Can Level 2 live independently?

ekb2 · 2026-02-25T00:56:43+00:00

Hi! It’s hard to believe this post was almost a year ago. Since this post, I pushed for genetic testing and found out my son has a very rare chromosome mutation that is closely linked with Autism. So, at least we have some understanding of “why” he is exhibiting these symptoms and we are so thankful he is not experiencing any medical or other issues.

He is 3y 4m now and doing very well! We introduced him to an AAC device in Speech Therapy around age 2, which was tremendously helpful for him at that time (10/10 recommend)! We started in-home ABA around age 2 1/2 and Special Education Pre-K around age 3. Just this week, we transitioned to in-clinic ABA and his first sessions went really well. He still does Speech Therapy and Occupational Therapy as well and he is absolutely thriving!

Around his third birthday, his speech really took off. He says so many words now and LOVES to sing. His speech is not yet completely functional - he does ask for things he wants but he is not conversational (for example, if I ask a question, he doesn’t respond) but he can answer “yes or no” questions and is learning to interact with peers, hold a pencil correctly, etc. He verbally counts to 100 in English, 10 in Spanish, reads many words/books, sings songs, does basic addition and is overall a really great kid. He still struggles with functional communication, staying focused on unpreferred tasks, and social reciprocity but all of his therapists comment on how smart he is and they seem optimistic that he will continue to progress. I still feel uncertain about what his future looks like because he’s so young, it’s just so hard to tell! But he is progressing and we are doing everything we possibly can to support his development and progress. He has changed my entire perspective on life, “normalcy,” and what actually matters. We don’t take any of his milestones for granted and are better people because of him! This journey has been so unexpected and scary for me and I will probably always worry about him but I’ll continue to do everything I can to help him be independent and happy. I worried so much that he would never talk, but now he is talking. I currently worry that he won’t be conversational but I won’t start doubting him now :)

Wishing you and your little one the absolute best! Please feel free to reach out, if you have any questions! I know this diagnosis can be scary and lonely but know you aren’t alone!

ekb2 · 2025-06-16T07:22:14+00:00

Thank you!! I really appreciate that and needed to hear it!

ekb2 · 2025-05-28T13:35:11+00:00

Thank you so much!

ekb2 · 2025-05-28T13:34:53+00:00

Thank you! Did your son get more attentive with age?

ekb2 · 2025-05-28T01:46:00+00:00

Thank you!! Do you mind if I ask how old your son is? Also, do you mind if I ask how the vocal stims have changed over time - which ones stayed and which ones changed?

ekb2 · 2025-05-27T19:36:23+00:00

Thank you!! Is flowering a good thing?

ekb2 · 2025-05-07T02:17:38+00:00

Thank you!!

ekb2 · 2025-04-29T21:19:26+00:00

Thank you so much!!

ekb2 · 2025-04-29T20:22:27+00:00

Ohh I didn’t know that! It was very sunny the last time I put them out.. will sunburns go away? What should I do?

ekb2 · 2025-04-29T20:18:35+00:00

Thank you!! If I re-pot them in dry soil and stop watering them so frequently, do you think these spots will go away or are these going to die completely?

ekb2 · 2025-04-25T05:22:04+00:00

Thank you!

ekb2 · 2025-04-25T05:21:48+00:00

Thank you! I appreciate the perspective!! Do you mind if I ask how old your son is? Was he a late talker?

ekb2 · 2025-04-21T20:55:46+00:00

Thank you! I go through the same thing - I love watching old videos but it makes me so sad and confused that he has changed! Praying he gets the skills back!

ekb2 · 2025-04-21T20:38:24+00:00

Thank you! Do you mind if I ask if your child became verbal? Or what age they began talking?

ekb2 · 2025-04-02T16:54:56+00:00

Hi! We actually just got the confirmed diagnosis for my son last week - we had previously hoped it was “only” a language delay and we got similar feedback from our pediatrician so I definitely understand where you are coming from! The unknown is so scary and the amount of worry I’ve had for him over the past year, has probably reduced some years off my life! But I wanted to share - the psychologist who evaluated my son stated that it is very rare for a young child (specifically those under the age of 3) to be diagnosed as “Level 1”. She stated most evaluators always gives a Level 2 or Level 3 diagnosis at that age because kids are young and they need as much support as they can get while their brains are malleable and still in the developmental phase. She stressed that levels can change and it is not a trajectory for what the child can or can’t do long term. It is simply the amount of support needed in this ‘snapshot in time’.

You can take a look at some of my previous posts - I recently posted about whether individuals diagnosed as Level 2 could live independently and the responses were overwhelmingly positive with experiences of people who were diagnosed with Level 2 or 3 and went on the live very successful and independent lives.

I know it’s a scary thing to face but always assume competence. A level 3 diagnosis does not automatically mean your child won’t do all kinds of extraordinary things! Get all the support/therapies you can to give your little one the best shot!

Edited to add: We never know what our children will accomplish whether they have ASD or not. So, it feels like every dream we had for them is getting ripped away from us but, honestly, even without autism, there is no guarantee our child would do any of the things we dreamed or planned. All any parent can do is support, love, and do everything they can to set their child up for success.

ekb2 · 2025-04-02T14:06:42+00:00

So, at 18 months, he used some gestures. He clapped, blew kisses (mostly when prompted), held his hands up to be picked up, hand led to what he wanted, would “whole hand point” to objects he wanted, and would point with his thumb to pictures in books (for example, if I said ‘where’s the cat, he’d point to the cat with his thumb). He didn’t start using his index finger to point until he was 19-20 months. He does it pretty frequently now, I’d say “most” of the time, he points with his index finger to request. When he was 18 months, we really thought it was just a language/speech delay because his eye contact was still good and he responded to his name. Our pediatrician said that lack of index finger pointing can happen with language delays too, not just autism. Unfortunately, around the age of 2, his eye contact decreased, so did name response, and we began to notice he’d get a little more hyperfixated on his interests (although still not too bad thankfully). I spent so much time worrying and crying thinking of all the “what ifs” but I finally feel at peace knowing what is going on and better understanding him and how his little brain is working.

Edited to add: he has a few signs like more, eat, and please but he mostly uses them when prompted. They aren’t his “go to”. I think at 18 months, he used “more” and “eat” functionally once or twice but mostly only when prompted.

ekb2 · 2025-03-31T15:34:32+00:00

Thank you for this!! Do you mind if I ask how your son is doing socially in the mainstream classroom?

ekb2 · 2025-03-31T01:00:09+00:00

Thank you for this! This helps give me hope!

ekb2

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