2 y/o with speech delay

Question

My son turned 2 in April. He is currently in early intervention for speech, they also are working on his receptive language.

When he was 10 months old he got ear tubes after having ear infections for several months. After his tubes were placed we felt like he stopped responding to us, when we called his name or yelled he wouldn’t look. We were concerned about his hearing for several months following the surgery and he couldn’t get through the first hearing test he had but was able to pass at his 2 year appointment. The ear doctor said that his ear infections and tubes had nothing to do with him not speaking but I truly felt that there was a clear difference after his surgery and when they did a pressure test on his ears at 16 months it seemed to correct the problem as he was way more responsive to us but still only saying minimal words.

Well now we have been doing EI for almost 6 months, he has developed a few more words and signs and it’s more consistent with showing us what he wants. He loves to play with his sister and cousins and seeks out other kids when we go to play group or the park. Our EI therapist said she would like to see him be more reactive to her calling his name and for him to do more imitation play although he does it with us. He also gets hyper focused on a toy or activity he is playing and will ignore you if you try to get him to do a different task or activity which I feel is a typical for some toddlers but seems to concern our EI therapist . She has also suggested having him tested for autism but we feel he is too young and everyone who meets him who understands autism or has worked with kids with autism feel that he doesn’t show the typical signs. I should add that he makes eye contact, interacts with other kids and adults that he knows well or even has only met a few times, he also is entering the two year old tantrum stage but it never lasts over 5 minutes if that and he is redirectable.

I am curious peoples thoughts on waiting for testing or giving him more time to develop. He is also starting daycare in a few weeks which will be two full days every week. I just feel there is so much pressure to label kids and it’s becoming very overwhelming for my husband and myself as we do all the suggestions given to us and have seen progress but wish he was saying more. Thank you for any suggestions or words of encouragement.

Answer 1

This got too long for a comment, so it's an answer of sorts.

I just feel there is so much pressure to label kids...

I don't believe that's true, but I'm biased by nature towards intervention, so... A label isn't detrimental except perhaps to emotions. It's scary to have a label that one might associate with a negative. A label is just a diagnosis. Your experience with the diagnosis of multiple ear infections seems to have had a negative result overall; that's highly unfortunate and you have my sincere sympathy. I can understand your reluctance. It's possible, though, that the regression in speech happened to occur around the same time as the tubes were put in (correlation does not mean causation). Regression occurs in young children with autism about 30% of the time. It may be the first symptom.

In medicine, a label/diagnosis points towards potentially successful treatments or interventions. I'm guessing that's true in social work and other occupations as well. One can have a puzzling array of symptoms and just address each symptom or one can have a diagnosis and start dealing with the underlying cause (which imo is better.) Let's say your child started to limp regularly, and it was getting visibly worse with time. Would you be content to just give the child tylenol? At what point would you ask a doctor to find out the underlying cause? A discovery that the child had juvenile rheumatoid arthritis would be better made early than after complications started.

That's a very long way of saying there's a reason your EI caregiver suggested getting your child tested for autism: there is more than one intervention for autism, and there's a better outcome with early diagnosis and treatment/intervention than with late, even if it might only be to create an "autism friendly environment" for your child and yourselves.

I am curious peoples thoughts on waiting for testing or giving him more time to develop.

Those are my thoughts. In short: better to know early than after more time spent without the best treatment.

it’s becoming very overwhelming for my husband and myself as we do all the suggestions given to us and have seen progress but wish he was saying more.

I can only imagine how difficult this is not having gone through it myself, but I can imagine it's absolutely awful. You hope and wait and do your best but don't see the response you hope for. This is your child! Is there anything more important?

But in the end, my opinion is only that of one person. I'm a strong advocate of second opinions, but from knowledgeable persons, i.e. people who deal with this day in and day out, and that does not include me or many other people on the internet. It doesn't even include everyone who meets him, unless you run into a very disproportionate number of pediatricians, early interventionists, and other specialists. (The average person you run into may not know the earliest signs of autism, or may naturally want to reassure you.) Read about it, educate yourself, find out what symptoms are common in 2 year olds vs. 5 year olds with autism spectrum disorder. Get some support for your spouse and yourself, and advocate for your child. I hope you get some relief soon.

_{Early Diagnosis of Autism Spectrum Disorder: A Review and Analysis of the Risks and Benefits}.
_{Clinical impact of early diagnosis of autism on the prognosis and parent–child relationships}

Answer 2

I am curious peoples thoughts on waiting for testing or giving him more time to develop.

I have a 2-year-old in nearly the same situation. I was almost shocked to read this and half-convinced you were talking about my kid. He had hearing issues, tubes, and we have been working with a special needs caregiver for the last few months who suggested getting him tested for autism. It's overwhelming and sometimes discouraging for us as well. We love him and wouldn't trade him for anything, but we saw other kids his age talking and engaging with their parents at more advanced levels, and it worried me that he will miss out on a normal childhood. Here's a little more about our experience and what I would suggest.

When we noticed his speech delay at about 18 months, we met with his primary care physician who referred us to a local government program. The program did a developmental assessment and concluded that he did have a speech delay, both receptive and responsive.

They enrolled him in the program which gives us free in-home visits with an autism specialist every two weeks, and a free preschool for 2-year-olds with developmental delays and their parents. They also referred us to a great speech therapist. They suggested we get him assessed by a psychiatrist specializing in autism. We scheduled the appointment with a highly recommended doctor, and the earliest opening was about 6 months out (now about one month away).

Although we aren't certain he has autism yet, the specialists, teachers, doctors, and other parents we've met during this process have been an incredible resource for us to help us learn how to help him and also help ourselves as we navigate his speech delay. As others have mentioned, putting a label on the root cause of his delay allows us to address the root cause.

People with autism see the world differently than the rest of us, but they can still be happy, intelligent, and important to us and the world. They just need people supporting them who understand their perspective and know how to help them focus their abilities toward positive things. At the end of the day, that's what we all need.

Getting your kid assessed and diagnosed will open up a wealth of resources to help them. Specialists, teachers, and communities of other parents with children who have autism can all help you understand what your child needs and how you can help them. Although this process has been difficult for us, pursuing a root cause has given us hope, and I would recommend it to anyone who is facing a similar situation. I wish you the best, and know that you don't have to face this alone.

Answer 3

First my sympathy towards your tough situation. I can only imagine how hard this must be for you, the parents.

My suggestion is threefold: Conduct more testing and observation. Prepare teaching him sign language if no improvements are showing up within some time. But most importantly don't stop talking with him and encourage him to make sounds either with his mouth or with some kind of instruments.

Testing ideas:

You can conduct more "homebound" testing to get a clue about the nature of the situation. Meaning: Is he just not used to his name, is he not able to hear at all, is he just not interested, what are the sounds he is reacting to clearly?

Try find different things that can make sounds. Like some bell, a tooting thing, a clapping thing (can be improvised with a bunch of keys, some spoons, maybe those metal clicker frogs, etc.). Then wait for an opportunity when he is concentrated on something to play with (you can of course give it to him also). You and your husband should be on opposite ends in the room and both have the same utensils at hand to produce noise behind your back, so he cannot see this. Then one of you starts. If your son does not react, the other repeats the same sound. If he still not reacts, increase the volume. If still nothing, switch to another sound.

During this observe his reactions.

• Is he even raising his head?
• Is he looking (in the right direction)?
• Does he engage the one who was making the sounds?
• What about the volume at which point he does react?

This should give you a fairly good picture of his hearing abilities and his interest in discovering things. Don't overdo it or split up in more than one session, you don't want to stress him or something.

You can also hand him a soundboard. A toy with some buttons each producing a different sound, maybe even some spoken words. He should be interested in pressing all the buttons and maybe even find a favorite he is playing more often. If he is not interested or being able to listen, he will abandon this toy quickly and never touch again (because it is too boring to him).

Instead of something electronical you can also just hand him some music instruments. Like a rattle, small xylophone, a harmonica, etc.

Concerning uttering words and sounds, the following questions can give you more clues:

• Is he uttering just sounds or is he able to reproduce words?
• Can he say "ma-ma", "ball", or something that easy which clearly shows he can form syllables he must have heard from someone?
• Does he make the same kind of sounds in the same situations?
• Like when being fed, kids tend to make some loud "wording" like "ma ma ma Ma MA MA" until they get the next spoon. If some words are learned, they utter one-word-sentences like "more" when they are ready for the next spoon.
• What about simple "Yes / No" reactions? Is he shaking or nodding his head only? Or does he say a loud and clear "NO" if he for example is offered a vegetable he does not like.
• Is he answering to questions like "Do you want some chocolate?" (Yes/No), "Where is your sister? / Bring your sister" (should point or run to her).

My second advise is, as mentioned:

If he has trouble with hearing / wording, making clear reproducible sounds in same situations, you might want to prepare him for learning sign language. I cannot give you an advise when this would be optimal. It could be that he prefers signing over learning to speak if done too early. On the other hand learning to sign is easiest in young ages. But of course, that would also mean you/your family have to learn signing also.

One advice to keep in mind:

Do not stop talking to him, just because he is not reacting and also not reacting to the initial calling his name! On the contrary, form clear and normal sentences in every situation you have with him. Comment your actions if he is observing you and shows interest. Paraphrase his actions, while playing. Ask him some questions, even if he is not answering during play. Sing to him, play music, animate him to dance, give him a musical clock (a stuffed toy that makes sounds when pulling a string), let him do things that produce sounds other than spoken words. He needs to have the opportunity/to be stimulated to make his own sounds, because he is hearing those sounds and is encouraged to make his own sounds. (Still, be sensible of course, do not bombard him all the time, even if my paragraph looks like that).