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(Most likely) Autism Questions (26 months)

4 replies

LadyRenoir · 05/05/2020 19:05

I have an almost 2,5 yeah old DS.
To give a bit of context, he was born slightly premature and for the first few months suffered from bad reflux, so we were a bit used to the fact that a lot of things like gross motor movement were delayed- rolling, sitting, walking.
At 2 year old review we noted his speech was quite delayed, but we suspected it would be the case as up until that point we used two languages at home and bilingual kids tend to be behind and catch up later.
A few weeks later his nursery KW told us that she was concerned as he was not responding to his nameand whether we had his hearing checked. At the time, it did not ring any bells. The hearing test came back clear.
Fast forward 4 months... We have spent the last however many weeks confined to our house, DS was ill for two weeks before lockdown so the locdown plus those two weeks we have been sitting at home with me heavily pregnant. I was exhausted, so he spent lots of time on the phone.
The other day on the phone MIL on Skype noted how DS never maintains eye contact when around other people. We dont really have any friends with kids, so it's not something we noticed ourselves. I started googling, and ended up on NHS website about autism and literally froze- he ticks most of the boxes.

We have been observing him for the past few days and noted that:

  • he really rarely responds to his name (although in nursery whenever I came to pick him up would call him and he would come running- we have made many tests and most of the time he does not respond))
  • avoiding eye contact, sometimes when he is playing or sitting he will completely zone out and not pay any attention to us
-not smiling when we smile - which breaks my heart as he used to smile back at us in the most amazing way for months and months
  • even before he was playing more on his own alongside other kids, not with them
  • he has some vocab, mainly names of animals and he likes to randomly call them out of the context, so f.ex. he is walking around calling 'elephant', becaus ehe currently really likes elephants; he stopped using mummy and daddy :(
  • no sentences really, except one or two like 'open please' to take him out of his seat
  • he does not really play with toys except a few figures he likes to line up in different places, but he likes puzzles and started putting pieces in place
  • he used to be much better at following instructions, which I did in my mother tongue, now seems to pay much less attention and does his own thing, he shows understanding of - lets go to the kitchen/lingin room/upstairs, but wont bring any objects or pick them up. He used to pick up shoes etc, no longer does it.

It almost feels like he sort of regressed over the past months, he used to do lots of songs and gestures, now stopped most of these.
In terms of pointing, he does not do much, but we have some picture books and he can identify and call out most animals in them, and if he sees some of them on the tv will call out and turn around to get our attention to check.
I actually cant say much about imaginative play, he uses remote control as a phone and in the past offered me tea from a little plastic cup and 'fed' his fav sheep cereal, but we have been crap at modelling anything with him, so I feel very guilty about that.

What made things worse are weeks in confinement of our house and the fact we have just had a new baby. It's like he is regressing. No longer doing things he used to and some of the markers of autism are getting worse (he used to respond to his name when we were around the park, now just runs ahead:/). Massive change since we brought his baby sis home as well, it's like he is in much worse mood and uncooperative to do whatever. He also only two weeks ago got moved into his own room (long story, but we coslept until then), so another big change he may not be copying well, although he has been sleeping well.

No sensory issues as far as we can tell.

He guides our hand if he wants us to go somewhere or take him somewhere.

I am very upset, as with the current situation there will be no assessment happening anytime soon (I know the queues are months/years long anyways, but we won't even be seen by GP to get a referral for anything, we rang them and they said they are not taking anyone in and that at any rate all appointments ar ebooked up until end of June), plus there will be a backlog of people waiting because of COVID. Considering a private assessment, but again nothing will happen on the next weeks/months because of lockdown. Also guilty, as some of the things (not responding to name) we counted as the terrible twos and bad moods instead of getting things going a bit earlier.

I suppose what I would love to ask is what would people suggest we could do at home for the time being that would be helpful? Any games/books/websites we could explore to help increase communication, or model certain behaviours? We ordered some PECS cards, trying to see if they will work or maybe too advanced for him?

OP posts:
openupmyeagereyes · 05/05/2020 20:24

I would definitely recommend the Hanen book More than words to help develop communication, verbal and otherwise. As he’s quite young and you are stuck at home I’d also recommend the book An early start for your child with autism as this is all about using everyday life to develop communication and other skills in your child. Whether he is autistic or not, these will be beneficial.

A good technique to look up is intensive interaction. This is a way of playing with your child, using their interests, to help them develop and to improve the bond between you.

I think there are some red flags here but it’s for a specialist to confirm what they all mean, if anything. I would continue to add to your list so you have something comprehensive to take to your GP when you are able to see them. I’d also look into whether your area does speech and language drop in clinics as these can be a good route to be seen - it’s what I did with my ds when he was 3.5.

My ds lost a few skills when he was younger but they came back in time. He learned to wave when he was 8-9 months, did it for a weekend and then not again until he was two. These things are not necessarily gone for good.

You have a new baby so try not to worry too much right now. He’s very young so give yourself a break and do what you can.

LadyRenoir · 07/05/2020 08:13

Thank you, will have a look into these.

The thing that really has shaken us is how intensive some of the things became when we got the baby in. Some of the behaviours became so intense- we were talking with my DP how we could have missed them before, but to be honest, it just was not the case they were there! The lining up animals became obsessive in the recent days, it's so hard to get him engaged in anything else, he only used to do it sporadically before. He used to come and cuddle us until I went to hospital, now he mainly ignores both me and DP, which is so so hard as we used to have such a strong bond and lots of cuddles and kisses all the time. From a happy baby in a week he became so distant and detached, it's heartbreaking and we have nowhere to turn to to talk about it...

OP posts:
openupmyeagereyes · 07/05/2020 08:49

Having a new sibling can be a difficult time for many children so it’s not surprising that these behaviours are becoming more pronounced. Also the ongoing impact of lockdown on previous routines.

Look up ways to deal with the introduction of a sibling and ongoing issues. Lots of good resources for this - AHA parenting website, calmer easier happier parenting/boys, how to talk so little kids will listen may have a section. Getting enough 1:1 time with both parents is really important.

The other thing is that these periods can ebb and flow. It doesn’t necessarily mean a permanent regression. My ds has periods where he wants to do his own thing and periods where he doesn’t. Days where he engages more than others. Sometimes when they are more withdrawn it’s because they are figuring something out. You may find new skills or better speech come out of it.

The main thing is to not give up trying to engage with him. Have a look at some of the videos on the Nurturing Neurodiversity YouTube channel. There are some great resources there for how to interact and help development as well as to help you with worrying about whether he’s autistic or not Flowers

Sairamma · 15/10/2022 14:36

@LadyRenoir how did you get on later? Just wanted to hear. Worried about similar situation.

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