Thinking 13 month old has regressive autism

[ButtonsMama19]

Hi please help.

My 13 month old boy has shown signs of speech regression, and other worrying signs.

He said mama at 9 months... continued with it to 12 months but no other words, a bit of bababa and wawawa but nothing else. Over the last few weeks he’s stopped saying mama and gone back to shrieking and blowing raspberry’s, it’s like he’s 8 months again. He’s also stopped waving. He only did this for a short time but it’s stopped altogether. He has never pointed. He does clap in response to me clapping and when he sees someone he’s happy to see, and sometimes when I say ‘good boy’. There’s no other gestures like nodding head etc.
I was worried about him having no development in language but now he’s gone backwards.

He never responds to his name but I don’t know if that’s new or not, I never really noticed.
He does look round when he hears music from his tv show he likes, or if I say ‘no’ he stops and sometimes looks. So I don’t think it’s hearing.

He initiates peekaboo and chase me - crawling. He can not walk yet.

He pulls books anc toys from a shelf to play alone, if I join him he will interact, sit on my lap, but he won’t bring things to me himself.

He does do some imitation play. He has a kitchen and likes it if he puts a cup to my mouth and I pretend to drink.

He eats and sleeps very well.

HV came out today and although has made pead referral and said he’s not hitting target and has developmental delays but basically seemed to dismiss the regression side of it as he only lost 1 word.... but that was 100% of his speech!

I feel like it’s massive red flags for autism and she’s dismissed that as ‘far too soon’.

I feel really stuck. He doesn’t babble only shreik to get responses now and I spend hours each day babbling and talking to him and get nothing repeated. But if I blow a raspberry he does it straight back.

Eye contact is fairly good. He smiles if I do something funny, but not just if I smile at him anymore (he did at 6-9 months)

Please please reply and help me my head is spinning.

(For info, no history of asd, English only speaking household. )

Sending hugs to you. My twins both regressed significantly before they were diagnosed with autism. One very suddenly - a month after he started walking, at about 18 months he stopped saying any words, responding to his name, playing with toys, copying (he used to copy if I clapped, said the few words he had, blew raspberries etc and he did all that quite young - he was also an expert with a complex shape sorter but suddenly wouldn’t touch a toy). The other regressed much more slowly and mainly in social skills - he gradually stopped paying any attention, making eye contact etc and it took quite a while for us to notice so he was diagnosed a few months later than his twin.

You are absolutely right to get a referral - Autism is not the only thing that can cause regression so they will want to investigate other potential causes (we had chromosome array and fragile X tests, some metabolic tests and an MRI). You will have lots of people tell you that this happened to their child and now they’re at university etc which is great, but that’s not always the case and the earlier you can pick up on potential issues the better.

Their gross motor skills never regressed but when we were assessed we discovered there were some typical developmental things they had never done, which was only clear in hindsight.

When mine were young, the books An Early Start For Your Child With Autism (will helps with strategies for increasing shared attention even if it’s not Autism) and More Than Words (expensive bit worth every penny to support language development, receptive and expressive) helped me massively. The earlier you can get on this, the better.

They are now 4 and have just recently started at an ASD specialist school in the early years department (after a long battle and tribunal). The change in them in a matter of weeks has been shocking. The right support at a young age is so important. If it turns out not to be anything then you’ve lost nothing, but if you can put some things in place now it could make a world of difference going forwards. Also look into whether your area has a portage service as you may be able to self refer for some help from them (developmental play therapy, basically)

Similar experience to @heydoggee. My DS was diagnosed at 5 with ASD and looking back it was obvious but not at the time as lots of well meaning people said he was normal, not to worry etc. It wasn't until he started mixing with mother/toddler groups that more clued up people picked up on it. It escalated from there with loads of different referrals.

@heydoggee I appreciate your honesty. It’s hard to hear but I honestly feel like there’s no other answer to all of the issues combined.
If it was just speech regression of one word, or just not responding, or just not pointing it would be different.
I have tried to be positive but I’m scared ghat the regression is happening now and I’m going to lose more of ‘him’. At the minute he’s still a lovely, smiling, baby who want his mama ... just who has lost the communication he had. What if he loses more as the weeks and months go on. I’m scared

I understand your fear, but he will always want his Mama, trust me.

And OP don't think you won't be delighted by your child if they are autistic, they bring you so much joy. Trust me.

This, and also I took my son to the GP when he was 17 months and told her I thought he had autism. That got the ball rolling and she made an appointment for him to see a Paediatrician. He was diagnosed at 2.5. I would make an appointment OP, I’m so grateful to that first GP I saw for taking me seriously.

My dc has autism and signs became more pronounced around that age. That said, developmental regression can happen in neurotypical children also. Just keep an eye on milestones, lack of pointing is a big one.

OK lovely, take a deep breath and step away from the internet.

I'm not going to say you're worrying needlessly, but I am going to say you're panicking needlessly.

1. you're on top of things which is great
2. your hv is really supportive
3. you want to explore a bit more and support your DS
4. your DS is still so, so young and there are other explanations for regression - like working on a new skill, teething, all sorts of things

The best advice I can give you - and the advice that I wish someone had given me is this. If you think your child is showing autistic traits, you don't have to wait for a diagnosis to treat them as if they're autistic. We waited 3 years for a dx and I could still weep when I think of all that wasted time...

So what you need to do is look up some stratagies and therapies and just start doing them. You don't have to wait to be given permission. The very best thing I used for pre-school was a programme called More than Words by Hanen. I did it as a class through my LA but you can buy the book and DVD yourself and just start using the strategies.

For example, things like waiting for a response, doing something like blowing bubbles to encourage pointing and shared attention, reducing your words so that DS doesn't need to decode as much, ways to help him play - all really simple, parental approaches that don't need a therapist.

In other words, I know you're sad and scared and worried, but that isn't going to help your DS. There's lots you can do today, right now, that will help him, whether he's autistic or not. None of these strategies will hurt a NT child, whatever the issue is, you can move forward and help.

@LonnyVonnyWilsonFrickett I was told about a book called it takes two to talk by Hannah.... do you have any knowledge of this one? I think it’s more general and non Austin delay focussed than the more than words. I’m
Not sure which to go for

There’s a child with autism in my husband’s family who’s autistic and it was clear before she was a year old. She was just so, so different to any other child of that age.

She would never look at anyone. Never responded to her name or anything said to her. She ignored everyone, it was like you weren’t even there. She’s 4 now and still does this. She doesn’t seem to “see” people.

There was no doubt there was something wrong and she was diagnosed at 2.

Your little boy sounds nothing like that at all. But, they’re all different and there’s different severity of autism, so like any parent, you just have to wait and see how things go.

I've only done More than Words, I think the difference is Two to Talk is aimed at speech delay rather than autism and speech delay. I don't think either would hurt. If there's a chance to join a group then I'd prioritise that one.

Sorry, my first line should have been there’s a child in my husband’s family with autism, didn’t mean to say “who’s autistic” as that was obviously inferred from what I said before!

I would try not to worry; or you’ll risk ruining his toddler years together and will look back with regrets.

There’s not much you can do at his age; so I would just try to relax and enjoy your time together.

More Than Words can be used whether a child is autistic or not - it’s about establishing where your child is at in terms of language (talking is only a fraction of that - understanding and communicating needs is much bigger) and giving strategies for that level. We went to some Two To Talk sessions but it’s aimed at 2 year olds, and didn’t really account for the social and communication issues specific to neurological disorders, so it wasn’t much help to us. Whereas I think More Than Words can help any child - some strategies may work for you and some not but I wish I’d had it much earlier.

I would look up Intensive Interaction and Objects of Reference as strategies you could start to use now. If your child mimics or copies you, introducing some makaton can be really helpful (not for us - no copying here). And even if they don’t copy, it doesn’t hurt - may aid his understanding of language which is key to using it himself. Intensive interaction (and hand over hand support for play) have been the most useful and effective things we have done.

I completely get that you’re scared of regression worsening - I had exactly the same fear. That didn’t happen with us and we were told it’s quite rare indeed - we did have a long period of plateau though when things weren’t changing. However, now they have the right support they are suddenly doing things that were unimaginable even a few months ago - DT1 didn’t make eye contact with us or pay attention to anyone for 18 months. Now he goes straight over to people, looks them in the eye, looks at people to share his excitement about things. If he is autistic, the fact that you’re starting on the road to assessment and support now is excellent.

What was the ‘right support?’

They have just started at an ASD specialist school with full time 1:1 support, staff who are trained in Autism, facilities and a curriculum designed for autism, on site SALT and OT (although they haven’t started sessions yet) etc. The difference it has made to my twins in just half a term is huge. Before that we had input from portage and very very few SALT appointments over the course of two years. Now they’ll have plans devised for them and implemented by the school day to day.

I had to take our local authority to tribunal to get them in there and that whole process took over a year. I imagine that if I’d gotten them in there earlier (they take children from 3) then they’d be much further along - I did my best at home but with two of them and their needs being so different it was a massive challenge.

Assuming for a second that your son is autistic which obviously may not be the case, this is why early assessment is so important and the earlier you find out and can take steps towards the right setting and help for them. I know this sounds crazy as your child is so little, but you may have 6-18 months waiting for a formal diagnosis (with older kids it’s usually longer but with younger children they often move more quickly), time waiting to get to the top of the SALT waiting list, possibly a year or more sorting out an EHCP and possible appeal for a setting etc. You can see how the time quickly clocks up which is frustrating when clinicians bang on about the importance of early intervention.

Having said all that, using intensive interaction and the strategies from the books I mentioned upthread definitely helped them to make progress - just not as much as they are making with the more intensive support of the right school. One of my twins is very bright I think but so delayed with language that it’s a real barrier for him - but his social skills have leapt on in the right setting so he’s paying more attention to our faces, listening more and starting to understand words. Anything you can do to maximise interaction with people will help, whether he’s autistic or not as this is the basis of developing language. They do something and it causes you to do something - they notice and do it again, that’s an early conversation. If he doesn’t pay much attention to what you’re doing, intensive interaction says you flip it and copy what he’s doing - if he’s banging blocks together, you bang blocks together. He may not notice at first but keep going - eventually he will. Then you pause and see if he looks at your hands or at you waiting for you to continue. You keep going this way until it’s reciprocal - you copy him, he copies you etc etc. That’s the basics anyway!

Obviously I’m getting way ahead of things here and you might find there’s some other cause of the lost words or they’ll suddenly come back. But everything I’ve mentioned can be tried regardless - if things suddenly improve then you haven’t lost anything :)

@ButtonsMama19

Hi please help.

My 13 month old boy has shown signs of speech regression, and other worrying signs.

He said mama at 9 months... continued with it to 12 months but no other words, a bit of bababa and wawawa but nothing else. Over the last few weeks he’s stopped saying mama and gone back to shrieking and blowing raspberry’s, it’s like he’s 8 months again. He’s also stopped waving. He only did this for a short time but it’s stopped altogether. He has never pointed. He does clap in response to me clapping and when he sees someone he’s happy to see, and sometimes when I say ‘good boy’. There’s no other gestures like nodding head etc.
I was worried about him having no development in language but now he’s gone backwards.

He never responds to his name but I don’t know if that’s new or not, I never really noticed.
He does look round when he hears music from his tv show he likes, or if I say ‘no’ he stops and sometimes looks. So I don’t think it’s hearing.

He initiates peekaboo and chase me - crawling. He can not walk yet.

He pulls books anc toys from a shelf to play alone, if I join him he will interact, sit on my lap, but he won’t bring things to me himself.

He does do some imitation play. He has a kitchen and likes it if he puts a cup to my mouth and I pretend to drink.

He eats and sleeps very well.

HV came out today and although has made pead referral and said he’s not hitting target and has developmental delays but basically seemed to dismiss the regression side of it as he only lost 1 word.... but that was 100% of his speech!

I feel like it’s massive red flags for autism and she’s dismissed that as ‘far too soon’.

I feel really stuck. He doesn’t babble only shreik to get responses now and I spend hours each day babbling and talking to him and get nothing repeated. But if I blow a raspberry he does it straight back.

Eye contact is fairly good. He smiles if I do something funny, but not just if I smile at him anymore (he did at 6-9 months)

Please please reply and help me my head is spinning.

(For info, no history of asd, English only speaking household. )

Hi!! I thought I'd just jump on this thread to speak about my experiences, I have to agree with a few of the below comments, I think 13m is way to soon to be diagnosed, however parents know best, my son is currently 2 and a half and has no vocabulary at all, he's walking fine but cannot wake, does not do imaginative play, cannot colour or draw or hold a pencil, and is still drinking out of bottles, he's still in his cot also as I cannot physically train him to stay in bed when there's such a bad communication barrier, 13m is to soon for a diagnosis as similar the HV, it could very well be delay, and I was told I couldn't even get the referral until he has reached 2 years and 3 months (UK) so I'm just starting what has already been a long and upsetting process for him. Be patient, and my most important thing I would say is make as much time out for you as you can, my sons development age is that of a 9 month old, and he's 2 years and 6 months old, please don't ever feel alone though as it can be overwhelming!! I'm a young mom and had to figure things out really fast, so despite my age, I have been and am going through this with my son currently xx

I just read Charlotte's post above and I could have written almost exactly the same things about ds nearly 6 years ago. He did get an asd diagnosis at just turned 3 but seems to have very few delays/differences when I compare him to NT children now. He talks well, plays well, is fun and imaginative,is well behaved and very loving.

We did a lot with him from about 20months onwards (as otherposters said he was very happy toplay on his own so we really had to push ourselves into hsi world). We did the "More than Words" course (Hannan) whihc was so useful, best thing ever and language took a massive leap immediately. It is also useful for a NT toddler I think who is slightly speech delayed. Do stuff now to aid his development but dont worry about any of it (easier said than done), it may be nothing, it may be asd but even if it is that doesn't have to be a bad thing.Just keep loving him, he is still yourlovelylittleboy and the future will be whatever it is.

He is your wee boy. Focus on lots of play with him, reading to him, talking to him. Lots of repetition. My asd boy was actually my easiest toddler and so affectionate. He is thriving in primary with 1:1. Whatever happens you will supper him and give him the best life

Thank you @gruffalo28 @Hankunamatata

So encouraging to hear your boys have made massive progress. I really needed to read that today.

Interesting that your little one responded well to the Hanen program. At what age did you start that? It’s on my list to buy and read. When did you son start to improve with the speech and comms? I know that’s like asking how long is a piece of string and every child is totally different, but I feel like once I accept its more a marathon than a sprint then it will be easier to stop trying to tick off milestones by age.

We are just trying to give him as much exposure to the things he loves doing. My initial reaction has been of panic rather than rationality, and when I look back at both our personalities people used to say we must have been wired differently to have had the dangerous careers (pre babies) and partook in the crazy action sports we did. Maybe there was something in that....! Who knows.

We just need to support him the best we can moving forward. Like you both said it isn’t a bad thing even if he does end up with an ASD diagnosis.

Also ds did an intensive salt programme especially for preschoolers with significant speech and language issues (we were lucky our nhs was trying it out). He went from having virtually no understandable words (processing issues where he missed the ends off all his words) - they said he would need to go to a unit for reception. To having speech good enough to go to mainstream reception class.

Whether or not your child turns out to be on the autism spectrum, remember it is just that. It is a massive range, and all children have development spikes and delays.
Other posters have generally given you good advice.

Autism is a complex 'thing' it covers communication with others, imaginative/repetitive behaviour & understanding, and may affect interaction/socialising with others.

Remember communication isn't through speech alone. Try to learn and use Makaton, can't remember is very similar to 'Baby Speak' communication e.g. the food, hello/bye signs.

Your child is young, keep watch (have chats with your HV or GP), but enjoy this special time. Even if your DC turns out to be on the spectrum, your early input & reactions will make a lot of the difference to their well-being & feelings of confidence; and yours to handle whatever comes.
Take care

@ButtonsMama19 How is your son doing now?

He’s absolutely come on leaps and bounds
He got into a nursery and on the speech and language waiting list but at around 18 months he just had an absolute explosion of language!! He was seen by speech and language last week and they said his speech is now ahead of his age! All the other ‘flags’ disappeared too over time x