Very early signs autism? What to do?

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My DS is just about to turn 7 months. I have been worried about his development since he was about 3 months. We took him to a paediatric neurologist when he was 3.5 months and she said he was fine, but I am still very worried that he may be displaying very early signs of autism, or other delay. I do realise that autism would never be diagnosed at this early age, but I have also read a lot about the benefits of early intervention and really feel that I want to do everything I can to help him. I love him so much and don't want to waste these early months while the brain is still growing.

The main areas of concern are:

• He doesn't respond to his name and it can be very difficult to get his attention.
• For a long time, he never looked at me while feeding. He does now look at me sometimes, and does reach up to my face, but has only done this for the last month or so and only does it sometimes.
• For a long time, I felt that he didn't 'recognise' me - eg. if DH got him up in the morning and brought him to me, he wouldn't even smile or look 'pleased' to see me. Now I feel that he does respond to me and DH differently from how he responds to other people (eg. bigger smiles), but I wouldn't say he displays particular affection for me or DH.
• He rolls in an unusual way - not in a corkscrew, but raising his head and using his legs to flip himself over. There is a study which was done in the 90s (Teitelbaum) which indicates that this could be a sign of autism.
• He does not imitate us ever.
• He does not make consonant sounds or babble.
• He is nowhere near sitting up.
• He has always been quite challenging to look after - cries a lot and does not like being put down very much, although he is a lot calmer now than he used to be.

Positives are:

• Sits well in highchair
• Eats solid textured food and finger food very well
• Can self-feed water from a sippy cup
• Smiles in response to us and strangers
• Laughs if we tickle him or do something funny!
• Alert and aware, loves looking around if I take him out in the pushchair
• Sleeps well (7-7 with a dream feed at 10)
• Coos, blows raspberries and makes 'aaaah' sounds

I would love to know what people thought, particularly if you have experience with autism, and also if anyone has any ideas about early intervention? We have an appointment with a doctor (not a consultant) at the community development clinic next week (GP referred us at my request although she said she wasn't worried) but I am guessing the doctor will just say it's too early to tell.

DS was dx at 2yr 3 months. We are behind the US because provision is based on dx so it is a misguided cost saving excercise. Additionally young children are the remit if the NHS until they are school age so it isn't a priority fir medics to go diagnosing until then.

So do you get ABA programmes through your health insurance in the US? I am always disappointed with the provision for ASD kids in the UK, but I assumed that most programmes were just too expensive & therefore only for very severely autisitc children. I've done some ABA exercises with DS, but only because I've researched them myself. I'm not even sure there are ABA programmes in the UK. I also used Montessori teaching techniques as these are similar in some ways.

whilst I would agree that 7 months is too young for a reliable opinion to be given (especially on the nhs!) I had concerns about my dd from around that age, possibly even a little younger.

like you, OP, it was mostly a gut feel that something was not right. I first went to the hv about her when she was just bang on 8 months old. she would give us eye contact, and she woudl smile at us. she certainly recognised us (dh and I) and would interact with us. but it was all limited, and not quite 'right'. she ate everything (as long as I fed her from a spoon, but this was not noted as a point of concern until she was over 2), slept like a dream (like your ds, 7-7, with a dream feed at 10), and was (as every single professional liked to point out to me, presumably to show me just how wrong I was in my feelings of 'not quite right') a lovely, content baby.

dd1 was dx'd aged 2.8, on the nhs (really quite rare at that age), having been in the system officially for nearly 2 years by that point (by that I mean seeing developmental paediatricians/SALTs/audiologists etc). it was a massive waste of those 2 years, as no intervention was given, I had no support etc.

it was only when I had dd2, and she hit the stages that dd1 should have hit, that I realised just how much I had been fobbed off. how on earth anyone with any proper contact with infants could have missed that dd1 was not developing typically still enrages me, tbh (I knew nothing about children/babies before I had my own - had rarely even held one, tbh). especially those hvs I saw when she was a baby, who all chanted 'ohhhh, isn't she beautiful?' and 'what a lovely baby' ad nauseam, while ignoring the clearly struggling infant in front of them.

of course, none of this means that your ds has ASD, or is not developing typically. but I just wanted to post to say - don't ignore your gut feel. it may well be that all you can do at this point is keep an eye on him yourself. but at least you are doing that. you know your baby best, and if for whatever reason, you feel that your interaction with him are not typical, then listen to your instincts.

Post - there are ABA providers in the UK, but for most pre-schoolers ABA si delivered thourgh home programmes.

there are also schools (dd1 is now attending her second ABA school), but it is a long hard fight to get into one, and get the LA to fund. and yes, for these reasons, it is usually only the most severely affected who go to schools.

I would these days class dd1 (when functioning well, and within an environment that is enabling for her) as almost moderately ASD. she was very definitely severe when dx'd. but she has progressed amazingly.

we started ABA when she was 3; she is now 7. it has worked well for her.

What kind of things was it that gave you concerns silverfrog?

ooh, blimey, now you're asking.

I'd have to look back at her red book to be absolutely sure of what I went to the hv about, but off the top of my head:

her babbling was there, but not very varied. no range of sounds, and there didn't seem to be any communicative attempts behind the babbling.

she was on the late side of normal for all milestones (rolling, sitting, grabbing/holding things, pincer grip etc) and just didn't seem to be quite right with any of these things. she did hit the milestones, but there was always a 'hmm, she is doing that, but ...' about them all.

she didn't really reach for things, or grasp them - cot toys/buggy toys/mobiles etc, no batting at them, no realisation really that she could even attempt to do this.

she slept a LOT. really, really a lot. as a baby, she would easily have a morning nap of an hour+, an afternoon nap of up to 3 hours, and then sleep 7-7 as well (I mean as an older baby - 8-12 months). it seemed as though she found everything too much, and was retreating into sleep.

as she got a bit older (again, the 8-12+ months range), she didn't play with anything, at all. no interest, no inverstigation. if I put rattle in her hand, for eg, she would hold ituntil her grip failed, then it dropped and she would not look for it. same with any toy. and then, if something did take her interest, she would play with it repeatedly, for far longer than her attention should hold. I remeber sitting with the hv for about 40 minutes once, when she was just over 12 months. she picked up and dropped a single brick for the whole time. no interest in us, what we were doing or saying. no need for our attention, just total focus on this one brick (a whole tub was available, which she ignored).

I know that a lot of these things are not that far off NT, at itmes, but it was the frequency and intensity of them that meant that something was wrong. the whole picture was more than that, iyswim?

That's interesting silverfrog - if I came across a baby doing the things yours did, the only thing that might concern me is the not playing/investigating, all the others seem within normal. But as a mother you knew something wasn't right. I guess that is why it is so hard to diagnose developmental issue early - because "within normal" is pretty wide and also quite subjective.

I've just started working with a 2.5 year old, and it was clear to me and my colleagues instantly that something wasn't right with him - I found it suprising that the HV hadn't picked up on anything before, even at developmental checks? Not even a SALT referral.

Mine slept loads too.

I think the key is 'yes he is doing that BUT'. I don't think it is any good assessing a baby at that age tbh, but I think there is huge benefit in assessing the mother. Not by suggesting she gets a referal to social services and a parenting course btw, but by listening, really listening.

Why did I get my referal to a developmental paed? Because the HVs were sick of me turning up every month from 6 months old with another neurotic worry about ds. It could be his eyes, skin, teeth. Truth is I had no idea what was wrong but I knew it was SOMETHING.

The HV wrote in her referal (I asked for a copy of it) that she had no concerns about the baby, just the mother, and told me that she was referring me simply to put my mind at rest so that I would stop turning up at the clinic.

I was overwhelmingly shocked when the paed asked me if I had considered autism and gave me a working diagnosis and various referrals plus an appointment for a multi-disciplinary assessment. It wasn't even mild autism. It was moderate-severe.

yes, Rita. I can completely see that many of the things fell 'within normal range' - but it is unusual for everything to be just on the border of normal range - speeh, physical development, reach, grasp, rolling, interest in anything - nothing was 'ok' iyswim? and that (to me) pointed to something else.

and as I said, it was more the frequency/intensity of the 'not normal' that was the problem, and that can be hard to get acorss in a hv appt too. but again, the fact that i was back,month after month (couldn't face it any more often), surely added up to something not being right?

but instead I faced repeated PND questionnaires (because my baby was such an easy baby - she ate, slept on cue (like clockwork), I had no hassle with her as such - that there must be something wrong with me to feel that there was osmething wrong with her, iyswim?), and was repeatedly told 'lots of mothers would envy you - they have trouble with sleep issues, and with weaning; you've had quite an easy ride, and isn't she lovely?' .

it was only when we moved areas, and we saw a new hv that dd1 got referred. it is incredibly hard to get your dc referred under 2, even when the problems are obvious. I faced 'oh, but that is normal for your dd' once it was becoming obviosu that ehr speech was not developing, and her coordination was not developing etc. because they had seen her for so long by then, that they were used to her ebing 'on the late side of normal' and advocated waiting that bit longer to see if she caught up, when with each month that passed it was clearer she would not catch up without intervention - and only then could the 'proper' process start, which then takes further months and years.

I totally get that all babies, at some point, are not going to play with toys, or are not interested in people, or don't hold eye contact, or don't investigate, or babble lots etc. but when al those things are the norm, and the typical behaviours are the exception, then surely some investigations shoudl be started?

DS2 has autism, he was diagnosed at 2yrs 6months. I knew from him being weeks old that there wasn't something quite "right" with his behaviour. He never cried when hungry or awake, we had to guess when he needed fed. He only cried when bathed, which he still does now at the age of 6. His developement was very delayed, he wouldn't hold anything in his hands until he was 15 months old, he didn't sit until he was 9 months old, crawled at 12 months and walked at 16 months (I think, give or take a few weeks). No speach until he was nearly 4, he didn't even babble. He also did very quirky/repetative things, like spin things, hand flapping, opening and closing things. He did make eye contact, but rather looked passed you than right at you.

Took me forever to get someone to listen to me. I got accused of comparing DS2 to DS1(who walked at 9 months) and my concerns brushed under the table.

7 months is too young to diagnose autism, but if you o have any concerns please do keep a diary of them and mention them after your DS turns one. The youngest they might consider to look into it is 18 months.

Your Ds does sound lovely though, and nothing is really jumping out to me, so please try not to worry and enjoy your DS.

I had concerns from 10 weeks about DD, who does have autism.

Looking back she was smiley but was far less interactive than other babies and was obsessed with looking at lights

The latest thinking on Autism has it as a composite condition, not an "monolith" set in stone condition. (see Royal Society lecture by Dr Happe)
Under this thinking it looks like you son might have one autism trait or possibly two (the strange turning over and the lack of eye contact).
You may wish to get a referral to a developmental paediatrician, but in this country the ability/will to spot autism early is virtually non existent (compared with America where they take any possible sign as likely and use ABA to counter the behaviour very early) and your GP may refuse to refer you.

If you feel his movement is strange it may also be worth tracking down an osteopath with experience of babies and children with difficulties, they will be able to tell if he has hypotonia or possible dysphraxia which are often co-morbid with Autism. This would help to get a referral to a developmental paediatrician.

Follow your instinct, and first think about asking a close friend for an honest opinion, it needs to be an observant friend. My DH was saying for 2 years that he felt there was something "not quite right" with our friend's child, and the child was later diagnosed AS. It was the way he held his head that DH kept saying was odd. He was right.

silverfrog - actually I don't think it's that unusual for a child to be at the slower end of normal across the board at, say, 12 months, but to have caught up by 3. Equally some children seem incredibly advanced at 2 but are bog standard by the time they're at school. But with your own child you have more of an insight than an HV will, so maybe could see that something wasn't right when HCPs couldn't.

I am thinking that DS3 hits several of SmallWhiteCat's red flags for autism.. but he doesn't have it. So even the red flag markers aren't definitive; it takes more than a checklist, I guess.

Rita - I would agree with you wrt typical milestones, eg sitting/crawling/cruising. but not when it comes to interest in surroundings, people, imitation (of anything at all) etc. if, by 12 months, it is impossible to describe your as child as 'ok' at a single thing (including the not-often included in baby development emails milestones of eye contact, imitation, awareness etc) then I think it merits closer watching, tbh. yes, some children may well grow out of it, but to leave those who will not until 3 is just wasting valuable intervention time.

Thank you very much for your thoughtful and helpful replies. Clearly things are very uncertain at this early stage. Some of the things people have mentioned do really ring a bell, and equally some do not.

The difference between the US and the UK approach is striking. I did see an article in the NY times about a new study by the University of California of early intervention for 'at risk' babies as young as 6 months.

Gloria, Silverfrog - do you know if you can get an ABA programme privately in the UK, and, if so, how? I took a look at the website of the ABA provider recommended by the National Autistic Society and it states that it is for '0-5' year olds but in order to apply you need a diagnosis. If you are unlikely to get a diagnosis before 2-3 at the earliest, it seems that the opportunity to make a difference during those early years is lost. Would any paediatricians diagnose privately earlier than 2-3? (Of course this is several leaps ahead of where I am with DS but I am just interested to know).

MrsDeVere - thanks for your perspective as someone who works with children with developmental delays. Yes, I do play and chat away to him all day. I do sometimes run out of things to do with him as he does not stay happy for very long at any one activity so I often end up just kind of pottering around the house holding him on my hip to keep him happy. Do you have any ideas of stimulating play that is particularly effective?

Rita - yes I do socialise with other Mums and babies (NCT group and other friends) - I try not to compare DS too much as I know every baby is different but it is hard sometimes when I see what, to me, are glaring differences. We do a music group as well, and are starting baby sensory classes soon. We tried swimming but he really didn't like it so we gave that up.

Thank you everyone else who posted - I really do appreciate you taking the time to share your experience of your DCs.

If you have a Children's Centre near you, maybe see if they do a PEEP group for babies. It's kind of a more structured early education group rather than just a playgroup.

Hi OP, I have no experience of ASD and if this is crap advice it'd be great if other posters could say so!

I just wonder if there is a good nursery with experienced staff near you that you could perhaps send DS to for a few hours a week? It would give you a break from constantly trying to think of things to do with him, nursery tends to involve lots of exciting activities for babies but mainly I wondered if you may find the opinions of the early years professionals useful, as surely they would pick up on anything atypical or cause for concern. I wouldn't say anything when you enrolled him but after three or four weeks ask his keyworker for a chat and outline your concerns, see if they have similar thoughts? I think they'd be less likely to "fob you off" than the HV as they would spend a lot more time with your DS and he would be there with other babies to compare.

I worried a bit about my DD as she never looked at me when I fed her - is DS breastfed? BF babies seem a lot less into gazing adoringly at mummy while feeding than FF babies, IME - too interested in the boob I suppose.

Sounds like you are doing a great job xx

agree with swc that it is too early to be trying to find an ABA practitioner. it would be more use to look at books such as Babytalk (by Sally Ward, I htink), but even then it is a bit early (goes through the stages of interaction/communication development by age). I am not sure what age things like Hanen are recommended for - I didn't use them myself - but again, the early communication stuff there cannot hurt.

but most of all, just keep on as you are - you say your ds laughs at you if you do something funny, so carry on! these turn-taking acts of communication are the building blocks for later speech/communication. use all the funny faces, exaggerate everything, keep the interaction going between you. it sounds as though you are doing this brilliantly. right now, no one can possibly interpret his actions (or lack of) as well as you, so you are where it is at. Keep reading, if you need to, and keep asking if you are worried. but most of all, keep notes of things that bother you - it is useful to have these lists if you do ever need to consult the professionals.

Hi there interesting what you say about rolling. My dd couldn't roll at all until she was 9 months old then when she did it wasn't in typical corkscrew fashion it was very awkward like like she didn't feel comfy doing it. She's now awaiting assessment..

I would also recommend the book Babytalk by Sally Ward. It gives lots of advice about interacting with children during various stages of their development (0-4 years I think). You may be able to get it from your local library.