You also might want to hold off on telling them that you think the vast majority of kids who receive the diagnosis aren't really autistic at all.  

And for anyone who's still reading, and who's wondering what they should say if any of the above was your go to response, a nice place to start instead might be by asking them how they're doing.  If they've just received a diagnosis their lives likely feel chaotic.  They might not have a blog where they vent their every thought.

And then actually listen to what they say.  You might learn something that you didn't know before and even if you don't you may have lightened their load a tiny bit, rather than having added to it by telling them that the challenges they're facing are all in their head.


  1. I've found both of these posts quite interesting, and they caused me to think a bit.

    I wonder if some of the comments about autistic kids being badly-behaved and "just needing a swat or two" come from another perspective, though. Let me offer it. ;)

    When I was in high school, I worked as a mother's helper for a woman who had an adopted autistic son. The boy had a number of issues not related to autism: birth mother using drugs during the pregnancy, mental retardation, epilepsy, and so on. However, he'd been diagnosed on the spectrum, and I have no reason to believe he wasn't.

    This kid has (I still have contact with the parents) the mental ability of, depending on the area, about a 3-4 year old. He's a teenager. Of course, one can't treat him as a seventeen-year-old, with all the behavioral expectations of someone that age; that's just ridiculous! At the same time, as you know from having kids in that age range, a 3 or 4 year old is capable of basic obedience and of learning some rules.

    His parents simply do not discipline him at all. I don't expect him not to have trouble with loud, crowded areas, or not to be overwhelmed with certain kinds of physical stimulation (the sensation of wind on his skin drives him crazy). I *do* expect him not to deliberately cause pain to other beings, to not deliberately destroy objects, to not hit people or damage things as his first response to being thwarted in anything, and to be minimally helpful around the house. I expect these things because when he's in my house (my house, my rules and all that) he fulfills every one of them, so I know he's capable of reaching these expectations. When he's at his parents' house or out in public with them, he doesn't because they don't require him not to, and simply make excuses when he does. He's killed a number of animals because his parents refuse to see that he enjoys causing pain to others--not because he's a sociopath, but both because he doesn't understand certain emotions or feelings (he has an insanely high pain tolerance) and is fascinated by them and also, in the case of deliberately hurting his parents, because he has learned that doing so gets him his way. He's not at all stupid.

    And, not terribly surprisingly, he's much happier at my house than anywhere else. He is very gratified when he helps with something and is praised for it. He will sit and listen to renaissance polyphony, of all things, for an hour at a time, and this a kid who's usually pretty hyper! As soon as he walks into my house, he's visibly more relaxed, probably because he knows that there are rules in place here that *will* be enforced, and he understands his boundaries. I have yet to meet a kid, autistic or otherwise, who doesn't appreciate clearly defined rules rather than some ephemeral requirements that shift daily.

    Obviously, this doesn't apply to Maggie; I can tell from your blog that you wouldn't allow her to do things that cause hurt to others, for example, even if she has a very high pain tolerance. Again, an example: if she deliberately hit Patrick with something to hurt him, you'd respond appropriately rather than ignoring the behavior. I do wonder, though, how many other parents of autistic children are so overwhelmed by all the needs and requirements of those kids that they, like the parents I described above, let them get away with much more than they should.

    Of course, there will always be people out there who have no experience or knowledge in your field but still Know Better Than You because their sister's kid's half-cousin was really "just a brat." ;) Ignore them, and keep doing what you're doing. It sounds like you're doing a great job!

  2. That would be hard to watch (especially since I'd think limits would make him feel safer like you described). Yeah, we definitely have limits and rules. Maggie's made me better about letting some things go (like having to have a fitted sheet on her bed) but she already understands that she can't hit or hurt others. It would be way, way harder if she didn't!

  3. It's not your imagination and it will get better. The biggest issue I find with an older teen is trying to find her actual age. (she's 18 but developmentally she's probably more like 12-13) and intellectually she's adult. So on the pluses; she has progressed (obviously she wasn't 12 at age 12 but she is now) and also enjoying the 12 year old her and watching her hit the milestones of development. (she did pass all her midterms too! Yay!) So I get to have a kid a bit longer than other people and I can enjoy this but the frustrating thing is when others outside take her at face value for being 18 and then don't get that she's still a babe in the woods (not even close to dating; only mild interest in boys)

  4. Just ((((((hugs))))))). This is not an area I have experience with, so I have nothing to offer but love.

  5. Thank you so much for writing these posts!! I used to run a parish catechesis program for little ones with various special needs (among them, autism) and saw kiddos on a wide range of the spectrum, and everything you're describing is spot-on. Autism is a very real thing, and it looks very different from child to child. I am so sorry that you've encountered some people who have questioned that!!! It sounds like you're doing a great job with Maggie. She is so blessed to have a mother so dedicated to helping her!!!

  6. One of my children was diagnosed with a mental illness as a very young child. Except some friends, who have worked with people with mental illness, everyone else, including close family, would make a point to tell me that all my child needed was regular spanking. After a while I adopted the strategy of telling them "That's a very interesting theory. I'm sure my child's psychiatrist would love to hear it. Do you want her number?" That made them realize I was not the one who had diagnosed the illness, but a professional that knows much more than them. It also made me smile when their faces changed with realization and/or shame.
    Good luck.

  7. Somehow I found your blog through a link on another about the post with the meanies in the van yelling at you about your daughter on the leash. I've been a follower ever since. THANK YOU for educating and sharing your families journey. This article is a little piece I'll file away in the brain. Someday I'll need it and hopefully I'll be helpful in asking someone what they've learned and how they are doing. Builing someone up--not tearing them down by speaking about stuff I don't have any real life knowledge of.
    Des Moines, IA

  8. Lucia: :D I love that line! In fact, I have every intention of using it, modified to indicate the correct doctor/caregiver for the situation, in the future when someone tells me that I'm eating the wrong thing, exercising incorrectly, etc. Ditto with my kids.

    But then, it's generally unwise to get my Irish up in the first place... ;)

    Cam: Oh, yeah, no arguments there! They really do make it harder for themselves in the long run by not setting those limits. Sure, it took a few times of my sending him to time out or taking away a favorite toy to have him learn that "when Katherine says 'no' it means 'no'", but as I said, he's not stupid. He caught on pretty quickly. Ergo, when he's at my house, I have no problems at all with him, while anywhere else he's something of a nightmare.

  9. I grew up undiagnosed and as an adult choose to avoid anything official, but my entire life I heard over and over that my sensitivities and challenges were imaginary and that if I worked hard enough they would go away, and truthfully those were very hurtful things to say to a person who was working heroically to function up to her IQ and giftednesses while juggling various aspergers traits.

    If I could have one thing different in how I was raised it would be to have had someone sympathetic to my challenges who helped me to balance family social time with a quiet self nurturing. I'd like to get rid of the feelings of guilt anytime I refuse to abuse myself by sacrificing my need for quiet in order to do more than is good for me.

    You are doing excellent things for your daughter, and your other children will grow up with even more sensitivity to others because of how you handle her. God bless you.


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