RE: Kids w/ Classic Autism, PDD-NOS & Speech Delays

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At the age of 4 we tried to get an assessment/diagnosis for our daughter. The psychologist couldn't get her to cooperate and designated her cognitively challenged but with some non-verbal intelligence skills (the hyperlexic tendencies).

We tried again at the age of 4.5 and this time we got the HFA DX. The prognosis was she had a severe developmental delay and concurrently she was not accepted into a private school because of they claimed she had behavioral issues and should be enrolled in a special school for ASD kids.

We ignored the advice and found her a general government school when she was 5 and started bi-weekly speech therapy. Coincidentally she started having brief conversations at around 5.5 yrs and we are now confident she can understand most of what we tell her (compliance is another thing of course). The headmaster of her current school is thrilled to have her because of her academic achievements. She only just got a mathematics award for her prep class.

If your son is hyperlexic then my advice is ignore the DX of cognitively challenged as he will come around. Most important to start the speech therapy as early as possible. If we started speech therapy 2 years earlier when my daughter was 3 she would probably be more conversational now.

I agree, my wife's reading sessions are probably more effective than the speech therapist simply because my daughter is more comfortable at home and my wife knows how to keep her interest. Having said that the speech therapist provides my daughter a professionally endorsed therapy, gives us new ideas and keeps us informed of our daughter's milestones.

It's a really hard decision to quit one's job, it's not just the money, there's also our career development being stalled.

I totally agree to start the speech therapy early. My son has mainly done home-based speech therapy (as much as 2 hours/day with me, in addition to watching speech, reading, and preschool videos whenever I couldn't work with him).

He speaks well now and did well on his IQ test in January in the speech/vocabulary areas, as well as on a private speech test whenever recalling/retrieving information was not involved and whenever the focus was not articulation. (What did you do at school and where did you go this morning are actually puzzling questions for him.)

I'm not going to say that I'm a brilliant teacher, but I'm good at making, finding, and selecting videos and other speech aids.

The school finally agreed to give him some weekly group speech therapy starting in January (they had twice refused previously), and he is also going to weekly private speech therapy. It is not enough to accomplish much, as far as I can tell. He learns more at home, where we support everything with visual aids and written text, and there is a lot more therapy.

We had similar feedback when my daughter was 4. I think this is biased because if the child does not respond verbally then the assessor has to give a low score on information retrieval based indicators. In my view it does not gauge cognitive process correctly.



I read your earlier post and I am intrigued by selective mutism. May I ask when you were a child did you actually have ASD type symptoms such as sensitivity to noise? This is the only behavioral issue my daughter has, she gets distracted by noises and I often wonder if she has problems filtering out external noises so she can focus on listening and talking? If the noises get too much she will have a meltdown.



How does Prozac hep?

If your son is willing to sit with you for 2 hrs then you are doing well. My daughter has decided mommy will read to her while daddy is only good for horsey rides and playground.



Our school does not offer speech therapy, we had to pay for a private therapist to come to school.

Well, he never really sat with me for two hours at a time--it was over the course of an entire day. I would do flashcards and books with him during every meal and during bathtime and before bed.

Nowadays, he won't sit with me so long, and I currently have an ABA therapist working with him on his reading. She can get him to engage for a solid 2 hour stretch.

I did have symptoms of ASD as a child, I think, and have a first cousin with classic autism. I think that it was always HFA or AS combined with selective mutism (and later, social anxiety), though. Very much a loner as a child--walk around the edge of the playground or read a book during recess, not into pretend play at all, a very nerdy teen.

I read some articles about hyperlexia and selective mutism when my son was younger and having a lot of issues with speech, and decided to teach him the way that I thought that I might have learned. (My parents took me to the library constantly as a child).

I have read that hyperlexic kids can catch up on speech by the time they are 5 or so, so we have hope there.

Big problem for us is that we are an American family living in Japan. I came out here for my job a few years back before we had kids. The issue is that we speak only English at home, so that's primarily what he's learning, but once we go outside there is no English. He totally ignores other kids at his day care or the playground, but they are approaching him in Japanese so I wonder how much this has to do with it.

There is esentially NO English-language support here (there were a few places but they closed) and even if we wanted ABA or speech in Japanese insurance would not cover it.

We never intended to stay here premanently so it's probably a good time to think about heading home, especially considering everything else that's been happening here (earthquake and related disasters.)

Oh and I definitely had some ASD traits as a kid. If they were diagnosing AS back then I wonder if I would've gotten that label...I had no speech delay but I remember in kindergarden I had no idea how to approach the other kids. I used to stare at water and stuff like that.

Hyperlexia is quite a interesting condition. The literature seems to indicate that 5-10% of all hyperlexics are on the ASD spectrum and prevalent in children in the higher end of the spectrum (in terms of intelligence). It does not seem to modify behavior as Hyperlexic ASD kids seem to get all the symptoms typical of ASD such as lack of eye contact, sensitivity to noise etc.

In the US there are Hyperlexic associations and support groups
i.e. http://westwingpublishing.com/hyperlexia/Welcome.html

But I haven't come across any such groups here in Australia. Indeed my daughter's psychologist does not acknowledge hyperlexia as a condition that can be diagnosed?

That's exactly right. The literature suggest between 4-5. In my daughter's case it was a bit later because we were hesitated before plunging her into speech therapy.



Were you effected by the nuclear radiation? I think it would be wise to consider moving given the uncertainty over tectonic stability in the Pacific rim. In addition the language issues are a double whammy. Is there an American consulate within travelling distance from your home? They often organise parent groups etc so at least you can keep in touch with other expatriates and their kids.



Yes after joining WP I diagnosed myself online and I am firmly on the spectrum, In addition my brother had similar symptoms to my daughter as did my father. We are a family of geeks and nerds so the autism link seemed to bring everything into context.

We are not in the evacuation zone but there are other issues than the radiation now. Many power plants are still off line since the earthquake and the gov't is asking us to cut back on electricity...so a lot of places don't have the AC on, for example. Train services are being scaled back, too.

We do know other English-speaking families with kids the same age but they don't have speech delays and also speak mostly Japanese (due to being around a Japanese-speaking mom most of the day.) So we are kinda isolated.

We have definitely found ASD traits in other family members. My cousin has a kid the same age who is speech delayed, I don't know if he has a diagnosis of anything yet. My brother-in-law didn't speak much until he was 5 and had other issues. He is a police detective now and he said the ability to hyperfocus has made him very successful. There are others, too.

One thing about my own kid I wanted to mention, he doesn't really seem to have a lot of the sensory issues or stims usually associated with ASD's. Just visual stuff - he used to love to stare at water and things spinning (fans, wheels, etc) but that has pretty much resolved. He doesn't have sensitivity to sound and I've never seen him toe-walk, rock, flap his arms, etc. Only real stim his has is perservating on letters and numbers. Last night he was counting to 100 over and over till he dozed off.

As far as I know hyperlexia is not a stand-alone diagnosis.

I will also say that hyperlexia can be encouraged.

With my older son, it became apparent early on that he was a much stronger visual learner than auditory learner and that he could learn words by sight. I decided that, to get him to speak, I would present any phrase, question, whatever with text, a picture, and sound simultaneously (a multisensory approach). We also used lots of educational videos with subtitles and close captioning. Many of the better speech videos are close captioned also.

When my son was about 3, I read about hyperlexics having a better prognosis, figured that I had been one as a child, and that I would make my son a hyperlexic if he wasn't one already. (I figured also that I might end up having to use text as a crutch and that his speech might not be good to go by the time he started school.)

The doctor who did my son's evaluation basically considered his obsession with numbers and letters to be a repetitive behaviour, similar to how some kids line up toys or perservate about trains.

Glad to hear it. I would be careful of what you eat, particularly avoid seafood caught locally.



Sorry to hear this. I think for your son's sake it would be a good idea to explore the option of moving to an English speaking country. Just out of curiosity is he learning Japanese at school? I often wonder if ASD kids with speech delays get confused when they hear more than one language?



My grand dad on my father's side is the likely source of the ASD in my family. Looks like family trees are useful for something. He had a degree in English literature from London University and was a prodigious reader of books.



LOL! sounds just like my daughter! she is currently watching a youtube video on multiplication. She actually finds doing equations very therapeutic. I am still not sure how she learned to carry over numbers in long addition, division and multiplication? My wife jokes she must be memorizing the equations and answers together but I test her and she seems to be using some sought of systematic method. This is where the lack of detailed response back to us is a little frustrating. Would like to know these things.

My daughter also has no stims except for the noise sensitivity. We saw an OT who thought the negative reaction to noises is more likely when she is bored than when she has a structured set of activities she is enthusiastic about. She also tends to stare in the distance rather than give eye contact but she often does pin us down with a direct look.

According to the Hyperlexia Association in the USA 90-95% of all hyperlexics have a stand alone condition? I also find this hard to believe.

Yes I have read this too. I think the better prognosis is related to their ability to absorb so much data at an early age. When they eventually decode the data they have a larger library of info to draw upon.