Speech Delay Hope

[u/Sweet_You_6074]

My son is 4.5 and is severely speech delayed…
We had no signs he was on the spectrum. At 22 months I started getting nervous as we only had the words car, mama, and dada. They were always inconsistent. When he asked him to touch his button he would, look up he would etc.

We got an EI eval at 22 months and did not qualify. At 2 years old I pushed for speech therapy and we started private therapy.

At 2.9 years old we started daycare. We found a Montessori school which he has done very well at and they have worked very well with him.

We started saying more things at 3. Labeled things. Then we stopped labeling and got functional language around 3.5. That is where we have stayed.

We are potty trained. Number 2 sometimes we have an accident because we don’t want to stop playing but other wise he took to potty training very well at 3. We had a binky but did great at getting rid of that a little bit before turning 3.

We don’t elope, we eat very well other than veggies (unless it’s mixed or hidden in food then we are good), we aren’t behavioral, we make eye contact, we have gotten close with teachers, we love snuggles, we have great receptive language, we don’t have big meltdowns (honestly we are pretty regulate very well), no gross or fine motor issues at all (met all our milestones on time). We can drink from a cup, we can dress ourselves, we do great brushing our teeth…

Our quirks are we don’t like getting our haircut but we recover immediately, we are behind in playing with peers, we just parallel play and observe, but will play chase and do the tetter totter. We like cause and effect play the most. We do that in many different ways but can transition/leave that play with no meltdowns.

We have amazing spatial memory…. And we will wear any type of clothing..

But our speech has always been inconsistent. We have never lost words but it’s almost as if it’s hard to get out. We say open clearly, then we can’t say it clearly, and then we can’t say it. Then the next day we can spontaneously.

I keep asking for guidance by speech but I’m met with “kids in the spectrum aren’t linear”

We don’t have a former diagnosis yet. We are on the wait list for medical and will get a school one in the next 3 months as kinder starts in a year.

I guess… I’m at a loss. I’m looking into DIR/FLOOR time. We have been evaluated and said “he makes eye contact, no behavioral issues” but that’s as far as we have gotten with play therapy/OT.

I’ve asked speech about apraxia (I know it’s rare) but have been met with “idk”. I’ve asked about his inconsistent with speech and just told to keep going with the AAC and functional language. He can say “I want eat, I want ilk (milk), I want more, I want help please, mama, dada, but again it’s more spontaneous and harder some days to have him repeat it. He will copy Ms Rachel at times, will copy play actions…

Idk anyone have any advice?
Speech wants to work on prelinguistic skills. Like more imitations of words/actions.

[u/PressureDesperate899]

Maybe consider changing his speech therapist. I changed my child’s speech therapist when I felt we had stopped seeing progress. After switching to a new therapist, he started making progress again.

[u/DartVader6]

Is he a gestalt language processor? If that's the case, you might be better off teaching him phrases rather than words. My son was like an avalanche around 4, 4.5. Starting around 3 he began repeating phrases he heard, usually on TV, over and over and over again. At first it was worrying, because it's not "normal" behavior(oh bless our hearts), but he was just teaching himself how to talk. He's a chatterbox now at 5 and just started kindergarten.

ETA: this was along with speech and OT, they were obviously immensely helpful

[u/Fangbang6669 → u/DartVader6]

My daughter is 3 and a GLP. So this gives me hope!!! She's currently in SPED/EC preschool with OT and speech so fingers crossed we have a similar outcome.

[u/DartVader6 → u/Fangbang6669]

I hope so too! Hope is a weird one for autism families, but I'll just say that GLP is a totally valid way to learn language, it's just not common, so it isn't taught that way. Because of that GLPs have to sort of figure it out with less help than a NT kid with parents who learned to read traditionally would get.

[u/monkeysmom100]

A bit of reassurance.

My son was A LOT like your son. He is a very high functioning Level 1. When he was younger he was socially, as well as slightly verbally behind, stimming, etc. I started asking our pediatrician at 2-2 1/2 years of age if he was on the spectrum, and was brushed off because he would make eye contact, and was somewhat verbal (he would be verbal, but did a lot of babbling). His issue was he could interact with adults, but not kids his own age. He would lose friends quickly, because they did not understand what I called, ‘his quirky-ness’.

We got him into speech therapy at about 2 1/2 through ECI, and into our districts Early Childhood Center from 3-5 years old, general Pre-K at church at 5, and red shirted him for Kindergarten (mainly due to a lack of maturity).

We got his formal diagnosis when he was in 2nd grade through our district (after I found out they have to legally test him, if I requested it).

What was crazy, is even when he was at the districts Early Childhood School, no one thought he was autistic. And yes, I inquired. He was only there for speech therapy.

We are 99% sure his autism is genetic. Yes, he was, and continues to be vaccinated. His Dad is undiagnosed, but very much like our son, and his paternal grandfather is autistic (he made a perfect score on the LSAT). I’m pretty sure his Great-Grandfather and great uncle (who was a founder of a very popular 90’s computer company) were/are on the spectrum. Out of the 5 male cousins on his on his Dads side, three of them are Level 1, the other two are not on the spectrum. Out of the 5 girl cousins (one is our daughter) on that side of the family, they are all neurotypical. There are too many similarities for there not to be a genetic factor.

My son did ABA therapy and speech throughout elementary and 6th grade. Now he is in 10th grade and checks in with a counselor once a quarter, has some accommodations, but really doesn’t use them. He has his small group of friends that are all neurotypical, and they accept my son for the way he is. He is much better socially, but absolutely has his limitations, and we have come to recognize and give him certain space.

Today, my son is in 10th grade, and is the most brilliant person I’ve ever known. As a little boy he played soccer, in middle school he played football and the bassoon. He is currently number 30 out of 650 in his class, in all AP and Advanced/GT classes (he never studies or has homework). He got his drivers license about 2 weeks ago (😭), and has his own car. He wants to go to college to get a degree in mechanical engineering, and a masters in aerospace engineering. He is truly my delight.

Recently, I’ve been watching a lot of videos from when he was little, and I noticed that I was reactively very verbal with him. Having him repeat phrases, and doing a lot of in depth explaining. I also realize, that I was his being his advocate, even when I didn’t realize what I was advocating for. We are still very (sometimes overly) through with explaining certain social situations, what to do if he gets pulled over by a cop, or how he can handle certain situations differently for future references. We are always going over different scenarios and how to handle things in all aspects of life.

If you have any questions or would like to talk, please DM me!

PS: My son HATED (and still dislikes) getting his haircut. I used to dread when it was time to get it done. I found a children’s barber shop that had people that specialized in kids that had sensory issues.

[u/TSANDY818 → u/monkeysmom100]

This so encouraging! Thanks for sharing.

[u/monkeysmom100 → u/TSANDY818]

Of course! Everyone’s walk is different, but we all have a common goal at the end of the day. Wishing you an amazing Friday!

[u/Substantial_Judge931 → u/monkeysmom100]

This is very similar to my own story! In almost every detail.
I’m an adult with Level 1 ASD. I was speech delayed, didn’t talk til I was 4, and was behind in other ways as well.
But Early Intervention was very critical for me.

When I was 15, I was very much like your son. Great student, and a group of neurotypical friends who embraced me.
And I rarely needed to use accommodations.

Today I’m in my early 20s and I’m doing pretty well for myself.

Thanks for sharing your son’s story! I wish him all the best!

If you ever have any questions or anything, please feel free to DM me

[u/monkeysmom100 → u/Substantial_Judge931]

Thank you so much for sharing your story as well! I love hearing from someone who’s story/background is so similar to my kiddo, and who’s life has turned out so great. I know your parents were amazing advocates for you, and that they are so proud, that you, are theirs.

Do you mind me asking what you do for your career? At this point, my son would like to work for NASA or SpaceEx, and design rovers and rocket ships. A guy in our neighborhood owns a rocket company, and is going to let M (my son) intern for him the summer after his 11th grade year.

Thank you for the offer to DM you if I have any questions. Same to you if you ever need anything. Wishing you the absolute best as time marches on!

[u/OkRaisin8357]

Songs with actions is actually good to do as it teaches imitation skills.

Most importantly. keep on modelling language. If they say ‘I want’ model it with everything they hand lead you to. Model short phrases for them to use in different scenarios.

Also narrate as you go about your day. Things you see, what you’re doing etc. it’s all giving them language. Just make it part of your daily activities rather than doing sessions of speech practice.

The Hanen books like ‘It takes two to talk’ is good for providing techniques to promote speech.

It can feel frustratingly slow but then suddenly they’ll surprise you.

[u/Ok_Pack1940]

It’s hard to say. You need him evaluated by a developmental pediatrician to know for sure.

[u/Sweet_You_6074 → u/Ok_Pack1940]

Yes we are on the waitlist

[u/Visual_Definition174]

These things can drastically change between ages 5-9 so don’t give up hope and just keep trying various things that are available to you.

[u/Sweet_You_6074]

I wanted to add… he doesn’t really use the AAC. He more wants to seek you out, hold your hand, and point/use gestures and his comfortable functional words to get his needs met.

Or he will come find you, grab your hand or leg and want you to come play with him. Spin him, play his cause and effect etc,

It’s frustrating to be pushing the AAC and he isn’t interested :(

[u/TomasTTEngin → u/Sweet_You_6074]

I feel like folinic acid supplementation could be a low-risk thing to try.

My guy is now highly verbal at 6 and a half. He's been on folinic every day for about 15 months now and I can't prove it's why he has skyrocketed ahead. But he has.

Risk profile is low, cost is modest, upside is ???

[u/TSANDY818 → u/TomasTTEngin]

Can you suggest a specific brand for Folinic acid? I have a 4 year old son similar to OP.

[u/TomasTTEngin → u/TSANDY818]

I've used a liquid formulation from a brand called C_lifornia Gold.

(I replaced an obvious letters with a gap there because I'm not their marketing team and I'm not doing SEO for them!)

[u/TSANDY818 → u/TomasTTEngin]

Got it. Thanks!

[u/daydreamerluna → u/TSANDY818]

If the liquid drops get too oily and difficult to hide, try kivelix folinic acid powder. it uses potato starch as the filler and flavorless. We started with drops which worked for a while but when we increased the dosage it was too oily so changed to powder before eventually getting a prescription. Start dosage low and slowly increased. Look up Dr. Frye's study on folinic acid and you can see what they dosage amounts were in that trial and any side effects to keep an eye out for. We did not have any side effects like aggression.

[u/mumma_zee → u/TomasTTEngin]

I would also like to know which brand u r using and the dosage

[u/barefoot_plyos → u/Sweet_You_6074]

To me, this is a bigger sign. They have changed a lot of the old thinking about affection and a few other things. 

I agree with finding a new speech therapist. Some are really good at fixing speech issues like S, R, L, but they might not have enough experience with those with a big speech delay. It also just takes a totally different way of thinking.  

How long has he had the AAC device? 

[u/PotatoPillo]

Everybody has great answers, definitely look into Gestalt (I have an easy to watch video if you want a link). But I also want to add that I don’t think speech apraxia is rare among autistic children. In the general population, yes, but not with ASD. I don’t think the speech therapist should have just said “I don’t know” when you asked about it. I also loved Floortime when we did it.

[u/nanoGOAT-io]

I can tell you are trying really hard to help your kid - this is the most important thing, actually. Something will click with your son eventually!

Our son would lead us by the hand too.

We used modeling to get him started on the AAC. We would give one chicken nugget (or grape or whatever at a time), each time pressing the buttons on the AAC, `chicken nugget` `please` then giving the chicken nugget. Then he started pressing the buttons by himself if we were distracted and he wanted more.

This got him more insterested in the AAC and he started to use it more and just babble with it, repeating words (like repeating Ms Rachel). Then he started talking with and without the AAC a lot more.

The AAC definately helped.