Early signs more severe ASD?

[ruth2010]

Hi,
Can anyone help me with this question?
If ASD signs are present early on (my son is nine months)does this predict more severe ASD in the future (rather than if symptoms become apparent aged 2/3)?
It feels to me that this may be the case, and if so, whats the next best step for me to get help for my son?

No - I don't think severity or otherwise can be picked up in this way - it's such a complex area. What are your concerns ?

I don't think there is an easy answer to this. However what it will mean is that your son will get help much earlier on, which will ultimately benefit him.

What signs are you noticing? Has any HP (GP, HV, etc) expressed concerns? I believe that children will not get a formal diagosis until around 3ish. However we were told at 14m that it is "more than likely" that DS has ASD (among other things..). How severe it will be remains to be seen.

The next step, if you haven't already done so, will be an assessment by a community paediatrician.

HTH

DS1 I had no concerns about until he was about 4 (I just thought him very bright, and therefore also a little odd) now apparently very obvious AS, very little assessment needed.

DS2 at upto 2.5 was looking really ASD - no pointing, no communication, didn't recognise name etc etc, but now at 4 the only ASD type sign is he is a bit rigid to change (according to nursery, compared to DS1 at that age he isn't rigid at all ), and violent tantrums (declining) so think probably not ASD at all - although he definitely has sensory issues still.

So in my experience, no.

My two have moderate autism (dd was dx'ed moderate to severe) At 9 months the signs were there for them both really. Ds screamed constantly, didn't sleep, didn't recognise me or anyone else as being familiar, didn't smile or laugh or point. Dd though at 9 months was a very passive and easy baby, never cried, never demanded anything, needed a baby monitor because she never made a murmur when she woke and was very serious. She didn't differentiate between me or a stranger which I found upsetting tbh.
What signs are you noticing?

Ruth I don;t think early presentation = increased severeity, no.

For a start regressive ASD tends to be pretty severe- and can happen any time up until 3.

On a more personal level, we knew ds1 was different from birth- he has severe Asperger's in that he needs a statement and gets HR Care which is rare with the diagnosis, but should work one day if we are careful about finding teh right routes.

DS3 otoh we had no concerns over until a Nursery staff member pulled us aside when he was pushing 4; at his IEP meeting the other day it as discussed that independence in terms of going out alone or work is very unlikely for him. We had no idea though, he just seemed tos top making progress at 3.

I don't think early signs indicate greater severity.

I also think IME that the severity of a persons autism can fluctuate over time - by that I mean that when DS is going through a particularly stressful time / hormonal phase / growth spurt / it's very windy outside then he can present as much more severely affected as he will stim more; his eye contact becomes poorer; he behaves more aggressively etc etc

No (well not in our case), dd1 showed signs of ASD from day 1, hated people would never settle and as she got older hated any change in routine and lined her toys up. She was diagnosed with Aspergers at the age of 4, she's now almost 7 and i would say only has mild Aspergers.

Dd2 showed no sign until her speech and language didn't develop, she was a easy going baby with good eye contact. She was diagnosed with Autism at the age of 3 and severe language delay.

Thanks for all your messages.

My son was 10 weeks prem and had meningitus so we are very aware they may be developmental issues.

The main issues at 9 months are: poor eye contact, doesn't seem to recognise us, only smiles sometimes at us, doesn't like to be cuddled, doesn't reach to be picked up, doesn't respond to name but hearing is fine.

We have a pead but they haven't been very useful. Is there anything else we should be doing? or any treatments/therapies that might help at this early stage?

we saw signs (rocking, non eye contact, not liking to be around lots of people, didn't respond to name but hearing fine)in ds2 from 9 months although didn't know at the time just what it meant.

He was diagnosed with classic autism at 22 months which is extremely early but I don't think that it was because he is particularly severe (45 on CARS) He went to a special needs nursery and then a specialist unit. His difficulties weren't as severe as many of his peers who at KS2 were transferred to the SLD school. He was "dry" by 7, talking in sentences by 8 which although not grammatically correct, were understandable and yesterday we got a letter home from school to say that he (now approaching 15) is to take external exams (albeit nowhere near gcse)in core subjects at school.

Looking at his peer group,although he was diagnosed earlier than the rest, the majority have more difficulties than he does. Early diagnosis means early intervention and I'm sure that has made all the difference with us

I don't think it works like that. For many, 'signs' are present from 6 months or so but parents don't know enough about what they are looking at to recognise.

IMO, identifying ASD at 9 months means LESS symptoms as you can get to work straight away whilst their brains are still so bendy.

My ds was dx with moderate-severe at 2.6 but is now presenting as HFA/aspergersy.

Not suggesting you can change your child's difficulties but certainly many improvements can be made to how they develop the earlier you get to work.

Absolutely Stark, early input is by far the most effective.

Locally tehy don;t dx in terms of moderate / severe etc as kids are far more pliable than that: you get ASD as a dx (DS1 was last of the Asperger's DX receivers- somewhat sadly). In part thats to sidestep the SSD blanket ban on helping people with AS, but its mainly becuase children can switch anywhere along teh spectrum as they progress and you certainly cannot know at 2.6. Heck, it's not very easy to categorise at many ages: ds1 with AS is far, far harder to manage than ds3 with moderate - severe asd. Each aspect of the behaviours and needs needs to be taken individually and severe needs in one area can be balanced by quite moderate or mild ones elsewhere- ds1's decent language skills balanced by behavioural nightmares, and ds3's lack of language skills by his sunny personality.

ASD is all swiongs and roundabouts and effectively resists categories except at the extremes IMO.

Any suggestions of early interventions we should try and find out about?

At 9 months your options are limited but I can tell you what we did with ds4, given that he has two asd siblings already (he may have some low level AS but nothing more- quite a score in our household LOL, even ds2 seems to have ADD and dyspraxia).

We did the dietary stuff- for us casein was already ruled out as he was intolerant, but we also stopped gluten until he was 2. Otherwise it was mostly about promoting social interactions; loads of singing and baby classes (actually a disaster, at one point i;d ahve sworn he would be the most severe of all); steady routine; avidance of negative environmental factors- eg with a fever always trying to reduce temperature other ways before trying painkiller as(there is research evidence for this BUT it is never worth risking a baby's safety- strip down, cool (not cold) bath, then if that doesn;t work paracetamol or otehr similar meds).

Moving away from the A roads we had always lived alongside.

Nobody knows much about the aetilogy of ASD but it seems to be likely that it is genticv (not always inherited) and needs a trigger- so ds1 was probably triggered by a terrible pre-birth period (I had hyperemesis and pre-eclampsia). if that is right there is a chance that you might be able to level the odds a bit BUT there are no guarantees your child has ASC at this stage or that if he does it can be limited. I think for us it was just the knowledge we were at least trying, if that makes sense?

Both mine girls were very different at 9 months. DD1 would scream for hours and no amount of comfort would help her, she failed 3 hearing tests and we were told she might be deaf (I knew she wasnt), would rock and was very self directed.
DD2 was the perfect baby never cried, didnt need/want to be held, (would physically push off you) love to just be quiet on own.
Both of both were very smiliey girls though. DD1 has a dx at 6 of HFA and DD2 is going though dx at the moment and we arent quite sure where she would be on specrum but more than high HFA too, shes 3years
I guess lots of the things we are told would be helpful for your LO, so lots of body awareness though touch, swings, music movement. I would spend as much time as I could just being with him, even just laying beside him on floor if he wont let you hold him and just get closer as days go on. Find something his intrested in and go for it.
9 months is very young, is there a history in the family? Is he your first?

No. At the age of 9 months I would have said Ds2 fitted into the parameters of a "typically" developing infant.
At the age of two I would have said there was no way he was ASD, he was just a bit delayed.
Now that he is 5, with significant interaction difficulties, severe learning delays, almost non verbal, significant obsessions and rituals and with the emotional age of about a 12 - 18 month old, his autism is unmistakeable.

Ds1 showed signs of something being different about him from a very young infant, though at first we did not realise and then things were put down to his glue ear. By 2.5 I was thinking strongly about ASD and my belief turned out to be correct. He is still very much on the spectrum, but his needs and difficulties in many ways are less severe than Ds2's, even accounting for the two year difference.

both f mine were physically delayed too, both low birth weights with placental difficulties.

ds1's developmental delay was apparent from about 6 months, but even prior to that he never seemed 'interactive' like the other babies I saw, but I couldn't put my finger on what was wrong. The hand flapping was pretty much from birth, but we kept being told as time went on that it was due to his language delay that he was flapping, only later did we realise he was stimming. Dx with autism at 2.5yrs, afraid I can't say yet on the prognosis as he's still little.

I can't remember how I came across this site but it may be of interest www.infantmentalhealth.com/. I must stress I haven't been in touch with them as I have too much else on plate right now, so I have no idea what they offer, but I was interested in what the site says about signs in young infants and early intervention. I'd be interested to see if anyone on here has experience with them...

I had also come across this site and contacted them. They offer psychotherapeutic work with the babies and assessment from Dr Stella Aquarone, who's written a lot on autism and very experienced. I am quite tempted to give it a go, although it's pretty expensive. Anyone else know anymore?

nope DD1 was 5lb at 37 weeks and DD2 was 5lb 3oz at 38 weeks.
DD1 never crawled, didnt sit till 10months and bum shuffled till she walked at 2years. DD2 sat at 10months, crawled at about 16months and finally walked at 22months.
Both my girls have bowel problems and have terrible spacial awareness.

I am quite tempted to give it a go, although it's pretty expensive. One thing is for sure. If you want the best outcome for your child you are going to have to spend a lot of money on it.

You have to go with gut instinct. If you think there's a chance it might work, and if you can afford it - you just have to go for it.

The NHS are not going to help you with any kind of early intervention....

(Not that I know anything about this treatment, or am recommending it. Just saying in general....)

Very little is known about early intervention and its success. A recent review of many published studies (journal Pediatrics, 2011) has found only 2 randomized controlled trials -RCT (both american). One of them, the Early Denver Model, showed clear improvement in language and general skills if intervening as early as 20 months. An RCT with younger infants (8-14 mo) is now under way in the UK. It is generally believed that if interventions are to work they need to (1) involve the parent, as it it the parent that spends most time with the child and knows the child better, (2) involve structured social interaction, where the parent is trying to follow in a child interests and behave in a systematic, predictable manner and (3) be started early but probably best after 6 months, when one has acquired enough evidence that there are developmental problems (n.b. we still do not have a clear selective early marker for autism ! latest research is aiming at defining such behavioral markers at 12 months). However, this doesn't mean parents should not discuss their worries with professionals much earlier ! They should nonetheless be cautious when embarking in expensive interventions which have not proven their success, meaning which have not published their results in peer-reviewed journals. When a successful way of intervening will be found it will be well-known and advertised (including by NHS and the NAS) and probably accessible for all.

If you are interested in early intervention you need to contact RGO (on mumsnet) or you can PM me and i'll give you her details, as far as I know she is the only person in the UK trained to deliver the Early Start Denver Model and it is based mostly on what you can do at home. She is brilliant and I cannot recommend her highly enough.

We got a diagnosis of ASD at 2.9 yrs and told our daughter would most likely not get to go to a mainstream school but it would depend on a few factors.

Our dd developed normally up to around 14 months, only sign of autism was her lack of eye contact when we fed her when she was a baby. However, at 14 months she changed dramatically. Complete 180, would describe really as severe autism, no communication, eye contact, no interaction with anyone, would just sit in place and stare or pick up rocks and throw them over her shoulder for hours if you let her.

We knew getting a diagnosis was a long process so we just started doing stuff, reading, got her a few sessions with a private SALT, private OT who did lots of sensory integration therapy and this made a HUGE difference. I started talking to RGO who gave us lots of tips and advice before we had our diagnosis and its been 9 months since DD has had her diagnosis and we've been working with RGO and doing heaps at home ourselves and with volunteer SALT students. DD's diagnosis now is unmistakeably HFA, she talks, enjoys mainstream nursery and will most definitely be going to a mainstream school.

A lot can change when they are young. So what i'm trying to say in a very long-winded way (sorry!) is that regardless of how severe they might seem early on a lot can change and anything you do will be very helpful to your child even if you haven't had a diagnosis. Don't worry about how severe you think it is early on because most times that can and will change. Our paed said that only in a handful of cases in all her career did she see any kids that didn't move up on the spectrum.

A few books i've read and highly recommend are:

Overcoming Autism by Lynne Koegel: www.amazon.co.uk/Overcoming-Autism-Finding-Strategies-Transform/dp/0143034685/ref=sr_1_fkmr1_1?ie=UTF8&qid=1307282233&sr=8-1-fkmr1

Raindrops on Roman: Overcoming Autism by Elizabeth Scott: www.amazon.co.uk/Raindrops-Roman-Overcoming-Autism-Message/dp/1934759244/ref=sr_1_1?ie=UTF8&qid=1307282271&sr=1-1

This last book is awesome because she tells you exactly what she did at home and other than SALT once a week and OT she did everything herself from very early on and the book has heaps of ideas of things to do to help.

Until you have a diagnosis it will not hurt to start doing positive things to help your child. Please feel free to PM me!