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Regressive autism? Can this really happen in this way?

8 replies

OhMarnie · 29/10/2022 20:07

My DD is 2 years 11 months. She is speech delayed and I have concerns about autism. This is going to be an absolute essay so thank you in advance if you read it all!

Bit of backstory: never had any concerns about her until she was 2.5. As a baby she was a good sleeper, good eater, crawled at 7/8 months, pointed at 10 months, walked at 12 months and her first words were around this time too. Incredibly sociable and confident, we always said she could ‘work a crowd’ and loved being in the thick of it. Good joint attention, always giving/showing and involving us in her play. Role play/pretend play was and still is her favourite type of play by far. No concerns from nursery, all progressing well including speech (this is around 18 months so still single words). I remember one of my NCT friends’ little boy running off to fetch the nappy bag when asked to and I thought “DD definitely wouldn’t do that” but I thought this was just due to her personality, I thought her general understanding seemed fine and I’d never ‘tested’ it as such. Not much contact with other children due to covid but nursery reported on her having lovely friendships/playing games with some of the slightly older girls, and she always absolutely loved seeing my niece who is a year older.

When she was 18 months she changed nurseries as I was due to go on maternity leave to have DS and her nursery (based near my work) would have been too far to drive to when I wasn’t working. Transition went well, on her first session they said she was very sociable and they could tell she’d been to nursery before, she didn’t want to leave! At the time due to covid parents had to queue up outside to pick up, and she used to wave and smile and say “bye!” to everyone in the queue. This was just her personality, she could be stroppy and grumpy for sure but she also loved people.

She was 22 months when DS was born and she wasn’t too fussed about him but didn’t hate him either and just sort of got on with it, didn’t seem upset at all. Over the next few months I noticed that although she was learning new single words all the time, she wasn’t putting sentences together. Her tantrums stepped up a gear too but then again she had just turned two. They weren’t concerned at her two year review so she didn’t get referred, so I guessed I shouldn’t be too concerned either and DH and I agreed to just wait and see. Around this time she got her report from nursery and they also noted her speech delay (she was talking a lot less at nursery than at home too) but were happy with her progress in other areas.

When she was around 2.5 I noticed she started to repeat little phrases to herself, mostly they seemed complete nonsense but sometimes they seemed to be from her TV programmes (although often changed slightly rather than verbatim). At first I thought it was cute but after some Googling everything mentioned echolalia and autism and it got my mind going into overdrive. Shortly after this I asked nursery how she was getting on and they said she preferred to be with the adults than the children and would only parallel play (they had not raised any concerns at all before this). I contacted the HV to ask her to refer us for speech therapy and mentioned nursery’s concerns too and HV did a Schedule of Growing Skills assessment confirming her delay in both speech and language (other areas were ok). She said she didn’t think it necessary to refer to a paed but that she’d put us on the waiting list for speech therapy and do a follow up assessment in a few months (this is next week).

In the meantime we contacted a private speech therapist who came to our house to do a session with DD. She noted that her understanding was behind which would be why her speech hadn’t developed further, I did mention my autism concerns but she was very confident this was not the case (I know SLTs cannot diagnose and she acknowledged this herself) due to her good social communication with DH and me. The therapist did note that DDs eye contact, although good with me and DH, was variable with her - but that when she simplified her language to the 2/3 word level DD responded positively and eye contact immediately increased. She felt that the social concerns at nursery/variable eye contact with strangers were due to her lack of understanding and made her wary of others.

I’m confused. On one hand but the Echolalia seems (according to Google!) to be a huge red flag (and she does do it a lot. She uses single words at home a lot to request things and point things out to us but the echolalia is frequent too), along with the parallel play. She also doesn’t always respond to my questions even when she is able to. She never used to ignore me. Also looking back, since around her second birthday she didn’t seem so interested in her cousin anymore. She got excited when I said she had arrived, but when she saw her she ran away and didn’t want to play. She’s been like this since. This has got me thinking about regressive autism - how is it that she’s now displaying potential ASD traits but never did in the past? Could she have this type of autism? I know that it is a real thing but I thought that these children would have always shown early delays in social communication, which I really think she never did (I don’t think I’m in denial!) maybe I’m looking back through rose tinted glasses but her personality seems so different now, she doesn’t seem as happy and it often seems like she’s not listening to me. She also used to love having books read to her (she still likes this occasionally) but these days she’s not so keen. I couldn’t even pinpoint when things changed, some time after her second birthday I think, but I guess it’s been gradual. Sometimes I wonder if the arrival of DS has affected her in some way, but she does love him (now…after ignoring him for a good few months!)

Sorry this is so long and thank you so much if you read until the end. I know no one on the internet can diagnose my child, I’m just looking for advice/experiences/any input really (and it also felt cathartic to get it all out! DH is supportive but doesn’t share my autism concerns)

OP posts:
SusiePevensie · 30/10/2022 07:30

Has her hearing been tested?

JA1518 · 30/10/2022 07:38

@SusiePevensie yes, sorry I should have mentioned that. She had an NHS audiology test and it was all fine

ahna68 · 08/11/2022 07:37

Hello@OhMarnie just wanted to share my experience of my DD1’s regression.

she was developing very much ‘normally’ (all the milestones like you say) and again, happy enough when DD2 arrived , even a few kisses and bringing toys etc. Seemed to adapt well to new nursery too. And then at around 20-22 months I noticed her language really stalling, and then shortly after gradually falling away until she wasn’t using words anymore. Like you there was also plenty of echoalia (and like you I went from finding it super cute / quirky to a worry about autism). Her interaction also fell away more and more and she didn’t want to be around DD2 or other kids, remained ok with me and DH. She also started doing more and more hand flapping, spinning, repetitive things. When I did the MCHAT online (have you done that?) she had a high risk score. Anyway, she is now 3.5 and still pending diagnosis but everyone in her care system agrees with a ‘working diagnosis’ of autism. For me, it became obvious quite quickly and the regression was quite dramatic - I think more so than you describe but of course it could vary.

on the other hand, DD2 (now 2) is very interactive , loads of joint attention etc. However I recently started worrying because of her one words not really progressing to 2, and also bc I noticed echoalia too. However the more I’ve googled the more I realise echoalia can be combined with ‘normal’ language development and doesn’t necessarily indicate anything. I must say I will continue to worry for a bit longer but I guess that’s more because of DD1 experience.

so I guess I’m saying that I fully understand your concerns , but it doesn’t sound like a severe regression (or at least not yet). Definitely get experts to give their view but maybe it will not be needed (maybe you’ve even had a more positive week after the post) :)

JA1518 · 08/11/2022 08:26

@ahna68 thanks so much for your reply! I definitely see some similarities to our experience, but some differences too - ours definitely wasn’t sudden and I only really noticed anything in hindsight. She didn’t lose any language. So was your DD completely ‘typical’ before the regression? Nothing at all you can even pinpoint looking back? It’s strange isn’t it, everything I’ve read seems to suggest that there will be early deficits in all children with autism but perhaps they just go unnoticed initially. But I really really don’t think there were any with my DD.
We had her follow up SOGS assessment with the HV yesterday and the HV did the MCHAT on her (asking us the questions) and I don’t know her score but the HV said she ‘did well’ 🤷‍♀️ she’s phoning me today to talk it through and talk about next steps i.e. whether a paediatrician referral is needed.
How does your DD cope day to day? Do you feel she’s regained the skills that she lost? Sending 💐to you, it must be so difficult especially to see such a dramatic regression and feel so out of control 😞 you sound really on the ball though so she’s very lucky to have you as a mummy.
thanks again for responding I really appreciate it!

OhMarnie · 08/11/2022 08:27

@ahna68 that post above is me by the way! Forgot I had a new username!

OP posts:
ahna68 · 08/11/2022 09:09

That sounds like you had a good appointment, good that your concerns were heard even if it isn't anything

Yes I know a lot of the literature thinks that regression is overstated and more often the parents didnt spot signs that were already there. It's hard to say - I really didn't notice anything, but she was our first DC so there's that too. We are also fairly introvert by nature so probably weren't surprised by her playing alone a little more than the next child, etc. The only thing I do think in hindsight is that although she pointed, she never pointed loads. Definitely less than DD2 on that.

Sadly she's not regained the skills, she's very much in her own bubble. Some progress on interaction but very much small steps - no communicatino really yet and she's now in the special needs nursery system and going to be going to a SEN school. There are daily challenges with it all and I'm still probably in the acceptance phase - regression was something I found so hard and that's probably why I'm terrified of it again wtih DD2 and probably (hopefully) worrying unnecessarily!

Mum0i754437 · 20/12/2022 19:26

I hate the way regressions are talked about by professionals. There are cases where there are clear signs. Yes. But that isn't the case with many kids. Why do professionals always have to tell us...'oh they were there but you didn't notice'....no they were not there. What you are calling 'signs' in early babyhood are things lots of babies will have. My husbands nefu wouldn't sit up for ages. He looked wobbly even til 11 months. And when he did finally sit, he would lean forward so much. Still wouldnt hold his bottle til he was 9 months. He would shake his head left+right constantly. This all pretty much stopped by his first birthday. Turning 2 now and is a trooper! Talking, walking, very independent and understands everything. Plays a lot and has great social skills.
You will find something in each baby if you look that hard. But no, lots that went on to have extreme regressions really didn't have signs. Sat up, crawled, walked, even talked, on time. And then bang a big regression. I feel the professionals can be really condescending. Im sure they're sick and tired of the conspiracies but that doesn't mean they have the right to assume anything about us and what we witnessed in our babies before these god damn regressions.

Firstimemum24 · 20/12/2024 17:41

OhMarnie · 08/11/2022 08:27

@ahna68 that post above is me by the way! Forgot I had a new username!

Hi any updates please

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