Insight Needed

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Hi Everyone, my almost 5 year old has been in EI since he was two for his speech delay. His speech is significantly better and he continues to progress but he's still obviously behind the norm. Everyone- his preschool teachers, his original speech therapists, play therapists- always kinda give me the same thought.... "Well I see signs of autism but there are definitely contradictory characteristics". Honestly I think I'm going to lose my mind soon. The past 3 years have been pure hell. Hell because no one can give me an answer. He just had his 2nd child psychology meeting yesterday and I'm awaiting an email from the Dr giving me her thoughts. Meeting 1 was with all of us and yesterday was a play session between the two of them. Her initial reaction was "If it is, it's def high functioning". So here is what I see.

Sleeping- I've had his bedtime routine nailed down since he was under a year old. He sleeps a solid 9 hours every night. Occasionally he'll wake up super early but when that happens he goes downstairs for something to eat and comes into our bed and pokes me awake to put cartoons on and he's content eating whatever it is he found until the sun comes up.

Tantrums- normal. Worst trigger was the stupid Ipad when it was time to turn it off. I took that away and he hasn't used it for about 2 months. I hate it and he's stopped asking for it.

Humor- I taught him "Guess what? Chicken butt" and he thought it was the greatest thing ever (the school is going to hate me but whatever.....he laughed at a joke)

Play- his play has gotten a lot better....meaning he's using the toy for its intended purpose. He doesn't have a toy/object that he's fanatical about. He does organize/line them up but he won't freak out if you mess it up...actually he kinda glares at you like, "Hey ahole, you really just did that".

Transitioning from activity to activity (as observed by psychologist)- during the meeting he was playing with Legos. She interrupted him to play with the Dry Erase board then quickly sent him to the sand table THEN was like, "oh look at all of these built Legos". Completely fine.

People other than family- he loves people. We go to amusement parks (he wants to ride everything), carnivals, his dad takes him to the high school football games and he gives everyone handshakes, he's a flirt and always finds the cute girls to follow around, he says Hi to strangers, and he salutes military, policemen, and fireman.

Hand Flapping- this has decreased significantly but when he did do it it was always when he was excited. His play therapist always made note that he did it for a purpose rather than subconsciously. He does rock when he's tired.

Randoms- so the little turd is smart. Letter/number recognition since he was 2, we read ALL the time and he's starting to spell short words, he does grown up puzzles with about 50 pieces, makes up songs in the shower. He doesn't have aversions to tags, sticky things, sand, etc. He loves music...is fine with crowds....he is not athletic, lol, poor kid is pretty clumsy.

Routine- I keep a pretty strict routine during the week but that's for my sanity as much as his. The weekends get switched up and he's pretty good up until dinnertime when he starts getting tired...then he's crankier but I think that's pretty typical.

Potty training- i hate it. He is not trained yet. He's fully capable of going and does sometimes without being asked but as a general rule, he doesn't. He doesn't care if he's soiled. I've tried m&ms. stickers, cookies, etc....all work for a bit but then he gets bored and the magic is lost. I've switched to the most generic uncomfortable pull ups imaginable and he's still the same.

Speech- I saved the "best" for last. Echolalia is still pretty rampant. I can point to anything and ask "What color" and he'll answer right away. If I ask "what is your fav color?", nothing. Subjective questions do not work with him. If I'm giving him 3 options I'll ask him a few times changing the order of the options and I'll get a different answer usually each time. It's usually the last option. He is not good with comprehension. We read a particular Elmo book every night....he has the entire thing memorized. I read one page then he reads the next. After his page is done he says, "your turn". If I ask him, "What is Elmo doing in the story" he won't answer "flying a kite". He still babbles when he's excited...it's almost like his brain is working fast than his mouth and everything comes out jumbled because once he stops taking he looks at you waiting for a response. HE knows what he's trying to say. He's fine with receptive language.

Autism, tourettes, and apraxia have all been mentioned to me. In closing he's a happy, inviting, funny, loving little boy. He's not hard to handle, actually he's pretty mellow. He has a pretty bad language delay but as I said he's continuing to progress but there is just something about him. Something in his brain isn't clicking the way it should be. Doctors are, as I'm finding out, kinda useless. I ask questions and they regurgitate checklists and paragraphs from the AAP website. It's impossible to hire a private speech therapist....he's on one waiting list and he's #120. The cost of that is insane anyway. He does get SP in his preschool so that's at least something. I wanted more since he'll be starting kindergarten next year but I also don't want to intentionally diagnosis him with something JUST to get healthcare benefits. I'm probably dumb for doing that because I think everyone does it but this is his life, his future and I want the truth. That of course may change when I have to get a 2nd mortgage on my house.......


Any way...this is really long now so probably no one will read it. Does anyone have any first hand insight they can share with me? I've gone from "yes he is" to "no he's not" soooo many times as far as him being autistic. I know no one is the same but there are always staple characteristics that he just doesn't fit into. This entire ordeal has made me crazy and I'm on the verge of tears every minute I'm awake because I just feel lost and alone.

Thanks-Lisa

It always depresses me when I see parents talking about the "right" way to play. As long as kids aren't hurting anyone or destroying anything, the way they play is perfectly fine. Please, for your kid's sake, don't get caught up in pathologizing benign eccentricities, whether play-related or any other behavior. There's nothing inherently wrong with hand-flapping, either.


Just stop worrying about it. It seems like it doesn't matter whether he is autistic, not at this point at least. Your kid is either getting school-based services or being "treated" at home for his problems, yes? What else besides that matters? If he starts manifesting some other problems—whether autism-related or not—then, at that time, you can start dealing with those problems. Unless there is something specific you need that autism diagnosis for, forget about it. Enjoy your kid's individuality and stop trying to decide whether it's autism.

The thing about diagnoses is that symptoms have to be clinically significant. What you have described (besides language delay) is not clinically significant, and his therapists seem to agree. So even if he has an autistic brain, he won't be eligible for an autism diagnosis (unless he changes). So there's no point in worrying about that diagnosis.

Let the kid play how he wants.

Anyway, i think he likely is autistic, level 1, but the most important thing is meeting his needs not finding the right label.

The best I could guess is "it's possible", but you'd be best to find an expert in the field.

Based on what you describe, it doesn't sound as though there is anything which you need to be overly concerned about at this time. Children will develop at different speeds for different things. Our child was quicker with some things, slower with others but overall he's done fine. There are some things which have me wonder, but for the most part, the main focus is letting him be a child.

Being a parent is something you can't study for, it's on the job learning 24/7, and there are not right or wrong answers for most things (I mean "should you sell your child" is obviously wrong

Don't be overly worried or fearful, children can sense that.

It's entirely possible my child could grow up well adjusted, have a good job and a great family. It's also possible he may have a few neuroses, but hey, we do the best we can for them.

Yeah speaking from personal experience, I can't remember any signs before I was about 8 years old and it took a good 10 years for a diagnosis anyways. If his brain is autistic, it might take years for definitive signs to become apparent anyways, so just don't worry about it for now.

Waaaiiit a minute...you're not my brother!

My nephew loves that joke, too. I don't think his mom does, though.

Like jamthis12 has said:

So it may be several years before you really know for sure. Since autism is predominately hereditary, the first question to ask "Does this trait run in the family?"

As for his delay in speech "He's fine with receptive language."
Autism is sometimes described as a social/communication problem. Processing auditory information is a critical component of social communication, and people with autism spectrum disorders typically have problems processing this information. One problem occurs when a person hears speech sounds but does not perceive the meaning of the sounds. For example, if someone says the word ‘shoe,’ the person might hear the sound clearly, but doesn’t understand the meaning. Sometimes the lack of speech comprehension is interpreted by others as an unwillingness to comply, when in fact the person simply isn’t able to retrieve the meaning at that moment.
Source: Auditory Processing Problems in ASD

From my own experience:
I do not currently have any speech impediments. But I am an old Aspie and had an entire lifetime to self-correct any speech impediments such as prosody speech patterns. So this general Aspie trait is not displayed. Maybe the reason why this trait is not evident is because the problem was corrected early at school. In the third grade the teacher saw a problem with the way I spoke. I thought it was due to my two large buckteeth. But anyways, I was sent to Special Class. Three days a week, special students along with myself were collected from their respective classroom and led to a secret hidden room off of the main school cafeteria. This happened while I was in the 3rd & 4th grade. The hidden room had a beautiful conference room table and very nice soft leather chairs. It was such a nice hidden room that I really didn’t mind being there. Our strange assignment during the hour we were in special class was to recite tongue twisters very fast and yet very distinctly. I thought it was a strange thing to do, but who am I to dispute a teacher. I remember the two types of tongue twisters that we recited. These were:

Peter Piper picked a peck of pickled peppers.
If Peter Piper picked a peck of pickled peppers,
then how many pickled peppers did Peter Piper pick?

Sally sells seashells by the seashore.
The shells Sally sells are surely from the sea.

I remember that it took great concentration to recite tongue twisters accurately. And you really had to work at it in order to say them fast.

If I did have a prosody speech pattern (such as unusual aspects of pitch, stress and rhythm, the prosody of speech, problems of speech volume, monotone or flat quality, unusual stress patterns, or over-precise diction with stress on almost every syllable), then perhaps this special class was a valuable tool towards correcting those types of anomalies.

This recalls another type of special education that I received. When I was growing up, I never enjoyed reading for reading sake. I only associated reading with schoolwork. The only exception to the rule was comic books. But when I entered high school, the requirement to read efficiently became extremely important. My school must have recognized my limitation and placed me in a strange type of special class during my freshman high school year. The training was a type of reading comprehension training. The closest I could describe this was a class in Speed Reading. They would flash a paragraph or two of information for a very brief period of time and then measure my comprehension. They tried to teach me tricks on absorbing written material quickly and effectively.

The problem that I had with comprehension might be described as follows. I would read the first sentence and then the next. But by the time I finished comprehending the second sentence, I forgot the first. So I would have to reread it over again. So after 6 or 7 sentences in a paragraph, I was totally lost. And I would have to reread it over and over again.

Luke Jackson [in The Complete Guide to Asperger’s Syndrome by Tony Attwood] described a trick he used to learn how to read proficiently. The trick was to read the material aloud. Most normal people learn to read silently whereas an Aspie learns to read by reading aloud. Attwood theorized that, “Saying what you are reading can facilitate comprehension.” I believe this to be true. Many times even today when I am reading something that I really want to understand and to remember, I will either read it aloud or read it silently just moving my lips.

So perhaps these approaches, reciting tongue twisters, speed reading and reading material aloud might independently be included in the Aspie training toolkit.

There are different types of Aspies. I am a pattern thinker. But there are some that are visual thinkers. They think in terms of pictures. If you say house to a visual thinker, they search their minds for all the images of all the houses they ever saw in their lives. Temple Grandin is a good example of a visual thinker and she has written a number of books. If you son falls into this category, then I think you might wish to contact Jason H.J Lu through LIVE Communication with the Autistic Species for advise.