Looking for advice and opinions on cousin's DS aged 3....sensory seeking and social interaction?

[NeoMaxiZoomDweebie]

DS is 3 years and 2 months. He spends a lot of time with us due to my cousin suffering from MH issues. She just isn't coping with anything and we're helping out.

He's been coming to me almost daily for 6 months now and I'm more and more concerned daily.

He is very echolalic and has no other speech apart from learned phrases...some of it is from tv and other bits are what you've just said to him...no waving or pointing...but he is sociable and loves my DC for games like jumping on the trampoline.

He seems to be unable to approach other DC in a "proper" way...I've been taking him to a Mothers and Toddlers recently and he has this way of pushing his face into other DCs faces and also putting his hands into their hair and kind of...twiddling his fingers very fast.

It's making me sad as he smiles and is pleased to see the DC but he can't read their reactions or something as he just keeps doing it and it's got to the stage where I have to constantly jump up to remove him from another child's hair.

He wont use a spoon but used his hands and no matter how hard I try, he just won't do it.

(I have googled ASD a LOT and am becoming more convinced he is on the spectrum...he's got poor eye contact and doesn't answer to his name. He also has the odd vacant moment though these seem to have become less lately.

He doesn't/cannot ask for anything...no "Where's Daddy?" or "Hello Neo!"

and is still in nappies...no sign of wanting to potty train and cousin doesn't want me to try as she's just not there in terms of supporting him at the moment.

He is excellent with numbers and can count to about 100...he also can name all letters of the alphabet....he loves being read to and playing on the computer and watches TV for hours id I'd let him. If I ask him what a certain picture in a book is, he will often tell me..."Train" he loves trains and cars. When he plays, he doesn't play if you know what I mean...he moves things around a lot and empties stuff out or bites things. Unless it's a computer!

I have managed to get his Dad to enroll him in preschool but he's not starting for a month....I suggested they get his ears checked but Dad has not made an appointment.

He's a good Dad but VERY stressed...abuot my cousin and about the DS...I think he's suspecting something is amiss with DS but stuicking his head int he sand about it.

[Ineedmorepatience]

Gosh neo what a difficult situation for you. In your post there are quite a few red flags for a spectrum type disorder but no one on here could diagnose him.

It is going to be really difficult for you to get his parents to get him assessed. Is there anyway you could talk to them about his development and try to encourage them to seek advice.

Has he been seen by a health visitor recently? He should have had a development check at 2.5 I think.
One way of maybe getting an assessment started is to get his parents to ask for a speech and language assessment to look at how he communicates. It might be less scary for them than to be thinking about Asd.

Hope some of that helps.
Good luck

[moosemama]

It's a difficult situation for you, but your cousin - and your dnephew are very lucky to have you.

It does sound like you are justified in being concerned and if it was your child I would advise going to the GP for referral to a developmental paediatrician so that they can do a proper assessment, rather than just looking into one possible diagnosis.

However, if your cousin and her dh/dp aren't ready to face the possibility that their ds may have SNs then there's not much you can do. Especially if you have already advised the very sensible course of getting his hearing checked and they've chosen not to do it.

The thing is, even if you know in your heart that your dc probably has SNs, it can take a long time to come around to a place where you can accept and deal with it. It's different for everyone, everyone handles it in their own way and some people react very badly to having it suggested to them by other people - even if they actually do suspect it themselves.

I suppose it really depends on the relationship you have with the parents as to whether or not you feel you can have an open discussion with them about it and they will be ready/able/willing to accept the possibility. Would it help if you offered to come with the Dad to any appointments do you think?

You sound like a lovely supportive cousin/friend.

[moosemama]

Ineed said something that I thought about, but forgot to put in my post.

A Health Visitor appointment/check-up might be a less frightening prospect for them and may well lead on to further assessment and support and you could possibly be there when they have the appointment as well.

[NeoMaxiZoomDweebie]

Thank you....he did have his check and didn't really do any of the tings the health visitor asked him to according to his Dad but that was it...he told me she never contacted him again or showed any concern.

I haven't directly said there seems to be an issue because it's not really my place...I'm not qualified and he doesn't seem interested in the hearing test suggestion.

My cousin isn't really interested much at all. She is a very bright woman but now she's deeply depressed and has been hospitalised once.

[NeoMaxiZoomDweebie]

I want to try and help him...how can I help him when he approaches other children clumsily?

[moosemama]

It sounds like a really hard situation to be in Neo - I don't envy you at all.

If you are looking for specific strategies you could try, it may be worth starting a new thread with something in the title saying you are looking for strategies to help a toddler develop appropriate social skills. You could link to this thread for the back-story, but I think you'd get more traffic if it was in the thread title.

[NeoMaxiZoomDweebie]

Thank you Moosemama...it is hard because I love him and feel so sad for him sometimes. I can see he is bright...that he needs intervention. I can't make them do it though.

I will start a new thread....shall I do it here?

[Ineedmorepatience]

Yes definitely do it here, there are lots of people around who will be able to give you ideas

[bialystockandbloom]

Have to say there are stark similarities with my ds at that age - the echolalia, lack of interaction, emptying/refilling things as 'play' - and I think you're right to be concerned.

It's very hard, as at that stage myself, I was in massive denial and would have resented 'interference' from a relative. But I think if you can find any way of getting things going with further investigations it would be the best thing. They are indeed lucky to have you around.

Btw my ds was diagnosed with ASD at the age of 3.6. He is now almost 6yo, at mainstream school, is great academically and socially, and is a lovely, funny, interactive, kind boy with friends, interests, and a joy to have most of the time.

[NeoMaxiZoomDweebie]

Is he bialystock? I worry about him socially more than anything...because in life, we all want to have decent relationhips with others don't we? And he seems keen with other DC but just doesn't know how...your little boy has friends does he now?

[NeoMaxiZoomDweebie]

Can I also ask, if he's similar...is ASD more likely than Aspergers? Are they different? Which is more severe if any?

[MerryCouthyMows]

Is emptying & refilling things anything I should be mentioning to the Multi-disciplinary team in May? I didn't think about that being unusual?

But DS3 empties his toy boxes (even his tiny cars basket), sits in it for a bit, then gets out, refills it, and then starts over. He can do that for ages, and always has done, since he could roll over.

Did I miss this as something that might be significant?

[bialystockandbloom]

Having the desire to play and interact is a brilliant place to start. Hopefully with the right support and intervention he can learn 'how'.

We have put in over two years of relatively intensive support to work on ds's skills in play and communication. He is not 'cured', and still has autism, but is somewhere where I never thought he'd be. Around the time pre-dx but when I knew he had asd, my biggest sadness was at the thought he could never join in, be part of things, be sitting in a corner staring at a piece of string or something. But it's nothing like that. Lots of other hurdles and difficulties (and sadness) but so much 'less worse' than I thought, iykwim.

[NeoMaxiZoomDweebie]

I understood it to be non-typical play Merry...repetetive and at the age of 3 something they should have more or less moved on from.

[NeoMaxiZoomDweebie]

Thank you Bialystock....because his Mum is unwell I feel such a responsibility towards him to get him seen by someone and get him some help...as that's not possible I feel I have to do it myself as much as possible.

What can I do though? I find myself trying to arrange things for him so it's easier...but things crop up that upset him or make him stand out more.

[Ineedmorepatience]

Yes merry it is repetetive play if he is doing it over and over again.

I know a small person with Asd who spends an aeful lot of time taking objects out of boxes and putting them back in.

neo If there is a language delay then Aspergers is unlikely to be diagnosed. Having said that under the new criteria they are only supposed to be using Asd now.

[bialystockandbloom]

x-posts. Ah, the million-dollar question!

Generally, ASD is most often given as an umbrella term. Asperger's has in fact been faded out as a diagnostic term. Basically because the 'spectrum' is so wide and varied, and it's not quite as simple as a linear mild-severe kind of spectrum. A person can have severe impairments in some ways but not in others, and even a person who might be thought to have 'mild' autism can have a difficulty that, even though perhaps isolated, might be debilitating in itself. It is also so hard to predict outcomes at a young age, so giving a specific 'place' on the spectrum is kind of meaningless.

HTH and hasn't confused you more

[bialystockandbloom]

Also to add - my ds didn't have a language delay (though at the age of 3 didn't use social language), but was still given a diagnosis of generic ASD.

[NeoMaxiZoomDweebie]

No that's clear thank you. It makes sense really to call it the same thing and accept that the spectrum is a wide one. Because people are different then no person with ASD is the same.

[bialystockandbloom]

Merry i would definitely mention that at the assessment. It's the kind of stereotypical, repetitive activity that can be common. My ds would also pour water from watering cans/buckets over and over again - in fact often over his head again and again and again. (God I'd forgotten about that until now!)

[NeoMaxiZoomDweebie]

what is social language please?

[Ineedmorepatience]

So was my Dd3 bialy and no language delay. She does have great difficulty with social communication though.

[Ineedmorepatience]

My Dd3 talks for hours about what she is interested in but has little interest in others interests.

She will change the topic of conversation to what she wants it to be. She once talked for 20 minutes about crisp flavours to one of Dd2's teenage friends

She also doesnt use social greetings very often, although she does occasionally say hello to one of the TA's from her school. I always have to say "say bye to xxxx" and then she will echo it.

[bialystockandbloom]

Well in my ds's case, he had a big vocabulary, and would have met milestones for putting words together, making sentences, etc, but you couldn't have the kind of two-way, back-and-forth conversations you can have with a nt (neurotypical) 3 year old.

eg my dd at the age of 2yo might have not have had the words to articulate fully, but you could have had a 'conversation' with her. Ds would have said "i want some juice" at that age but couldn't have answered you if you asked him what his name was. Does this make sense?

[bialystockandbloom]

She once talked for 20 minutes about crisp flavours to one of Dd2's teenage friends

Lol I bet the teenage friend was really patient too