Undiagnosed Autism

Miscellaneous and Personal Stuff I Must Share
1

I’m not sure this is the correct forum except that I’m more interested in people’s opinions than their diagnoses. However, I had a curious experience and I’d like to know if this is uncommon.

Several of us Plutonians (myself, Mrs. P. and the two eldest Plutinos) traveled to Port Angeles, WA, to see a concert (Leo Kottke). Since it was a long drive we called Mrs. Pluto’s aunt and uncle who live in nearby Sequim (pronounced Skwim) to see if we could bed down on their floor for the night. We were welcomed with open arms. Also staying with them was Mrs. P.'s aunt’s daughter, with her husband and son, who, because of family blending, is not closely related to Mrs. P. or me. Step-cousin-in-law, or something like that.

We had met the daughter maybe once before. She lives in Alaska and was down visiting her mother. All of us had dinner together before the concert. It was here I first noticed something a little odd. Her son, about six, seemed pampered, even spoiled. That’s not unusual – an only child, parents who are a little older, with a mother (as we discovered) who’s very, um, protective. They seemed unwilling to disturb him while he was watching “his video” (again, this was okay – when you get the kids quieted down, don’t rile them up) and then he went to play a new video game on the computer in the other room. He needed a little help to get started and there were several volunteers willing to help but it turns out only one of us could help him at a time and then only for a short time before they were “dismissed”. Again, curious, but maybe they just have weird family dynamics.

At dinner he sat between his parents and they fed him his meal, one bite at a time, sometimes with their fingers. When he was finished he was excused and then he ran around the table several times, reciting, word for word, the dialog from the new video game he had just played. His mother commented on how clever he was.

After dinner for some reason the subject of hyperactivity came up and the daughter got started on how ADD and ADHD are frequently misdiagnosed. This is a bit of a sore point at Plutonia since a couple of the Plutinos are, in fact, ADHD and we don’t believe they are misdiagnosed. But it’s a controversial subject, people are welcome to their opinions and we didn’t want to make a fuss. But she went on and on about it, to the point where we had to either just shut up (and lend silent credence to her theories) or really start an argument. We shut up.

The next day (it was a great concert, BTW) we got up and the early risers went for a walk while the slugabeds (that would be me) wandered into the kitchen and had some orange juice. We had to get back home so we didn’t stay long but there was more weirdness. The parents complained that they had slept on the floor because the son wouldn’t let them sleep in the bed! And whatever he wanted to do was accommodated. So either this kid is the most spoiled kid in history or …

… or he has real problems. None of us has more than a layman’s knowledge of autism but it seemed like we saw several classic signs. The recitation of the video game. He would do things repeatedly. He had poor social skills (well, he was only six, but even little kids say hi). He became upset if he was interrupted at what he was doing. Mrs. P. noticed that when he went to get a hug from his grandma he didn’t hug her, but only inclined his head so she could hug his head.

If this was my kid I think I’d talk to somebody about it. I can see that you might, because they came up gradually, work around peculiar behaviors your kid has and not think much of them. But this kid was, IMHO, off the charts. The parents seemed to have a very careful routine that they used with him and anything that might disturb the routine was avoided. He required constant attention, not because he was mischeivous, but because he was unpredictable when he was discommoded.

So here’s the question, if one is needed. Is this common? Are parents with (again IMO) “disturbed” children frequently unaware? We guessed, partly from her adamant rejection of hyperactivity and partly from other things she and her husband had said, that the boy’s pre-school had probably “suggested” having him tested (presumably for ADHD) but you certainly got this “They just don’t understand him” vibe from mom. The husband, BTW, seemed like a nice guy but he was definitely NOT in charge. I suppose the boy’s behavior was within expectations for being raised by a domineering, overprotective mother, which would be bad enough, but to be autistic and undiagnosed seems like a real disaster.

Anyone know anything? Bueller? Anyone? Anyone?

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Perhaps they do have a diagnosis of some sort, are working around the child’s problems while he’s being treated, and simply consider it to be a private matter that they don’t talk about to the family?

Sometimes I do think the modern social expectation of “tell us all about it” makes us forget that there are some things that people not only don’t wish to talk about, with family or not, but have no obligation to talk about, with family or not.

jayjay (Not jumping on you, pluto. Just an observation…)

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Since I’m the father of two autistic kids, this sounds very much like autism to me and is remarkably similar to some of the things they do. For instance, the video thing; if Sean got interrupted while playing video game, he would have to stop, go back and start the entire thing again from the beginning. He would also be the one to decide when he needed help and how much he needed. If you tried to give him too much help, or help when it wasn’t requested, he would throw a tantrum. Liam is the same way at feeding time. We have to give his food to him one piece at a time; if you try to give him a whole plate at once, it’s considered a toy, or it gets swiped off the table. Sean also has a habit of reciting all the details of the Rhode Island Potato Heads in order at least once or twice a day.

It sounds very much like the parent are either in denial or are just completely unaware that there is a problem. Or it’s possible that they see the problem and are just unwilling to deal with what you need to go through to make the necessary changes. It took us about 5 years worth of constant in-home training and therapy to get to the point where we know how to deal with the way their minds work and how to manage them to get through the day. I won’t tell you that it isn’t extremely difficult, but it can be done. But the parents have to be willing to do it, and in this case it doesn’t sound like they are. The sad thing is that if they don’t, they’re probably going to be stuck coddling to this kid for the rest of their lives.

I don’t know where they live, but if it’s anywhere in the Southern New England area, I can probably get them in contact with someone who can help. Or you can try The Autism Society of America which may have contacts to someone in your local area.

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I’m the parent of one kid with a high functioning autism dx and as of this week the parent of a kid whose school is putting intense pressure on me to get a freaking autism dx so we can get some freaking services which he desperately needs . I’m a touch cranky about the diagnosis of autism in young kids so bear with me OK? Neither of my kids are classically autie but they are both peculiar enough to need some support in a group setting. We get by at home but our homelife probably is unique.

jayjay’s got a good point. Another thing to consider is that possibly the kid gets by at home but really freaks out in a strange setting. When my older kid was younger, we certainly had to cater to him in strange ways to head off megatantrums which he could not control when we were at other people’s houses.

Certainly what you describe sounds on the spectrum and you also seem to be describing parents who are in denial. Denial is a very comfortable place at times in my experience and can be part of the process of acceptance. The mother might have rejected ADHD BTW because it does get old having it suggested by laypeople. I know I get sick of people suggesting my kid has it when it has been definitively ruled out by professionals. And IMO it is overdx’ed <G> which doesn’t invalidate the real cases.

Early intervention is very important with autism. The earlier it is begun, the more effective it is. OTOH if he has language (not just echolalia) he’s unlikely to be very severe. What you describe sounds to me like a kid with autism issues in a strange environment with the parents helping him cope.

I’m rambling here… just trying to explain what it can be like from the other side of the fence…

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Thanks all. Just a couple of comments on your comments.

jayjay – Your suggestion that it might be private is certainly valid but I don’t think that’s the case in this instance. They’re not particularly private people (none of Mrs. P.'s side of the family are. Not that there’s anything wrong with that!) and their actions were more consistent, IMO, with denial than discretion.

Euty – I appreciate your sharing. The good news is I think they are the sort of people who would do what is necessary to help their son if they were convinced he really had a problem. The bad news is that they don’t seem very open to hearing that there is a problem. My guess is that something will occur at some point to convince them. I’m hoping this happens sooner, rather than later. See the next note.

Primaflora – Again, thanks for sharing. I realize the child was in a strange setting and we were strangers to him. I don’t doubt this aggravated his problems. From what I saw – with my admittedly inexpert eyes – this child could function well with a little help. I think mom and dad are probably able to provide that help when he’s at home and in his comfort zone. They were probably struggling too with all the differences. I think what I’m hoping is that they get some informed professional help to guide them. I’m afraid that without that they will limit themselves and, more importantly, their child unnecessarily.

At this point I’m in a dilemma about what to do. For my wife or me to suggest to them their child is autistic wouldn’t be helpful, I think. Although I wonder if we had been smarter sooner we couldn’t have asked in relative innocence. But we just don’t know them well enough and we could simply be wrong. Mrs. P. could probably talk frankly with her aunt (the child’s grandmother) and see if maybe it has been considered before, or at least to maybe suggest the idea.

I actually agree with you that ADHD is overdiagnosed. “There’s something wrong so it must be ADHD.” But when it’s real it’s real. And I’m sure this kid wasn’t ADD/ADHD, so she has a right to be a little angry at the suggestion. But it seemed that she had made the same mistake in reverse – “He’s not ADHD so there’s nothing wrong with him.”

Finally, I know a family, not well, who have a little girl who is mildly autistic. They struggled for some time before they were able to get a proper diagnosis. It was scary for them but once they realized what the problem was they were able to help her. Like this case they were intelligent, informed adults and for a long time they attributed the problems to temperament and/or poor parenting skills. For some reason we resist the diagnosis in the face of the evidence. Maybe we could all stand a little education.

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Pluto, there is a list of standardized questions posed to parents to ascertain the behaviorial history of a child suspected of being autistic. I wonder if it would help your step-cousin-in-law to review that list. If she sees a familiar child, it might start the family moving toward diagnosis. Maybe the autism society has the criteria posted on its website. If not, I can dig out the diagnostic info we used regarding my son.

Thanks for caring for this child and his family.

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Not jumping on you either, jayjay, but they sure didn’t seem to mind poking at the pluto family’s sore spots, and insisting on talking about stuff that they didn’t wish to talk about. They may not have realized that they were on sensitive territory, but it sounds like it wouldn’t be out of line to talk as freely about autism as they do about ADD/ADHD.

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Is this little boy in Kindergarten? Has he gone to preschool? If his parents send him to any school ( please do not tell me they plan to homeschool) whether private or public, his situation should be picked up immediately by teachers.

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Hi Pluto.

My sister is a psychology professor within the school of Education at the University of West Florida. Her specialty is dealing with behavior issues and education of autistic children. I ran the OP by her and this is what she emailed back…

"The best resource is the Internet to get started. They should look up “positive behavioral supports” on the Internet and then look for local chapters.

CARD is another resource, (Center for Autism and Related Disabilities). Many local chapters will provide free services.

The #1 place to get services for their child SHOULD be their school. Services are mandated by federal law PL94-142 and revised in the IDEA to provide a free and appropriate education to all children, this includes services needed to provide an appropriate education in the least restrictive environment.

Have them look up the IDEA97 on the Internet for legal recourse for parents to get services. The Council for Exceptional Children will have easy to read legal material.

The sooner they do this, the better. If the child in 6 years old and not diagnosed, it may be something other than Autism, maybe Aspergers Syndrome."

I hope this helps. I know the support system in Sequim is definitely skewed (or would that be sequewed) towards the retired folks (our parents live there) but there should be help in Port Angeles.

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Hmmm – I posted another reply to this but it seems to have gotten lost. I suppose it will turn up to expose my “summary” as a pack of lies. That said, I will summarize my previous post: The family actually lives in Anchorage, Alaska. They were just visiting in Sequim. The boy is in a pre-school or kindergarten, and the school seems to have been asking questions about his behavior (my inference), but the questions have been deflected by the parents.

While I appreciate the resources y’all have directed me to (and they have been helpful to me, personally), the problem remains that the parents don’t want any help, not that they can’t get help. We’re trying to figure out what we, as outsiders, can do to get them to see that they need help. Our current plan is still to have Mrs. Pluto discuss the matter with her aunt (the boy’s grandmother). Unfortunately, she (the aunt) just left on an extended vacation and will be out of touch for a couple of weeks. But we’ll follow up and I’ll let you know if anything comes of it.

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The conclusion in the OP, that the boy is either extremely spoiled or has serious problems, strikes me as humerous, in a weird way. I have Asperger’s, which is a mild form of autism. I was diagnosed at the age of 18. As a child, my behavior was unusual enough to be noted but not severe enough to get evaluated, so everyone (teachers, relatives, neighbors, etc.) pretty much thought my parents were spoiling me, or at least making a hella lot of parenting mistakes. Oh, and people also suspected abuse.

Because many people do make those assumptions, parents do tend to get defensive. Also, the parents may be misinformed about autism. My mother, a first grade teacher, had a really hard time convincing the parents of one of her students to have her evaluated for autism, because the student has language. However, the girl clearly has many autistic traits, and could easily be Asperger’s or high-functioning autism. Also, it doesn’t help that many people have assumed that she’s just retarded. That the mother commented on his cleverness might suggest that people have challenged the boy’s intelligence.

Anyway, I seriously doubt that the parents are clueless. They just want what’s best for their child. My recommendation is that whoever suggests that the boy be evaluated first and foremost has the parent’s trust. If the parents feel that you (or the grandmother, or a teacher, or whoever) are on their side, and only want to help them in getting what’s best for their child, rather than accusing them of not knowing what’s best for their child, they’re much more likely to go along with seeking a proper evaluation and diagnosis.