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Toddler autism concerns - please help with your experiences

9 replies

BuStepper · 18/09/2024 16:10

I'm new here so hopefully posting in the right place, apologies for the long post. My DS is 26m and is waiting to be seen by paediatrics for possible ASD. Initially we thought it was his hearing and there is confirmed intermittent glue ear however there are some behaviours which are concerning me and his dad (DH). These are:
-Lack of response to us calling him (unless he wants something)
-poor eye contact (alot of the time though he does sometimes give some when he is relaxed/laughing/
-no proper speech (he has said a few words but no consistency or context)
-hand flapping/running up and down when he is excited/tired/not busy and some repetitive high pitched babbling sounds
-doesn't point

He does however:
-Seem interested in other children and will play along side them
-no sensory aversions
-sleep well for both naps and bedtime
-eat anything
-unphased by any change in routine
-does some role playing such as sweeping etc
-shares food with us
-takes us to what he wants
-very affectionate with the family

He was hospitalised with mastoiditis at age 10 months for 5 days and at 12-16 months he was extremely unwell/malnourished due to undiagnosed coeliac/lactose intolerance. We think this is when the issues started as he was on track developmentally until then.

The health visitor has suggested ASD or developmental delay but is unable to say. He is starting speech therapy soon which we hope he will engage with. Has anyone had any similar experiences and what was the outcome?

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Nosleepforthismum · 18/09/2024 19:41

Hi, I’m a bit further on than you as my DS has just turned 3 but a lot of what you’ve mentioned sounds familiar. The only thing my DS had was decent eye contact and he did eventually point (but we had to teach him).

My DS was also 5 weeks premature and also had a rubbish year between 1 and 2 where he caught every illness going and was hospitalised a number of times. His preschool, HV and private SALT have all been on the fence whether or not he has ASD. Like your son they also think he could just be a bit delayed as he doesn’t have a lot of the traits typically seen in autistic children.

If you can afford to pay privately for speech therapy I’d really recommend it. They give an initial assessment (which you can use to support a DLA claim which can in turn help pay for therapy) and then lots of tips to encourage engagement and joint attention. I’m not sure what it’s like on the NHS as I’m still waiting for that.

For my DS he has come on so much and I think he had around 5 words at just over 2 and it was only around six months ago that he said mummy for the first time! He’s going to preschool full time with some inclusion funding they applied for, he’s talking in 2-3 word sentences and has really taken to potty training better than anyone thought. Most importantly for me is that he’s starting to make friends and he absolutely loves going.

It’s scary when you first hear people talk about your child possibly being autistic. There’s a lot of unknowns at the beginning and my biggest fear was that my son wouldn’t speak and he’d struggle in every aspect of his life. Those fears have lessened every month as I see the progress he’s making. He’s still not where other kids his age are but I’m no longer as worried about him. He may always need some extra support but I feel he’s going to be generally fine in life.

I obviously don’t know whether your son is autistic (or mine for that matter!) but try not to worry. The vast majority of autistic kids do learn to communicate and there is so much more information and strategies to help kids in school than ever before. Your son sounds wonderful and he will progress on his own timeline or may catch up completely.

BuStepper · 18/09/2024 22:58

Thanks so much for your reply, that sounds like a really positive outcome and provides alot of encouragement. Either way I just want to be able to give him the support he needs. Luckily we are going private through my work insurance for SALT.

The unknown is definitively what has scared me the most, whether he will catch up and what level of support he might need and also maybe selfishly I feel a bit sad even though he is a very happy little boy!

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Injackane · 22/09/2024 18:06

Our DS is 24m, some similarities, had a hard start with slightly preterm birth, 3w in hospital with severe jaundice. All health trauma they go through leaves a mark on their development. Our son has SPD (sensory craving), and speech/communication delay, but (like your son), loves other kids, is not stuck on routine, engages ok.

Don’t think your son will be diagnosed with autism, as he has no social issues or repetitive behaviours. That’s my opinion. He obviously has speech delay, but well over half of kids with speech delays turn out to be normal kids.

My advice is to start private speech therapy. We have a session with our speech therapist once every 6w, and then we work with our son at home, following the tasks we are given. The results are quite good. Although he is still delayed, it is less than before. His eye contact has improved heaps, much closer to normal. Even crèche said eye contact is good. We also taught him to point. He is now occasionally joining two words , like “yellow car”, etc. He tells us when he wants something like “water” “open” (to open a box or bag of food”),… Your son can be taught all of that, too. We started the therapy when he was 14 months. At the time, everyone told us it was too early, but it paid off big time.

Another hint for you, while your son is learning things, pay attention to his learning curve. For example ,autistic kids would forget the words and have to re-learn them, they literally drop the words they just learnt, while normal kids would learn new things, have a plateau for a while, then learn more, then plateau, then learn more, etc. Our therapist, which is truly brilliant and respected in his profession, told us that. Also, keep on mind that some early ASD diagnosis are not correct, some medical studies show anything from 5%-20% misdiagnoses with kids under 4 years of age. The reason being is it is hard to assess the social component of development until that age.

Hope this helps.

BuStepper · 23/09/2024 09:00

Thank you for replying, I'll admit I did not really know about SPD but reading up about it now and alot sounds familiar!

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SaltedPotato · 28/09/2024 22:36

Jumping on here (and other threads) I feel so alone. It's a comfort to know it's not just my boy that's having issues as irl it is only him..
He's got an appointment with S&L in November on NHS. Hopefully it will help. I can deal with ASD it's the non verbal aspects that scare me

BuStepper · 30/09/2024 13:25

@SaltedPotato I have the same fears, the unknown is such an anxiety and hangs over you. It is quite difficult with my DS because although he has alot of the traits, there is no rigid behaviour or reliance on routine. This led me to being very hopeful that it was something minor however the HV said 'some children catch up and some like DS never learn to communicate verbally' which I admit left me in quite a sad place. The nursery also said they believe unless he does a bit of a 180 he will always need a 1 to 1 in school etc. Perhaps it was arrogance that made me think nothing like this would ever happen to my child and that's why the reality of it has hit so hard you also have many people preaching acceptance etc which of course is right, but that doesn't make you feel any less sad about the whole situation especially when you see friends children progressing x

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Goodkid · 30/09/2024 15:58

This is exactly my DS. He is 26month old. He was doing fine but he got hospitalized when he was 16 month and that slowed his progress a bit. He cant speak yet but makes an effort. Occasional hand flapping when we ignore him, biting to get attention. I just feel bad how much he has to work hard to convey what he wants.

SaltedPotato · 30/09/2024 18:17

My son used to point at birds and cars when out but doesn't now. Doesn't wave bye either. He has started greeting me or my husband when we come home from work though which is nice. Some eye contact but not what I would consider a normal amount. Sometimes I think he's trying to speak but other times he's just making vowel sounds. Definite sensory seeking. Some hand flapping. We just need to do what we can and love them.

BuStepper · 30/09/2024 19:10

Same here, he definitely has lost some skills but has gained others. We love him so much, I just find the uncertainty hard to deal with.

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