Question on memory / ability.

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I don't know about the abilities of a 5 year old with intellectual disability, but I know that opening a locked door and independently going someplace you've been before is not beyond the ability of all older kids and adults with ID, even though it is beyond the ability of some.

ID comes in degrees of severity, and some people with ID grow up to live independently in their communities with varying levels of support. I don't know how many of the people who live independently/semi-independently might also have autism in addition to the ID (which complicates things since autism can make learning and independent living difficult all on its own).... but basically I'm trying to say that even if your son does have intellectual disability (which he very well may not), that doesn't mean he cannot learn things nor does it mean he won't develop any skills to take care of himself and participate in his community.



My guess is that it doesn't 100% rule out cognitive challenges (because autistics can have extremely uneven skills/cognitive development, even savant skills), but it does suggest cognitive strengths in spatial things and long-term memory.

My nephew is 9 and was non-verbal until age 5, though it was apparent by that age that he was listening and comprehending, if not responding appropriately. The schools misdiagnosed him as ADHD and ID, and I believe the word "demented" may have even been used! But his diagnosis was changed a few months ago to ASD BECAUSE of how verbal he is finally getting now, 4 years later. He's still quiet unless someone he knows well wants to talk about his interests (ie, cartoons and video games), and now that his verbal fluency is starting to catch up to his comprehension, his "intelligence" is now, beautifully, being revealed to all of us. I would think it's too early to judge your boy's intelligence, but his navigational skills ought to encourage you a lot. Incidentally, my nephew could also have done something like that at 5....in fact when he was 5, we all went camping for a long weekend and he quickly demonstrated an understanding of our coordinates to the parking area , etc. This was demonstrated when he bolted on me one afternoon and ran almost a quarter mile straight to where the car had been parked the night before!

Wow, thanks. That actually sounds like the Montessori activity I did with my daughter, but of course, she had to feel and tell me what it was she was feeling. I think I still have the "drawstring" purse I used with her for this activity somewhere around. That would be perfect as it would hide the object completely and all he is matching by is the texture / shape, too ! ! I don't know why I didn't realize I could modify this feel-and-tell into a feel-and-match activity. Thanks so much for the heads-up, this will help greatly.




KOR, we have been in this home for a while now and he has had lots of practice with this door. It was actually my daughter who had the brilliant idea of teaching him to open the door, without permission from us, but now that he has learned it, it is difficult to teach him to "unlearn" this skill. He has some self help skills now but is still not 100% toilet trained which is my biggest worry as this will blight any little chances he has of being mainstreamed with support next year.

You are one of the most helpful and articulate people around here. I have seen posts from you that have a depth of analysis that I don't see from some NTs. It just seems amazing that you should have a label of ID. I am especially interested in your language & communication development. Could you share ideas & tips on how to help him learn to communicate ?

After working with him for weeks, he is starting to get the concept of pointing, although he won't always reference me with eye contact when he does point, but he can point ! He also can has some prompted signs and we are looking at PECS. He showed signs of hyperlexia at age 2 but seems to not know his alphabets anymore. I would love it if he could learn to read & write. Any ideas / help for me ? Thank you ! !






Yes, we are installing a dead bolt at the top of the door. Peace of mind is priceless.




Thank you !

That is what the district wants me to believe. That because he couldn't talk, he was MR-ed (they actually used that word). He is now being homeschooled and gets private therapy and has gained some skills, but communication / social skills are still yet to emerge. But he is a delightful boy and I am not giving up on him just yet.

Did your nephew have good receptive language, play & social skills before the expressive language emerged ? In a parking lot, my son knows exactly which our car is, but we also usually tend to park at our "regular" spots when we go out to familiar places like the mall, grocery store etc.

I strongly suspect that my husband is on the spectrum and was a very late talker, too. Claims that his earliest memories are from age 6 which makes me go ???

He is in IT and is a very quiet and introverted fellow. He has actually told me that it hurts him to speak or hear a lot of words ! Prefers to text me if we are at different places and I can honestly not remember the last time he picked up the darned phone to talk to me. During our weekly calls to his parents, it is his mother & I who are actually talking ! He also does not have a lot of "work mates". He is friendly, but not social. I am also equally sure that HIS father - also a very quiet & introverted person, but a BRILLIANT mathematician - is just as firmly on the spectrum. FIL never talks unless he is directly addressed. He also never participates in a discussion unless it involves mathematics - his special and obsessive interest !

Something about my FIL & DH has always seemed different to me. I just didn't realize that it was autism until it happened to my son.

I do know that if his father & grandfather were both late talkers, my son is quite likely one, too. But they are brilliant people whereas my son cannot complete a simple inset puzzle by himself at almost 5. So, I don't know. Can you share your nephew's cognitive and play development, please?

In what ways is your son delightful? I'd love to hear more about his character, what seems unique about him, and whether you have found out what really interests him? My nephew is very interested in action figures, cartoons, video games, and has a really good hand-eye coordination (he is very 'winning' at video games)! He loves being around animals, and he's really good to them.

Also, he loves to sing to himself when playing with his action figures, as if adding theme music to their antics. I think he's always been very imaginative in playing with his action figures, but he has never been able to strike up a friendship with anyone his age. Though, I think at 9 he may be ready for that. I also suspect he may turn out musical, but he hasn't learned to read or write yet (though he's clear on the concepts). Teaching him to read is going to be my brother's highest priority when my nephew comes to stay with us this summer...and it sounds like he will be here a few weeks, at least.

From what I understand, learning how to learn is the first step.

I was just talking with my brother and we agree that since age 5, his receptive language ability has only lagged slightly behind his age group. It's the expressive language where he's years and years behind. But now it looks like he may catch up yet, in terms of speech fluency.

My son is a very loving child. One of the reasons we never realized that he could be on the spectrum at age 2 / 2.5 was that he seemed very social. He would go up to anyone who had a remote control or a preferred food item without any fear and "beg" for the preferred item. He also has never had problems with transitions, and / or working with new people / new environments. He does not expect rigid routines and is fairly flexible. His delays have always been in terms of cognition and communication, and now that we know more, in social skills. He uses people as a means to an end - access to needed / desired items - and not because he likes people. He seems fairly indifferent to their presence. One good thing in the past was that we have never had problems taking him to restaurants or shopping centers. I say in "the past" because he has recently begun loud vocal stims which makes it difficult to keep him in any place for a long time. The vocal stimming only abates when he is watching a favorite music video or when he is physically active.

The district told us that he has more cognitive challenges than challenges due to his autism and to put him in a school for kids with ID as opposed to autism. We refused because the placement was nothing more than glorified babysitting / respite care. Thanks but no thanks.

His passion is music and the great outdoors. He loves to climb, swim and ride his bike. And music ! Lots and lots and lots and lots of music. He does not get the concept of video games. Actually, he cannot even work an IPAD, unfortunately, but we haven't really taught him how to do so. He has delayed fine motor skills, too. He can string large beads, and stack a block of 5 really small cubes, but he cannot button his shirt or do the zipper on his pants. He can dress himself in elastic band pants and t-shirts. It is probably great that we live in a temperate region without weather extremities or we would have been in a lot of trouble. He can eat by himself with a spoon, but cannot hand-feed parts of a whole (for example, tear out a piece of bread from a slice). He can finger feed bite sized portions of food.

Thing is, there are ZERO play skills, leave alone imaginative play. He is indifferent to animals, unfortunately. My neighbor has a very friend lab which seems to like him, but he ignores that poor animal for the most part.

It looks like your nephew is very high functioning with a lot of skills. My son had NONE of the above self help skills last year and they are here now. Receptive language is iffy, too, but better than where it was last year. I think he will continue to progress, so patience is key. I am not as hung up on speech as I used to be as long he can communicate via writing or signing !

Writing, I think, will be the key to unlock his beautiful mind. And I have no doubt that it is beautiful. Just need a way to access it.

My daughter is 7 and sounds very similar to your son in terms of her development. In terms of our families priorities, wandering is our highest priority. Above speech, toileting, meltdowns and disregulation, above everything. I recommend getting your son a medical alert bracelet ( stainless steel with the Double S clamp is almost impossible for a child to remove on their own). To date I haven't found a GPS tracker that my daughter wouldn't be able to remove.

I'd recommend visiting the site, http://www.awaare.org/. they have a Family Wandering Emergency Plan that We've completed and given the the applicable parties. The site has other useful resources like social stories and a lot of really good information on wandering and elopement. It sounds like your taking precautions to secure your home which is good.

That's the easy stuff, preventing your child from wandering is where the hard work starts. The best place to work on wandering is out in the community. I take my daughter everywhere with me and we practice all the time. I have stop and go visuals on my keychain so their always with me. We do a lot of games like "Red light, Green light", freeze dance to work on these concepts. She knows the signs as well. A lot of video modelling of street safety. Practice walking holding hands and not holding hands keeping a safe distance from mom. giving her a job to do, for instance at the grocery store pushing the cart, putting items in the cart, keeping her busy and engaged so she doesn't bolt. I'm on a wait list for a service dog and wish I would have gotten on one a few years ago. There's so much more but that's all I can think of for now.

We had our doubts about my nephew's level of consciousness when he was 5, and clearly the schools didn't know what to think about him either! I think 5 can be an especially young age for autistic kids, when many babyish characteristics persist much longer than expected. My nephew was 7 when he first took an interest in animals, just like he'd seen his big sister do. And, it doesn't seem fair to expect a 5 year old to be able to use an iPad....LOL. Can't we give auties until at least 8 or 9 for that? I can't remember but I'm pretty sure my nephew wouldn't have bee able to operate an iPad when he was 5 - but he can now!

Besides the reading and writing, where he is still years behind is w/social relationships. He's never had a friend, yet, but I know he will be able to one day. He's a very loving little guy and he's now very interested in other people, especially boys his age. And he's crazy about his auntie!

But yeah, he still wets the bed once in a while. :/ That's getting better though.