Back in 1993 when Jeremy was 2, he was not acquiring speech, and he began to become completely engaged in simple, repetitive sensory play. At the time we knew nothing about autism, and we feared the worst — that it was degenerative (it isn’t), that there was no hope (that’s wrong too), and that he was inevitably destined to end up in an institution (also wrong).

Our school district did the right thing and funded his placement in what turned out to be an excellent preschool placement for him. It advertised itself as ABA-based, but was willing to work with us on an agenda we set. We were much more concerned with helping along his cognitive development than with normalizing his behavior. So there were no goals of “look at me” or “quiet hands” or “good sitting”. Instead, we leveraged the sensory and pattern-seeking things that Jeremy enjoyed, to focus on helping him absorb, in his own way, the pre-academics and cognitive calisthenics that his nonautistic peers were getting by osmosis in typical preschool environments (which he wasn’t).

It didn’t make him less autistic. It did help support his acquisition of reasoning skills, preliteracy, and eventually expressive speech.

Behavior? The important thing was to get him to start reasoning about behavior, his and others’: antecedents, and consequences. Supporting his efforts to do so, and trusting him to do so, once he really understood the consequences of a situation, particularly dangerous consequences, was critical.

Children, whether nonautistic or autistic, live up — or down — to the expectations we have of them. Pathologizing sensory and pattern-seeking play is not a winning strategy in that regard. Nor is forcing social play on a child not yet ready for it simply because Penelope Leach or whomever says it should be developing by a given chronological age.

The right thing to do is always to leverage what the child has as far as strengths and interests — never to discard, or suppress, or “extinguish” anything that isn’t causing harm to self or others or violating boundaries.

This is true regardless of how “high-functioning” or “low-functioning” you’ve been told your child is (or might become).

When I was about ages 5-8, I would engage in some typical play in groups, like when some other kids would come over to our house, and we would play house or something, or if my sister’s were there. Mostly my “typical” play was quite atypical in manifestation, and I would spend the time spinning car wheels or something.

But you’re not saying that somehow, as a mother, you just knew your son was autistic. You knew something was up, and you did everything you could to find out what it was – and to act on it.

You’re saying – and I agree – that scientific knowledge, coupled with parental concern, led you to press forward with your concerns.

I guess I did the same thing relatively to my pediatrician… though I was not at all sure what we’d find. I just knew that there was SOMEthing to find, since there were so many ways in which Tom was not like his peers. Again, not intuition, but observation.

Back to the topic of this blog, I’m concerned that there will be a lot of parents overthinking their child’s individual idiosyncracies, and “intuiting” that every odd glance or unusual use of a plaything is a sign of an autism spectrum disorder. I’d never suggest, though, that a truly concerned parent should ignore red flags!

Lisa

In the first case, the intuitive conclusion springs from real, genuine, experiential knowledge of the child and is defensible as such. In the second case, the “intuition” springs from ignorance and often a complete lack of information, experience, or expertise against a backdrop of desperation or narcissism or “mom will save the day,” and it’s usually not defensible or supportable. I view the two kinds of “intuition” as very different.

That said, I had two pediatricians who told me my son was “fine” when I queried them about his obsessive spinning, his echolalia, and some other issues. Their rationale was that he looked at them in the eye, ergo he was “typical.” And I didn’t buy what they were saying, but my own knowledge–real, scientific knowledge, not intuition–told me that they likely were off the mark in using that as the sole criterion. Even so, we took a watch-and-wait attitude for some period following these opinions until a developmental pediatrician diagnosed him.

I do think that parents can see changes or issues in their children that others don’t – but not because of some special, undefined instinct or intuition. In my opinion, when parents (moms and dads alike)have a “gut” sense that something’s wrong, it’s because they’ve made observations, consciously or unconsciously, that concern them. Of course, parents have more of a vested interest in their child’s welfare than practitioners do, and so they are willing to go the extra mile to be sure that issues are dealt with (or at least investigated).

I certainly ran into an issue with our beloved pediatrician, who spent a minute or two with Tom when I raised concerns and said “he’s fine.” He did recommend a developmental pediatrician when I asked for a name, but overall he was very little help. But I can’t claim intuitive or instinctive knowledge of anything except our preschool director’s insistance that there were “red flags.”

I’m very uncomfortable with Jenny M.’s representation of mothers as having a sort of supernatural knowledge of their children’s needs. I think it’s this kind of thinking that leads moms to feel that they should “know” which treatments will work, which doctors and therapists are trustworthy, etc. And I think it’s scary when moms are led to feel that they can and should – simply because they are moms – “recover” their autistic children.

Lisa (autism.about.com)

I don’t happen to have a medical degree and yet during my son’s 209 day NICU stay, and pretty much since then too, I always *sensed* that there was something wrong with my son at least a week or more before the doctors would finally listen, investigate, and my son would head off for yet another life-saving surgery.

I also “knew” before the so-called specialists confirmed it that there was something “not right” with my son’s development. I may not have had the vocabulary to pinpoint it or the list of extra initials after my name to lend “credibility” (intentional quotes) to my observations but I was proven right each time. Had I *not* trusted my instincts my child might not be alive or might be significantly worse off.

Granted not *all* parents’ instincts are right *all* the time, but there does exist an incredible symbiosis between parent and child —especially mother and child. Many people have finely tuned instincts and intuition which should not be discounted.

The point at which the repetition and need for sameness (or an other ASD trait interrupts a person’s ability to function – to sleep, eat, play, interact with those around them, keep a job, a relationship, etc. at that point, the repetition or need for sameness might need to be addressed. Maybe it’s because of the degree to which some of these symptoms extremely limited my daughter’s ability to function, but it did not at all seem like a blurry line to draw.

MOST kids like sameness. MOST kids like repetition. The same good night rituals. The same favorite books and videos.

In fact, most adults like repetition and ritual too. Monday night football rituals. Girls night out rituals. The same turkey and cranberry recipes. The same beers. The same TV shows.

The question, then, is “when does preference for sameness and repetition become an issue?”

Seems to me that the answer is NOT self evident. It depends on the age of the person, the situation (an anxious adult is more likely to prefer rituals than a relaxed and confident adult), the household/culture in which they’re raised, and so forth.

Is a desire to hear the same good night song every night a sign of a problem? Probably not. Is a desire to watch the same video over and over again a sign of a problem? Could be… or not.

How about stacking blocks? Laying out train tracks? Playing with tops and yo yos? When is a preference pathological or problemmatic? Seems to me that it’s very tough indeed to draw the line!

Lisa (about.com guide to autism)