ASD Progression

5starpool

Hi All,

Some very general stuff here. My youngest (he will be 2 this month) is going through the process of assessment, seeing paediatrician, etc, so not looking for advice in that regard. I'm be amazed if the end of the process doesn't diagnose him as being on the ASD spectrum, but we're dealing with that as we do it, both public (even with long lists) and private also.

He has practically zero communication skills. No gestures (pointing, waving, clapping etc), has never mimicked us, no words or anything that could be construed as words. His only method of communication is taking us by the hand and basically throwing our hand at the telly/high chair/fridge/door or whatever he wants us to do something with. He is also not affectionate (although will happily lean into us or lie against us if he is tired) and doesn't seem interested in others besides a few close people like myself and my wife. He loves to climb, and be upside down, so lying with his head off the sofa or similar. He is generally content in his own world, no tantrums, sleeps well, doesn't seem averse to noise, likes colours and toys with lights,and is generally a good eater for now.

So that's the scene set, and now onto my main question. I'm sure the answer will be 'it depends' but I'd like to get some view of other peoples experiences who have older kids with ASD. I know things will change as he gets older, and every kid is different, but when (providing the diagnosis is confirmed) should we be able to tell roughly how severely he is affected?

• Do things like sensitivity to noise, lights, tastes etc generally develop later or would there likely be signs of them at this point?
• He occasionally does some hand flapping, but it could just be excitement and isn't very often. Again, is this something that would typically develop later only?
• On the non-verbal side, I'm aware that lots of ASD kids stay non verbal, but some will be able to communicate in other ways (flashcards, writing when older, etc). Is this a 'wait and see' thing given his age again, or does anyone have similar experiences to my current one and their kid was able to communicate effectively but in a non verbal way?

I know there is no 'typical' ASD experience, and I'm not sure if I'm looking for reassurance or what, but I can't find the answers to questions that I have at the moment, and due to work and other things, it's typically my wife that has attended the appointments to date and she wouldn't be asking as many questions as I'd inevitably have. We'll take things as they come, and assuming he needs help, try and get him what he needs, but it's hard to get any information along the lines of the above, possibly because it is impossible to answer at this point, but I still want to ask the questions.

Any help or recount of experiences appreciated. Thanks.

fits

https://www.boards.ie/discussion/2058216596/asd-progression

My boy doesn’t have autism but has an ID with a lot of common bahaviours with autism. He’s very social and affectionate but besides that a lot is similar. He would have started stimming behaviours as a young baby. I can’t remember him having any words at two but he did drag me around to get things. He is quite verbal now at four and speaks in sentences although pronunciation is hard to interpret at times.

id say you would have noticed sensitivity to noise etc by now. My fellow has improved in that regard as he has learned how to regulate.

anyway it’s probably not much help but the whole spectrum thing means they can be quite comfortable in one area eg external stimuli and less so in others like social communication.

Id set up appointments with OTs and SLTs to assess him and go ahead with treatment anyway. You don’t need a diagnosis to start on these things.

Gatling

Not all kids have the same adverse reactions to over stimulation such as sounds and lights being only 2 he's still quite young , with ASD some kids develop reaction to stimulations later on others don't at all , I've known kids to start school as more or less non verbal but develop verbally over several years , while again others might not ,

You doing the right things already you already noticed something wasn't right and started looking for answers and supports this is absolutely key going forward ,you will start to notice more as he develops with age ,some kids are great eaters others can't stand different textures or colours in foods , I've a child who can eat quite spicy foods including raw chili's and not flinch and tell us it's not spicy at but give them something gone cold or out of the fridge and we get very vocal gagging ,

manonboard

https://www.boards.ie/discussion/2058216596/asd-progression

I am on the spectrum so i hope its ok to share my experiences as content to your question. Sorry if you only want to hear from parents, understandable.

Sensitivity to stimulus can change, but generally gets better over time. If your child is not sensitive to noise now, its less likely it will get worse as it is to get better. We can develop better filtering and processing capacity as time passes and we gain more experience + soothing habits.

That being said. It can be VERY hard to tell if someone has a sensitivity to a stimulus as one of the common responses is to shut down and not respond so as to reduce any further stimulus through internal reaction. The best way ive noticed to verify things like that is to collate the environments or activities they tend to avoid and see if there is a common stimulus. Lots of people thought i avoid various situations due to people, or alcohol but largely its noise. I dislike skate boarding for the same reason, but people though it was because i would be nervous on a board. I like climbing because it is quiet and my internal movement provides enough focus point that my brain filters other stimulus. Its also fun to be different shapes and visuals from being upside down. Visuals work well for me, so simulating visuals im naturally attracted to.

I have no hand flapping behavior and never did. I don't have information on this experience.

I was tested many many times to see if i was deaf because i would not verbally respond or respond to verbal stimulus. I can override it now and you can barely tell i have difficulty with it. Up until the age of about 4-5 i had extreme non verbal skills. I could hear and i could speak, but i just lacked any motivation to do so because it was so subconsciously energy intensive that looking and observing were just far more calm internally. One thing that helped me break that as a child was my mother stopped allowing my brother of similar age to communicate for me. It forced a situation where i met my needs faster by speaking. Constantly being refined with help from mum when mis-pronouncing, but flexible enough to give me my toy and food quickly after a couple of attempts.

my verbal non responsiveness still continues without conscious effort. The best way i could describe it is Visuals are like right in the center of my attention and spark internal reactions quickly. Sound is like im in a deep cave hearing an echo from an entrance, where im sleepy and trying to force my internal laziness away to attach to it. Then it processes just like normal. Sunday morning alertness :D

I think you will find it frustrating because the internal experience is so unique that its impossible to give any comforting answers about what to expect and do. I hope you don't feel too helpless with it. The supportive stance you provide is the most important aspect to the care giving regardless of the Childs internal experiences. After dealing with obvious external supports that you wont miss, you will just go on a discovery journey together and as information becomes available, you will make compensations. Its easy to tell you will be the type that puts the work in and offers a great parental support to your kid.

JDD

Sorry to hijack the thread but Manonboard, you sound very very like my four year old son. We will be getting him assessed early in the new year, and he has had about six months of speech therapy so far. It's very comforting to me that you can communicate so well in a written format - I don't care what form my son eventually communicates in, just as long as he gets his needs and wants met.

My son stims a bit - spins around and likes being upside down. He is very obsessed with lights and contrasting darkness - streetlights, his nightlight under a blanket, the tv in a dark room. He is quite affectionate, can hold eye contact and can read facial expressions. However he doesn't have much social language, or conversational language, and finds it hard to make friends. Then again, I'm not sure it affects him that much.

What you talk about regarding aural stimulus sounds very like my son. Trying to engage him in conversation seems very much like he's coming up from the bottom of the sea. There can't be any other aural stimulus in the room - radio etc, and while he will eventually engage it will only be monosyllabic. I love this idea that it will just be journey of discovery for us. I worry so much that we are not getting the right supports for him, that he is lonely without friends, and that he will really struggle in school - and, well, in life really. I hope that I can be someone who can just go along for the ride with him.

5starpool

Thanks for the replies all, I had forgotten about this thread after a few days and I'm not on boards much these days at all.

Thanks especially @manonboard for sharing your lived experience.

As said by others, we'll try to get the supports and help that we can, but it seems like a difficult thing to get going with. Paediatrician at a visit last week said that she just recommends getting some genetic testing done and an MRI too. He has an assessment booked for early next year which if it leads to a diagnosis will be enough to get him in a special ECCE class next year which should help, but that's still 9+ months away so a lot can change between now and then i guess. We've said similar ourselves to what @JDD said about not really caring ultimately if he can speak as long as we can understand his needs, but I guess that'll all become apparent over time.

He's recently started jumping, which is age appropriate seemingly, so his physical development isn't delayed, just communication, play and the likes. He mostly uses toys as things to throw on the tiles to see what noise they make, Christmas tree baubles are a new favourite for that. We haven't noticed any noise/light sensitivities in him other than getting upset when his older brother is crying.

I know there is no silver bullet, but what I'd love is to be able to book a couple of hours a week or whatever it is with an appropriate therapist or qualified person(s) who could do the things that we don't know how to which may be able to gain insight into how we may be able to help him communicate such as using picture cards or the likes. We are reticent to start anything like that in case we do it wrong and it ultimately does more harm than good. I keep reading that early intervention is crucial, but finding something that isn't walled off behind needing an assessment or XYZ that takes 2 years to get is challenging. Perhaps we're looking in the wrong place though, or perhaps just over 2 is really too young for any of those services.

manonboard

https://www.boards.ie/discussion/comment/118262811#Comment_118262811

Hope its ok to reply. Im not too sure of the rules of hijacking. I just read your response now, I didn't get a notification so apologies for delay in acknowledgement.

I'm glad you had comfort from my writing of my experiences. Journey of discovery is definitely the way to view it. I was only talking to an ex of mine last night that is moving far away from her current partner. Everything is kind a a journey of discovery and together, both of them must figure out new ways of connection and building friendship. They will experience, then give feedback to each other and with a good attitude, they will view the difficult parts of things to journey through together. Views like that helped me a lot. Gave me a bit of patience to discover how my autism works. I had good friends eventually. Patient calm people who supported me. Makes a world of difference.

One thing that i don't see mentioned in many places but that was a huge effect on me was meditation. I think i actually started stimming with the feeling of it in my nose. It changed things for me alot after some years of practice. Reduced my overloads by making more capacity. Gave me a focus that was always available when needed. Helped me learn deep relaxation. From there, there was a lot more room to process. Feeling more connected to my own body helped me learn how it works and detect the unusual information processing that didn't make much sense. Eventually being able to rewire it.

Anyways, just wanted to mention it as its so very rarely mentioned in ASD as a support and yet it was widely beneficial to me.

https://www.boards.ie/discussion/comment/118321157#Comment_118321157

You sound like you will be an excellent supportive person in thier life. I have no doubts that they will feel very comforted by your presence. Its a very warm to see this, gave me a great feeling.