New and on the fence about my 6 year old

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I only know that he is not 'typical'. I am not sure if he is on the spectrum.

He was evaluated at 3 by CPSE. I had him evaluated because he was having violent (head smashing on the ground) tantrums all the time. He was not speaking much. He seemed really immature compared to his peers. They said he had social/ emotional delays and low muscle tone. They said his speech was fine. He was placed in a special ed preschool in an integrated class.

He was having trouble connecting to his peers in school and cried all the time. This made kids shun him. He didn't seem to be able to hold a conversation with kids his age, and this really frustrated him. However, the school evaluated him for speech and said there was no problem. He would start coping better at school until there was a vacation. Coming back from the vacation, he would regress to crying all day again.

At his 'turning 5 meeting' , he was declassified and placed in a gen ed setting for kindergarten. He spent months crying most of the day. He could not figure out how to socialize like the other kids. He would interrupt kids and talk about something they could not relate to at all and didn't pick up on the 'cues' that they weren't interested. He would get really offended if kids didn't play exactly what he wanted to play. He doesn't seem to understand the 'give and take' of socializing. Kids called him 'weird' and most kids avoided him. His kindergarten teacher asked that we have his speech evaluated. I explained that it had been evaluated twice before, but he didn't qualify. However, we did it again. This time, they said (different evaluators) that his vocabulary was really advanced, but he had a pragmatic speech delay. The social worker and his counselor at school think he has some 'red flags' for being mildly on the spectrum. These 'red flags' included the pragmatic speech issues, wringing his hands and twisting his fingers incessantly and his social issues. And, his meltdowns.

I wouldn't say he is fixated on any particular interest. He makes great eye contact and is affectionate. He gets and makes jokes.

I haven't bothered to explore further, because when I read on the internet about ASD, he doesn't seem to fit the model. However, I did call to make an appointment in an autism center in my area. We were at the playground yesterday and I could barely watch his social interactions. It was breaking my heart. He just doesn't know how to approach kids in a way that makes them feel comfortable. He doesn't pick up on their 'cues'. He doesn't know how to have a two way conversation. I know something is up, but not sure what it is. I am worried if I can't figure out how to help him, he will get really depressed. Kids don't know how to react to him and were teasing him yesterday. He gets teased a lot.

We also are having a really hard time with the non stop tantrums. Now that school is out, his routine is different. He just doesn't handle transitions well.

Feeling overwhelmed and welcome any feedback.

Thanks,

Fitzi

Carry on researching. It'll make the times ahead easier to understand. There is a wealth of stuff here at WP.

Welcome.

torque

Thank you, Torque.

I'll keep on reading.

-Fitzi

I have a very affectionate child who makes great eye contact, has no special interest, and is definitely on autistic spectrum.

Outside of the early speech delay (my son had none) and related early intervention, your description could practically be my son.

Here is what I know: working with my son on the assumption he is autistic/aspergers, and having teachers work with him on that basis, has changed everything for us. We do not actually have a medical diagnosis, just a school use one, but it has been enough to give me what I needed to know. My son responds to the protocols developed for autistics. He thinks more like the adults on this board than he does the average person. Despite being drawn at an early age to sensory intense experiences, he has many sensory issues and his brain easily scrambles. He is also smart, self-aware, and creative.

Labels are a key. Even when the key isn't a perfect fit, sometimes it will open the right door. I suggest you explore the information on aspergers and try applying some of the parenting ideas we talk about here. If it helps, you stay on the road. If it doesn't, you keep looking.

I don't know what you've been reading, but everything you describe here is pretty classic for a kid on the spectrum. In particular, he has poor social skills and a need for a consistent routine, which are both listed as diagnostic criteria for autism spectrum conditions. The speech delays, hypotonia and tantrums are common as well (although they can be caused by other conditions).

I would definitely get an autism eval. He sounds a lot like my son.

Thanks for all of your replies.

Ettina, mostly I've just been searching online. I seem to end up at the same diagnostic criteria lists, and he does have some of the symptoms, but also does not have a lot of them. I did read through a couple of books, and yes, if it's just based on his social interactions, need for routine and sensory overloads, he certainly fits.

I did take him to a neurologist who met with him for about 5 minutes and said he was not on the spectrum. He said he was just really immature and will grow out of it. However, I think this doc does not like to label. He also just didn't spend enough time with my child. I cannot afford a neuro psychologist, which I think might be a better person to see. I did call a hospital in my area that does autism spectrum evaluations and takes my insurance. So, we'll see what happens.

Actually, many people in our lives keep just saying that he'll grow out of it (besides the counselor and social worker). I am the one who suspects it's not something he'll grow out of. But, then I second guess myself. He does really well when he's been in a routine for awhile, but takes a really long time to adapt to change. He was reclassified as special ed this year because of his poor coping skills.

I would welcome a label at this point. Getting a label would open up therapies that he wouldn't normally qualify for. It would also (as DW_a_mom said) probably help the adults in his life approach his issues in a more compassionate way. I am so tired of people offering me parenting advice and suggesting that I am too lenient or not structured or not different somehow. People who know nothing about the situation. At his old preschool (which was a special ed preschool) they told me that they thought he was really smart and that it didn't make sense that someone who was so smart would be so behind socially and emotionally. They then fished for awhile to see what I was doing wrong in my parenting.

I also have an 8 year old who was labeled as having Sensory Processing Disorder. I had been wondering if it was that, but I suspect there is more going on with my 6 year old.

I'm glad I joined here. This is why I joined. The stuff I was finding online wasn't answering my questions.

Thanks all.

-Fitzi

Hi. He sounds on the spectrum to me. I also had doctors who didn't want to label. For years we had very very good medical insurance, and the psychiatrists then said they wouldn't label my son. Then in the last year we lost our health insurance and our psychiatrist said a label is now important so that my son qualifies for services thru a program for people on the spectrum. So there might be things like that going on with the doctor you saw making him say there is no point in labeling. I just assumed mine meant there is no point in labeling, but now I think they actually meant "you are well equipped to obtain services for him no matter what we want to call it." And now that he can only get services if he actually has autism, they suddenly gave him that label.

Other than that, I guess the label is mainly a way to consolidate what's happening into a sentence of reasonable length. I train horses, and people are always saying "don't anthropomorphize", which is to say, don't give a label to a horse's behavior such as stubborn, angry, inattentive, high achieving, whatever. But if we don't use a label, we are left instead with listing a bunch of symptoms/behaviors, and that can make conversation very cumbersome. I'm quite sure that even if people reading this don't know anything about horses, hearing a horse is stubborn is going to give them a very accurate idea of what how a horse is behaving and save me the trouble of having to talk and talk and talk to explain it.

Just like any kid who's not totally typical, label or not, he'll need you to figure out as best as you can how to help him, and the same goes for his teachers and other adults in his life. If you wind up needing special classes or therapy that he only qualifies for if he's diagnosed, then you might pursue it with more vigor. Otherwise, he still needs what he needs, no matter what it's called.

As for if he'll grow out of it, maybe he will, and I don't know that the expectation that he will should change much about how you interact and parent him now. At some point if he doesn't grow out of it, then you'll know. But in either case, he needs support and training and help. That's how it went for my son - it was all considered stuff he'd mature out of. But he's almost 12 and he certainly has not matured out of most of it, and more parts of it have been added (and some stuff did get better.) So, now we know. But in the meantime he still got occupational therapy, sensory help, speech, counseling, special ed, and he attended a few sessions of "social class" with an autism spectrum group and that really helped even though at the time we had no clue whatsoever that he had autism; we just knew he had social issues. So if you can get an idea what he needs and try to get it for him, it probably doesn't matter what it's called.

It's not easy! Revel in his special qualities. Try to be a good role model. Try to expose him to good role models. Get with an occupational therapist - that helped so so so much when my son was 3 to 6 years old. I'd say try to shield him from awkward and disappointing social interactions as much as possible for now. I started homeschooling my son as soon as the kids got the idea he was weird (fourth grade.) Not everybody has that option and I am very very lucky. But if the park is really hard, well, he doesn't have to go to the park. What worked very well for my kid at that age was things like art class. He could do more parallel play/interaction since they all work on their project independently and there isn't an expectation of cooperation and give and take interactions. There is an adult right there to watch for kids being mean. And that social class was great - all kids in the room were receiving training so it wasn't like he was singled out as the only odd one in the group. He also gets a lot of enjoyment out of being around younger kids, and the younger kids don't notice the things that are odd about him. Another thing he loves is serving at the homeless shelter. It's hard to find one that will let young kids serve - the one we've been to lets them start at age 8. But that is a quick moment of interaction with each person during which he has sort of a rote memorized thing to say and there isn't time for it to get awkward AND he loves helping people. Try to find things like that.

Take care!

Thanks 0223, great advice.

-Fitzi

Many, many parents here have spent years looking for answers, being told their child will "grow out of it" or is "immature" (really, what do they think "developmental delay" means?) Lots of us wound up with four or five diagnoses before we found the one that fits. This is not to say an autism spectrum disorder fits every child, but that what DW describes is really the way to figure out which of the diagnoses or possibilities you're offered is the right one: if the accommodations, treatments and therapies you're offered work, it doesn't really matter what you call it.

In terms of being diagnosed, we were one of those families who had a child who "didn't fit." In particular, my son was listed on the school's psych report (which did give him a diagnosis of AS, but no therapies or accommodations because we didn't know better) as being "popular" - something I thought was impossible for a child with a social communication deficit (that diagnosis was in 1st grade - by middle school, he's now no longer invited to parties, struggling to find a place to sit at lunch, etc. I do wonder if we'd received speech therapy when the school initially diagnosed him, if things would be different.)

We finally got answers from a multi-disciplinary hospital-based program that specialized in developmental delays - we found it by accident after spending thousands of dollars out of pocket on counseling and social work, we finally went for what our insurance would cover. Turns out, an evaluation by a group of specialists is the American Academy of Pediatrics' recommendation (see under "evaluation" http://www.healthychildren.org/English/ ... rders.aspx )

My son's biggest two deficits now are a pragmatic speech disorder and rigidity; we were fortunate that those were finally caught by the doctors. His school is now offering therapy for the speech/social skills issues, which makes a HUGE difference, and, after starting off with therapy, we are slowly chipping away at the rigidity on our own.

Your description sound like a lot of aspie kids here.

My son at age 5 also didn't seem to fit any of the lists I found on the Internet or at libraries, even in books on Aspergers or ADHD. His eye contact was fine with people he knows well, and he didn't develop a recognizable special interest until after he was medicated for ADHD.

I highly recommend getting him tested with the ADOS (autism diagnostic observation schedule). Practitioners have to be trained and certified to give it, so you have a higher chance of finding someone who knows their stuff.

One book you should read is Parenting Your Asoerger Child by Alan Sohn. It has excellent descriptions if different "subtypes" of AS kids, and you may recognize your son in one if them.

I think we've all had the "bad parenting" assumption to deal with. It can really make you doubt yourself.

So perhaps this is the most important thing I can add to my previous post: don't ever, ever doubt your instincts. When you say you suspect there is something more that he won't just grow out of, trust your instincts. No one knows your child better than you do. If you think there is something more, then there IS something more.

Thanks, everyone.

Momsparky, I'm glad we finally got a speech delay diagnosis this year. He actually started doing a lot better socially (it was even worse) when he started getting the pragmatic speech therapy. I kept pointing out (to the preschool therapists) that he didn't seem to be able to do conversations and I felt like it was really damaging him socially. They evaluated twice (because I pushed for it) but each time said his active speech wasn't great, but his receptive was and that he didn't qualify. This time, when we showed up for the evaluation (which was by a different evaluator) I had no hopesat all that they would think they could help him. I was relieved when they found delays exactly where I had thought the delays were.


Zette, the place I called does ADOS, ADI-R and SCQ. I don't really know what any of them entail, but hopefully we'll find some answers. I will definitely check out that book.

DW_a_mom, I will doubt my instincts no more. I have suspected something was up since he was a baby.

-Fitzi