If your child showed signs of development delay/ASD as a toddler?

(12 Posts)
Nuttyaboutnutella Tue 16-Apr-19 20:52:55

I had some concerns recently regarding my son's development. He recently turned 2. Spoke to my HV who did a baseline assessment and he's scored behind on a few areas. She is now referring us to a paediatrician for further assessments. The main concerns are lack of speech and social interaction.

He's not really talking (only says mama), and absolutely hates baby/toddler groups.

Up until now, I guess I've been in denial but now I'm starting to wonder if he may have ASD.

I've been reading a little and he seems to have some of the indications of it.

My head is a mishmash at the moment, so I'll explain properly tomorrow. Such a stressful time as I'm also heavily pregnant. I'm going to make notes about the things I've noticed and update tomorrow.

In the meantime, has anyone got experience or words or advice with young children with developmental delay/ASD they can share? It's just hit me hard today to know my concerns might not be entirely unfounded. sad

OP’s posts: |
Nuttyaboutnutella Tue 16-Apr-19 22:08:15

Anyone?

OP’s posts: |
MamaAffrika Tue 16-Apr-19 22:20:32

Speech therapy can be really life changing, the sooner the better. I've taught several kids with ASD but have zero knowledge of toddler age. Just wanted to let you know that one of the loveliest boys I've ever taught was high functioning ASD and non verbal until the age of 4. By 10 years old he was performing well at school and socialising well.

Hi nutty, I’m sorry I’m not much help just wanted to say I’m in the same position and wanted to send you a hug as I know how you feel! My DS also just turned 2, completely non-verbal, has some of the markers for ASD, also has a hearing issue which we originally blamed all his speech/social delays on which has complicated things slightly - though it’s hit me recently that actually, I’m quite certain he is on the spectrum. He’s been referred for further assessments too by HV and paediatrician. I’m 24 weeks pregnant so bit of a stressful time anyway!

I’m sorry i don’t have any constructive advice but didn’t want to read and run, Mama’s update is reassuring in that the right referrals and assistance can really be a god send and hopefully our DC will flourish too with the right help. flowers just try to keep calm and and not get too stressed in your condition (I need to take my own advice!).

Hopefully you’ll get more constructive advice along soon smile

livpotter Wed 17-Apr-19 08:40:51

My ds is now 5 with ASD. He was developing 'normally' up until about 2. After 2 we started noticing that he was losing his speech and had stopped communicating (eye contact and pointing). This was all a bit of a confusing time because my dd has only just been born so we were in a bit of a daze anyway.

I found that time very challenging as we didn't know what was going on at all. My advice is to read lots, particularly books written by people with autism. 'The reason I jump' was my go to book. Also read up on sensory processing disorders 'the out of synch child' is a good place to start.

See if there are any local courses in your area to help with communication and behaviour. Makaton has been particularly useful for us in helping bring on language.

Mainly though, and this is something I learnt in hindsight, your child needs to be calm and happy In order to learn anything! We spent money on SALT sessions that were useless because ds wasn't in any kind of state to be able to learn.

Also something that also helps me on the more challenging days with ds is to remember that most of his behaviour is caused by anxiety.

Sorry but of a ramble, hope this isn't information overload. I remember how I felt when we first realised ds might have ASD and it was a very overwhelming time.

clandestinenetwork Wed 17-Apr-19 18:42:05

Hi OP. Firstly I've been where you are, and it's hard, so be kind to yourself. It's a worrying time.

I had concerns about DS from 18 months. He is now (just) 3 and has a formal diagnosis of ASD, severe speech delay and sensory issues.

I did as you did and started by going through my HV. DS was in the black areas on ASQs for everything apart from gross motor. When he started preschool aged two, the SENDCo called me in for a meeting after one term. Long story short, she referred him and we saw a Paediatrician about three months before he turned three. We had to apply for a referral twice; they often get rejected. You need a really strong case with lots of evidence for paeds to see you and waiting lists can be long. Be prepared to fight and then to wait for appointments. That is normal but frustrating.

We then had a second appointment, during which we discussed reports from preschool, speech and language therapist (preschool also referred for this) and my observations, plus the Paed's thoughts. She formally diagnosed him there and then without the need for further assessment, which was a relief.

I am now in the process of applying for his EHCP and finding him a specialist school / unit.

My only advice is that you're not alone, even though it feels so isolating. I have used these boards a lot for support, as well as contacts I have been given IRL. Some days are absolute shit, others are fine. Hope this is in some way useful - happy to answer other questions here or via PM. thanks

Chickenandegg8 Thu 18-Apr-19 08:53:49

Hi, I’m kind of going through the same thing but my lb is 10 months old.
I’ve had a private assessment through Dr Ruth G-O. She does feel my little boy has social and communication delay.
We’ve been given exercises (play therapy) to do with him to help with his development, I’d definitely recommend her. Early intervention can really really help.

MamaAffrika Fri 19-Apr-19 19:40:21

Chicken - what signs did you recognise at only 10 months old?

Chickenandegg8 Sat 20-Apr-19 08:51:41

His eye contact and name response were the main things.
He has great eye contact except when he’s playing with his toys then he becomes quite fixated and won’t really make eye contact at all. So if we throw him the ball he’ll pick it up and throw it back but won’t look at us.
He does respond to his name but not consistently.
He also doesn’t imitate very often.
My nephew has autism, he’s low functioning with severe learning disability so I’ve been keeping an eye on my little boy.
We’re doing a mix of pivotal response therapy and early start Denver model. Only been going 10 days but hopefully it will make a difference!

Stram Tue 23-Apr-19 12:32:10

I have been in your position - I realised that my DD (then aged 18 months) had ASD just as my (high maintenance, very vomity) DS was born. It was overwhelming. But 3.5 years on life is in a much much better place.

My suggestions would be:

1) Document the ways in which your child matches the diagnostic markers for autism (eg with ref to the US M-Chat etc) and other anecodotal behaviours (and also where things point the other way). I found this enormously helpful as it was somewhere to park/quantify my concerns and a very useful reference in discussions with professionals (we got a provisional diagnosis at 18 months from the NHS paediatrician who subsequently confirmed it through multi-disciplinary assessment 9 months later)

2) Find practical things you can do with your child - woven into normal life - to help their development. I was lucky and had professional guidance on this from a wonderful woman named Carolyn Gulleford. I found NHS resources overstretched and underwhelming and but it was enormously empowering to realise that I could help DD through eg simplifying my language, clarifying what I was asking of her, working (deliberately but playfully) on her motor skills etc etc. It also cemented our relationship because it gave us stuff to do together (whereas before we struggled with joint attention), we did it playfully and she responded so well that the rewards were visible very quickly (and I know my great good fortune in that)

3) If you can get any extra help at home - with the baby, the housework, meals etc - then that will help give you the bandwidth for all this extra stuff

3) Try not to catastrophise - I read too many bleak things on the internet and made myself almost ill with worry that my DD would struggle with everything - particularly as her ASD was so manifest so early. But this has not been the case - she toilet trained easily, learned to speak, became able to sleep somewhere that wasn’t home, rides a bike etc

4) Having a sibling has been wonderful for her (and vice versa) - I felt stretched to breaking point at the beginning but it turns out it was the best thing we could have done for her - and him

5) Life is immeasurably better than I imagined it could ever be at the time of first diagnosis. My DD’s social challenges and vulnerability etc will probably always make me sad - but I feel deeply blessed with her and DS, we have made family life work well, and had lots of fun together. I also feel that I have learned profound things about parenthood, love and hope (the latter inspired by the fact that there are many good people around who have stepped towards us one way or another...)

That is such a reassuring post @Stram, thank you for sharing. It’s lovely to hear your DC’s are both doing so well smile
I hope you don’t minding me asking a couple of questions please?
You mentioned getting help from a lady called Carolyn - is she a private speech therapist? Did you contact her after your daughters ASD diagnosis or before? We’re waiting for referrals and assessments for my DS who is 2, and they’re just taking forever. It’s worrying me a little as every month we’re waiting I feel like my little boy is just getting further behind and he’s starting to show signs of frustration at not being able to communicate.

Stram Tue 23-Apr-19 23:09:28

In your shoes, I definitely would not wait for diagnosis to start looking for ways to support your son’s development and in particular his speech and language. You have realised he needs help, and so giving it to him now can only be a good thing.

Carolyn Gulleford was recommended to me as she had helped a friend’s child. She is not a professional SALT but she is hugely experienced in working with children on the spectrum using a blend of techniques (from ABA, Floortime, elements of SALT, OT etc) to help with diverse aspects of their development but particularly communication. Her approach is holistic (cf separate SALT, OT, physio input which can all be very narrow and fail to consider the crossover or the complete child) and just made sense to me. And had a transformative effect on DD. (Carolyn can be found on Facebook).

Books can also guide you. There are some great and helpful posts in other current threads on similar topics (eg “Feeling overwhelmed. Please give stories of hope re ASD in toddler”) which also suggest specific books which might help.

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