Think my 2 year old is autistic- any positive stories please?

[WhatIsLife24]

Apologies if there are loads of threads on this already.

My DS turned 2 in November. He still barely speaks any words but I’m more concerned about his lack of understanding. He doesn’t follow simple instructions but tbf it is very difficult to engage him as he doesn’t respond to his name so often it’s like I’m talking to myself! He doesn’t give eye contact often but will for a short time if for example he’s on my knee and we’re singing/playing etc. He does smile and in general is a very happy and affectionate boy. But a lot of red flags such as he likes to line up absolutely everything! A lot of repetitive behaviours, eg spins round in circles, sticks his fingers in his ears, and constantly climbing (excessively), doesn’t try and play with other children or play in general other than lining things up, and the odd word I have heard him say he sort of sings it and repeats the word 6/7 times. But then after a few weeks I never hear it again. He did have a handful of words shortly after he turned 1 but I’ve never heard them since. He does make sounds that don’t sound like anything but otherwise currently have not heard him say anything for about a month. I also feel like he’s regressing in other areas such as getting him dressed- he now doesn’t seem to understand to put his arms through his sleeves and I have to physically do this for him.

To me I feel this sounds very much like he’s autistic but just hoping for some positive stories about progress with anyone else’s children? And any advice. As I feel like I’m failing him currently as my gp says to go through HV as he’s under 3 but been trying to get an appointment since early December- they keep cancelling due to sickness and it’s still not been rearranged! I’m a single mum and he has no contact with his dad (another long story) so getting very worried about what life will be like for him when I’m not around (getting ahead of myself I know!)

Hello OP

It is so hard not to worry and you're doing the right thing seaking early support in case your child needs it, but do remember it is entirely possible that he may not.
Your little boy is getting everything he could possibly need from you at the moment, you are absolutely not failing him. Whether he is autistic or not the most important thing is that he is happy and feels secure and loved, and from your OP that is clearly the case.
My little boy is 4, obsessive climber, mostly ignores instructions (but can follow simple ones like 'put it in the bin' and has done since he was 2), very physically adept from early age but delayed with speech (some words but fewer than expected), very single minded, would occasionally line up toys, lots of eye contact and laughing, controlling with food since 2yrs (previously ate everything), puts hands over ears when worried/scared/told no.
He is the light of our lives and we all adore him. At his 2 year check I raised that his development was atypical in a number of areas, I spoke to the Health visitor again when he turned 3 and they arranged an additional development check. This additional check led to the Health visitor contacting the Community Paediatrician referencing possible autism, and a year later we had his first appointment with the Paediatrician. Paediatrician decided they would assess for autism when he turns 5 and for ADHD when he turns 6.
It does take a different kind of parenting compared to his brothers, but he surprises us every day and is mostly an absolute joy to be around. School start has been very tricky, he has lots of support in place and we do what we can to work with the school. He can count to 60 fairly consistently and is already starting to read simple 3 letter words (not bad considering he's an August baby so not even 4 and a half yet), but his mark making is at the level of a 2 year old and his speech is delayed by a good year/18 months.

Does your LO attend a childcare setting at all? Our nursery were really helpful with articulating how DC differed from his peers.

Keep contacting you HV service, say that you are concerned and ask if they can refer you to SALT (Speech and Language Therapy). I found my local Children's Centre helpful too if you're struggling to get through.

Good luck, there's lots of support and advice out there if you need it.

Sorry forgot to add, you might not read this as a positive story but for me it is. I've had 2 years of worrying and questioning my parenting even though he's my third, I've had annoying conversations with HV and 'helpful advice' from well-meaning people with no idea (if he climbs down from his high chair just keep putting him back - er, funnily enough we tried that for 5 months before accepting it wasn't changing his behaviour just ruining our mealtimes). Now I feel much more content, I've found support through SEND groups both local and online and have a better understanding of him (we find him so much easier now than he was at 2). I do understand you thinking ahead as I do the same (asking other mums have they experienced similar and did some of those challenges resolve themselves in time etc) but mostly I try to just focus on the child I have now, and to be honest he's awesome 🤩

Thank you for your reply. I have finally got a HV appointment in 4 weeks time where at the very least I will ask that they refer to SALT. I just want him to have the support if he needs it and I think he clearly does regardless of additional needs or not as he is very delayed. I also have a 10 month old and I can communicate better with him. The difference is very noticeable so I’m really hoping the HV actually listens to me. Although judging from your post it sounds like it’s a long road ahead, but like your LO he is still a joy to be around. I just want to help him communicate a bit better even if that can’t be done verbally.
He doesn’t attend nursery at the moment but I’m due to return to work in April so I need to sort one ASAP. I was hoping he could go to the one my eldest attended but after speaking to them they said he sounds like he would need 1:1 and they can’t facilitate that without additional funding which wouldn’t come without a diagnosis! So I’m stressing a bit at finding a suitable place now although surely nursery settings should be used to similar children! I am hoping that will bring him on once he’s settled somewhere

Hi OP, I’ve been through the same process as you seem to be starting. At the 2 year check, my LO social and language development came out as 8/9 months equivalent (not even pointing etc)

I’d seen a very old post here about ABA for autism and we started this with a local ABA consultants (found from the online register.)

Long story short, I have since learned that ABA is controversial to some, but it changed our lives and has decades of research behind it.

This book below is based on ABA principles and was probably the most useful introduction. Whether or not your LO has autism, it would do no harm to start the techniques in the book (lots second hand options for £7 ish):

“An Early Start for Your Child with Autism: Using Everyday Activities to Help Kids Connect, Communicate, and Learn
Book by Geraldine Dawson, Laurie A. Vismara, and Sally J. Rogers”

How did you get on with the HV @WhatIsLife24?

Thank you! I’ll look into that. Can I ask how your LO is doing?

Thanks OscarandLucinda

They are now at the “normal” (age appropriate) ranges for everything and at a mainstream school without any support. It probably took about 2 years (starting at age 2.5) to get there.
I found that book after 6 months or so into it and it was the most clear explanation for me and really accelerated the progress.

Very happy to give more details in a PM if it would help.

@CadyEastman it was very stressful! Lol but only due to his behaviour (excessive climbing) and bad timing as he was due a sleep. So he was just constantly climbing the whole time whilst my other LO was screaming as I’d had to wake him from his nap. So I was trying to juggle a crying baby and a toddler at the same time and the HV just looked at me like I’m incompetent but didn’t try and help in any way! Even when I was getting the baby undressed I was still running across the room to get him off her desk. She would just make very unhelpful comments like ‘what would happen if you asked him not to climb?’ Like I haven’t tried that for the past year. 🙄
Sorry I know that’s not what you’re asking, just wanted a rant!
Anyway she said she would refer him to speech and language and to the paediatrician but said it may get rejected as they usually like to try other things first such as hearing tests and something about activities with a nursery nurse to do at home with him for 3 months. So I just have to wait and see I guess. But hopefully things will get moving now either way

@OscarandLucinda thank you! That would be great. Just want to help bring him on in any way I can as I’m aware I may be waiting a while for referrals etc! And he won’t be starting nursery for another couple of months

@WhatIsLife24 hi lovely. I’m also in a similar situation and my son was born in October so almost identical ages. Did you want to connect ?

@ag12345 thanks. Yes that would nice to have someone to speak to who’s experiencing similar!

@WhatIsLife24 @ag12345 can I ask how your little ones are getting on now? Have you received any support?

@90baby hi, my son is on the pathway for
diagnosis but he is doing so well. He’s speaking in 3-4 word sentences but he doesn’t have a conversation yet but I believe it will come. I pay for speech and language for him and have just put a DLA claim in, in hope it will cover his therapy. His nursery are amazing and said that he has made so much progress. Everything is going in the right direction for my son. He has my full support in everything. I’m so proud of him :)

is there anything your particularly worrying about ?

Happy to share and talk about my little boy! DS is now 2 and a half, but didn't walk until 22 months. If I'm honest I knew he had ASD from when he was about 6 months old, he's always been delayed in his milestones and had little quirks which are now more noticeably stims. He is largely non verbal still but does communicate through pointing and hand leading. He also has some sensory issues which we navigate around. He recognises routines exceptionally well and thrives within them. He attends a standard nursery and plays with children no issue. Though he is different to other children his age he is beautiful. He lives for joy, is overall a very happy and well adjusted little boy, very affectionate, very sweet and very kind. The best advice I can give is to celebrate the child you have rather than commiserate the milestones they miss. We're not complacent about seeking out support for him, but equally this does not define our parenting. He is so much more than his SEN requirements, they all are ❤️

My eldest which is now 3.5 years old, has Autism, the points which made us really go for a Health Visit and also seek external help was the following:

• He did not respond to his name
• Hyper focus on things he was interested in, at the rough age of yours (he would focus on Cocomelon and forget the world)
• From age of 14-15 months he loved putting his toys in straight line and order
• He had a fascination of wheels more than the cars - now he plays with the cars
• He had delayed speech, and his words would be less than the 50 words by age 2 ( that the HV wanted)
• His eyes-hand coordination was slow
• He is a hyper child - very active and very smart
• He had a phase where when excited he would fumble his hands (which he grew out of) but still gets overly excited
• He used to tip toe when he started walking - a lot of it. Then he started walking just fine.
• There are times to date he does not know how to act around a lot of people (i.e birthdays) which can be overwhelming.
• I have noticed he analyses new people in his surroundings and has a very good character judgement - being the bubbly self if he trusts the person.
• He did not like to play with other children, wouldn’t even play with his brother, he like to play solo.

There is so much that I could go on. But we figured he might have Autism at 15 months old.

Thankfully, now that we know he has, we took him to portugal for a faster diagnosis, as we stood on the waiting list and still are for 2 years.

But now we are making changes: we talk to him and make sure he looks towards our mouth so he understand more complex words and increase vocabulary, teach him motor skills and also allow him to be the bubbly boy he is.

I have a mindset that, yes he has Autism and ARSA, Autism and ADHD. But that does not make him any less smart and the happy child he is. He is now such an affectionate child and a comedian.

so I would suggest to begin now and so that once starting nursery, you have a head start in informing the nursery and getting the necessary support from the get-go. Every March/April the Nursery to school transition closes for those children that may need support in school (like my boy who has Autism) so thankfully we were able to get him in nursery at the right time.

Just note that I also thought that I was failing him tremendously because I would even hear from family members how other children achieved milestones when he didn’t. Until I undestood that I am trying my best in finding him the support he needs, yes some milestones where not achieved when “needed” but he is still an amazing, intelligent and affectionate person. While at times family members would be sauing “poor boy” I went on to defend and said I do not want to hear such words, because he may have Autism, but his intelligence, personality and charisma surpasses the spectrum he was given.

so regardless if you find out if you child has or not, be the support - because you will realise he sees you as a role model, an anchor, safe haven and his world. You are here, because you care, and you will see how much this will translate into by how affectionate he will continue to be.