Can I ask parents of children with autism whether you noticed anything as early as 6mths? (4th child and I know things aren't right)

[lovingthecoast]

Hi. I'm very worried about DS2 (DC4) who is just short of 6mths. Quick background is that DS1 was 'quirky' (still is) and after a chance mention on here about how worried I was about his behaviour when he ate carbs/gluten, I was pointed in the direction of the ARU at Sunderland and it turns out DS1 has leaky gut. Removing gluten and switching to goats milk was literally like lifting the curtain on his brain. Thankfully all this happened around his first birthday and although he still occasionally displays traits I think we stopped something more serious in its tracks. 2 DDs followed neither of whom have ever displayed any traits or issues with gluten or milk.

So, back to DS2. Lots of things don't seem quite right so if I list, I'd be grateful if anyone can comment or remembers their DCs at the same age.

I remember ds3 had things that where just not right. He had sensory issues from birth, he had repetitive behaviour from 3-4 months and started with obsessions at about 9 months.

hi loving, i think you hit post too soon?

Sorry, computer crashed.
1)He was very late to reach out. Only recently started doing it and with nothing like the gusto of the others. I seem to remember my others (at least the girls) reaching out around 3mths and by 5mths it was vigorous and by now they were grabbing everything. DS2 will just about casually bat at stuff. If you hold a toy in front of him he will sometimes reach casually but more often just ignore it.

2)He didn't seem to know how to breastfeed. Sounds silly but he just couldn't work it out. Struggled to bottlefeed too. Practically needed to let it drip into his mouth.

3)By this age even though I was still BF the others they were having quite a few bottles of expressed milk and when they'd see the bottle coming they'd make little squeaky noises, open their mouths and lean their heads forward then grab bottle with both hands. DS2 will now just open his mouth.

4)He rarely makes any noise.

5)Not sure if the Teitelbaum stuff is still relevant but I came across it when we were worried about DS1. DS2 'rights' himself in the funny way noticed by them and ends up face down with hands trapped so unable to crawl/move. He also fails the tilt test they talk about.

6. He does smile; in fact he smiles a lot probably more than the other 3. But, his smiling is different in so much as the others would not be smiling and if we walked into the room or over to them they'd smile in an animated way. He just smiles as if to himself rather than in response to anyone if that makes sense. So he is really smiley but almost in a non-social way. It's hard to explain what I mean by that and I'm sure if he wasn't my 4th I'd just think I had a very smiley baby but it's as if he's smiling through me rather than at/with me IYSWIM.

Ok, probably more but wanted to get down the main stuff worrying me. I'd be really grateful for anyone's comments. Thanks

Thanks. Leonie, I'm sure that's what everyone will think of me if I air these concerns. GP and HV thought I was nuts over DS1. Both suggested the Sunderland test was quackery!

Leonie, can I ask some of the things you noticed? Does my post ring alarm bells?

I hope nobody minds me posting in this section. I deliberately chose to post here rather than in B&D because I wanted to avoid all the well meaning posts telling me how they all develop at their own pace. I know that's true but I also know something isn't quite right.

Hi
I can see that you are worried. It's really difficult to answer, because I did notice signs with dd1 (Asperger's) really early on. I was dismissed as over-anxious.

She couldn't suck properly, so lost loads of weight following her birth. There were many sensory issues and she didn't babble or make a noise-she was quiet most of the time.

However, the signs you have noticed may or may not be a sign of difficulties-too hard to say early on.
It may be worth recording all of the concerns you have and keeping records of any incidents that may be relevant.
Then, if you see a pattern develop, you can take it further.

I would always say that you should trust your instincts and not allow 'experts' to patronise you.
Good luck x

Thank you, SR. Yes, I also think there are sensory issues. He hates the bath, more so now than before. Hates being naked in the same way that a newborn does. Doesn't like his feet being touched either.

Thinking about sensory issues -DD didn't like the bath either. Hated anything touching her head-especially a hat.
She was so easily startled and screamed inconsolably if a door slammed. She was easily over-stimulated by lights and noise and the only way to settle her was to swaddle her tightly and go into a dark, quiet room.

I finally admitted to the Paed that I thought DS4 (at 10 months) had autism, as he wasn't doing anything that the others had done. Turns out I was right. but thankfully that conversation started the Dx ball rolling and the support was put into place.

Dd3 was a really easy baby in some ways, she was happy to lie in the carrycot and look around..
From birth
She was extremely sensitive to noise,
She had to be wrapped to enable her to sleep,
She would not tolerate anything other than milk in her mouth, when she needed calpol after her first jab approx 3 months she gagged, screamed and vomitted when i tried to give it her.
She would not take a bottle feed from anyone other than me,
She never took more than 4 oz from a bottle, ever.

I hope you can get a proff to listen to your concerns it took until Dd3 was 9 to get a dx of ASD.

Good luck.

Thanks, SR, SB and INAL. Sally, do you think you noticed stuff because he was your 4th? I think so much of what I'm noticing is subtle and if he wasn't my 4th, certainly if he was my first, I simply wouldn't notice.

Re hats, we don't seem to have any problem with those. In fact, he seems far happier if wearing a really wooly fitted hat.

I 'knew' there was odd neurological-developmental stuff with DS1 by 6 weeks but never told a professional as I was worried they'd think i was nuts (and of course, i was, mainly from trying to convince myself it was fine when it wasn't).

The sensory stuff rings bells, and you've written that your ds has missed milestones eg social smile (should be consistent by 6-8 weeks) and vocalising with purpose, so you shouldn't have difficulty getting a referral. A really clear diary of all your alarm signs, with clear video footage of the things you've described will probably do the trick. If not, you can calmly, quietly, firmly point out to all the professionals that this is your 4th, you aren't prepared to 'wait and see' and you know these things aren't right.

Caesin on the brain may well turn out to be mainstream science one day, meanwhile ordinary milk intolerance/allergy upsetting babies is well accepted. And if a child was unable to breastfeed well for whatever reason, then constantly having belly ache from reacting to formula milk, if it might cause them to be too preoccupied to develop normally...

You'll know about the hypoallergenic formula milks already, but you may not know about how to relactate or breastfeeding whilst dairy-free yourself: la leche league and kellymom are good sites.

I 'knew' there was odd neurological-developmental stuff with DS1 by 6 weeks but never told a professional as I was worried they'd think i was nuts (and of course, i was, mainly from trying to convince myself it was fine when it wasn't).

The sensory stuff rings bells, and you've written that your ds has missed milestones eg social smile (should be consistent by 6-8 weeks) and vocalising with purpose, so you shouldn't have difficulty getting a referral. A really clear diary of all your alarm signs, with clear video footage of the things you've described will probably do the trick. If not, you can calmly, quietly, firmly point out to all the professionals that this is your 4th, you aren't prepared to 'wait and see' and you know these things aren't right.

Caesin on the brain may well turn out to be mainstream science one day, meanwhile ordinary milk intolerance/allergy upsetting babies is well accepted. And if a child was unable to breastfeed well for whatever reason, then constantly having belly ache from reacting to formula milk, if it might cause them to be too preoccupied to develop normally...

You'll know about the hypoallergenic formula milks already, but you may not know about how to relactate or breastfeeding whilst dairy-free yourself: la leche league and kellymom are good sites.

With my DS I definitely noticed things early on but was dismissed any time I raised this with anyone.

• Sensory issues from birth. Would only drink milk COLD (if milk was not refrigerator cold he would gag, vomit and cry), sensitive to noise too.

• A very passive 'easy' baby, and smiley but like you mentioned, he would be smiling in general, not smiling in response to interaction from others.

• Bad sleeper. Has always needed very little sleep and sleeps in short bursts.

• Has always needed firm pressure (a heavy blanket, or a hand pressed on him) to get him to sleep, another sensory issue.

• Extremely clingy with me, like a physical need. He was named the velcro baby as he would have to be physically attached to me at all times. I am his reassuring constant and he is still like this, overly clingy and extremely overly attached to me now. Whilst being held though as a baby he was not wanting interaction - he would like to be held with his face kind of in the crook of my arm, I remember my mum and nana commenting on it. Most babies like to look up and see their mummies faces, mine didn't.

• He was though very with my long hair (and any other lady with long hair), his first sensory obsession.

Loving - definitely noticed more because he was my fourth. My twins were born in 1999. Tdd had a massive medical issue which was very time consuming. We were grateful that her twin Tds was such a hood baby. Lovely and settled did everything he should have done. By the time they're at Nursery aged 4 it's apparent that he has quirks which eventually becomes Dx as AS. DS3 was fine, 16mos later. DS4 was born. He had problems in utero. We were assured when he was born that these problems had resolved but I believe that they were the main cause of his ASD. He refused bottles from 10mos old. It took me a whole month to get him to drink, and we had to stop formula and bottles and swap to juice out of cups. Very stressful and that was what made me accept that he wasn't quite right. He is 5 now, deaf and doesn't speak. I think that he is seriously delayed developmentally by at least 3 years. He is beautiful.
Btw. You can self refer for Portage, and the earlier the better to get on their waiting list. They help with play therapies tailored to suit your Dc. Google Portage and see if it's in your area. They will also help with DLA forms and Dx and SA reports. Worth doing.

Thank you, Maria!

Boredandrestless, YY, DS2 is obsessed with my hair and the long hair of his sisters. It really is his main interaction. And I'm glad you seemed to understand what I meant about the smiling. Everything I read goes on about lots of smiling being a good thing and people keep saying how smiley he is as if it's a good thing but although he smiles more than the others it just doesn't seem right.

Thanks Sally. Sounds like you've had your hands full!
I asked because I'm not sure most people would notice anything or indeed that I would notice stuff if he was my first. Partly because he is doing some stuff like reaching but just not with the same 'oomph' as I believe a 6mth old should. I also remember when the others were about 4mths and on the floor or mat and I went over or stood over them, they'd smile and get very excited and their legs would start kicking with excitement. I remember DD1 looked as though she was on Riverdance as her arms just moved up and down slightly but her legs were going frantic. DS2 didn't/doesn't ever show that excitement. The others did that and similar in the cot whenever I went in afetr they'd napped. DS2 barely reacts to me standing over the cot.

In ds's red book HV wrote at six weeks that I was concerned something was wrong. I knew he wasn't like my others (he was my 4th) even if I didn't know what that "wrong" was.
Things that stick out are he didn't snuggle into me, he didn't search for me, I never got those "special" smiles,he'd crane his neck to look at lights rather than faces, he was silent unless he was screaming in rage, he'd scratch his pram top constantly, he never lifted his arms to be picked up, he'd self soothe picking him up made him scream louder.
With dd who was a very easy baby my first warning bell was that she didn't discriminate between myself and anyone else who happened to pick her up. So when a friend looked after her she never acknowledged my return.
I think because they were my fourth and fifth children I was far more sensitive than had they been my first tbh.

Not at the time, no...but comparing him to my DD (4 yr gap) and knowing now that he has AS, there were definite quirks - though of course I don't know if some of them are 'normal'.

The startle reflex - he did it for everything, I mean, everything, lol, DP snoring even.

masses of issues breastfeeding, then when I moved him onto mixed feeding - his bottles had to be hot, to the point that they made him go sweaty

He hated being naked, dressed was fine, in water was fine, but just naked made him scream and almost tremble...swaddled was best.

He quite often looked above your head rather than at you, you couldn't play with him and then stop, he freaked when you stopped, lol, he was a terrible sleeper right from the start - he wasn't up crying or anything, just didn't sleep.

When he got a bit older (closer to a year) he turned everything round to spin the wheels on them, not just toys but everything, he would sit watching the washing machine with his head in the door for ages, no matter how many washes you did and he never wanted me to play with him with his toys.

He did hit all his milestones at HV checks though, lol

It's amazing how it seems like an every day thing now. I know that to other people it looks like the hardest thing in the world bringing up 4 children who all with different needs and three of them with vastly different SN. I have learned to be laid back about stuff, as quite honestly I would be a wreck if I worried about every little thing. That's why I have DH to do that for me!!!
It certainly isn't how I envisaged parenthood, but it's our version of it and I think that we aren't too bad at it

Sorry about the double post. Any clinician involved with the BASIS network or similar research on baby siblings of ASD-diagnosed children will take you seriously, but obviously the more general NHS people will sensibly be wanting to rule out other general illnesses, an overall developmental problem, vision or hearing issues etc before considering any onward referral.

Thanks again, Maria. DS1 has never been diagnosed with anything so DS2 not officially a sibling. I know DS1 is on the spectrum but so mild as to be missed by pretty much everyone other than DH and I. At 3yrs I think a paed would have seen it but now at 8.5yrs, you'd have to live with him to notice. I firmly believe had we not cut out gluten and casein before he was 1yr, things would have been much more severe. As it is, he has rarely had a solid bowel movement his whole life.

Hiya, ds4 doesn't need to be an 'official' sibling to see one of the doctors involved via their normal NHS clinics. In fact the BASIS is pure research, not official diagnosis or treatment.

It's just that people actively thinking about 'what should the PhD students look for in the 2012 baby-sibs' might be more aware of subtle stuff. But the standard local procedures are needed too in case there's something different.

I was oblivious! I worried most about DS1 who is the most NT of my 3. He was an odd baby, clingy, nervous, very delayed speech, divergent squint, bowel issues, umbilical hernia... My DS2 who has ASD, was such a relief, not at all clingy, no health issues, self soothing, laughing all the time, easy as pie. And DXed at 3! DS3, I watched like a hawk. He is quirky as anything, I'm keeping an eye on him, but at 9 now never likely to get a DX.

I think what I'm saying is, my instincts were crap, but none of my boys were exactly 'normal' so I didn't have anything to compare. They weren't ever like friends' DC, though.

Keep an eye on it. At 6 months there isn't much you'd do different, anyway, but at least you are aware something may be up.