Published on 12, July, 2020
hi everyone, first post so looking some much needed advice (and encouragement).
We have a lovely 18month old son who (we think) is displaying some worrying traits. He was a 4lb premature baby but didnt need any special care and thrived. He walked early and started babbling early. He sleeps great and eats near enough anything. He started saying mama and dad at about 13 months. Other small words followed like banana, light, apple etc. The last couple of months we have noticed he doesnt talk as much but still says the odd word (ball, dad etc). He climbs and is very active - loves going for walks. He doesnt really interact with other kids, he would smile at them sometimes but isnt interested in playing with them. He is an only child. He will only play with toys a bit (cars, ball). The worrying things he dors is he rolls everything between his hands (from an early age) but we didnt think much of this. Recently he has started looking out the sides of his eyes a few times a day (usually when hes tired). occasionally he would flick his fingers too. He does give eye contact and smiles a lot at us. He can point when he wants something. When I google things it has worried me sick that his development is slow and he should be talking more. we brought him to the GP who was pretty useless - no real interest in talking about what milestones he has hit "he is still a baby, come back in 6 months if you're still worried". We also visited our HV who says his general health is great but he should be saying more words. She has referred him for an assessment. Being the impatient person i am I have enquired about private assessments and a private diagnosis as I have read not to leave it until 3 or 4 for a diagnosis and help, intervention is needed now if something is wrong. We have previous bad experience with fertility with the NHS and their "just wait it will be fine" attitude.
We are breaking our hearts that our little boy might be affected but of course he will be loved the same. We just want the best for him. Would really appreciate any advice.
Hi
I very much appreciate that you are deeply worried about your little boy, love him very much and want the best for him. I also know that you don't yet know that much about autism. But talking about autism as 'something wrong' is not respectful of autistic people. There is nothing wrong with us and we were all once autistic children and have grown up to live good and worthwhile lives.
Whatever you read on the internet please don't think that if your son is autistic its a dreadful and awful thing. I'm not saying it won't require a great deal of adjustment and effort from you to see the world as your son sees it. Please don't think of your son as having anything wrong with him, he is just different and respecting and honouring that difference is the greatest gift you can give him.
My son has serious issues with sensory integration and never looked out of the side of his eyes? The only advice I would give any parent [if asked] is be guided by your gut feeling and if you think you are right stick to it. I believe parents know when something isn't quite right, and really you are only looking for reassurance. My personal experience with Gp.s was a disaster, terrible lack of insight and knowledge. I personally would get both private and nhs feedback,
Good Luck.
Thank you very much for taking the time to reply, it is very helpful just to hear other peoples experiences. What is really worrying is the looking out the side of his eyes occassionally, this is a new thing and why would he be doing it? Dr Google is full of stories that this is the start of autism regression and his sensory integration is not working properly.
Can anyone on here advise on going private or having intensive ABA at home?
Hi,
I realise this is easier said than done, but I wouldn't worry hugely about the amount of words being spoken at this point. Your son is still very young, and sounds as though he has developed well so far. The thing that stands out to me in your post, going by what I've read, is your son starting to say less things. Could just be a phase, but could indicate something which obviously needs to be looked into by the right professionals. I feel that most professionals seem reluctant to assess for ASD, especially when very young. It took me years of pushing to get an assessment for my son, he was diagnosed at 12 years old. What they usually do (or at least going from personal experience with my two youngest children who are 2 & 3) is refer to speech & language and go from there. Is this what your HV has done? It can take a little while to get an appointment, so it may be worth looking into a private assessment if you can.
Advice will vary between professionals. My youngest son is three and didn't really start saying anything properly until he was two. Our GP has never said anything about it, although by other professionals we were told that going 'by the book' he should be saying a lot more by then, but that they would give him time if we felt he was progressing, but not to leave it later than three and a half. In contrast, my youngest daughter who's just turned two, she has very little in her vocabulary (ball, seesaw, apple), we took her to see a GP for an unrelated thing and they wanted to refer her to speech & language straight away. We were ok with that as we feel she's slower to speak than our son has been. They both show a few signs that could possibly indicate ASD, but I haven't wanted to jump the gun and assume too much. My youngest son says new things each day, literally, but has now also been referred because he's still not saying as much as he should be, again 'by the book'. I know at least two toddlers the same age (3) who don't speak at all, but show no other signs and there aren't any real concerns from professionals. They're both developing normally aside from speech, and I get the impress ion the general feeling is that they will develop this in their own time.
I think that's where the difficulty lies. Children develop at very different rates and with different things. It's hard as parents to know what to do, when to ask for a referral etc. because you don't want to read too much into what may be perfectly normal for them, or brush anything under the table either. I think if your gut instinct is telling you your little one is having difficulties and you think he needs to be assessed, then push for it and don't be fobbed off by anyone. Don't be put off, or made to feel like you're being over the top or anything like that because this is your child and you have every right to demand care from the people who are supposed to provide it, if you feel something is wrong.
I'm sorry, I have rambled on and not been very helpful. I suppose what I'm trying to say is don't give up and push for help and also that sometimes things don't necessarily mean there's a problem, could just be your little one will develop his speech in his own time, but you're right to ask for help. It's good to be cautious I think.