What was your ASD/ Aspergers child like at 2.5 to 3.5?

[MNersanonymous]

I'm mildly concerned about ds. He is 2.9.

He has the following characteristics that make me concerned

• plays the same game over and over for ages - maybe two hours a day, which involves lining boxes up and filling and emptying them (but see below - this is actually a role play game based on copying a common household task)
• his speech has been strange in its development. He said his first word at 10 or 11 months and had about 20 words at age 12 months but then only about 45 words by age 2.
• he now has a very good vocab but struggles a little with fluency. He does have mainly 4 or 5 word phrases and then the odd longer one.
• he used to be really quite scared of other kids. He is now fine with ones he knows and slightly interested but never ever talks to them or initiates contact without me suggesting and would rather they didn't get very close- and def gets a bit nervous if they touch him
• he does not like certain buzzy type noises like hairdryers, lawnmowers, although I've managed to talk him round a bit with this.
• he isn't very huggy or kissy (but neither is his dad) - he will occasionally hug me but says he doesn't like kisses although occasionally will give me one if asked and very very very rarely spontaneously does so.
• he has a freakily good memory - can remember routes to places, knows where stuff is in the supermarket we shop at for several months, knows if we take a wrong turn, remembers small incidents from 6 months or more ago
• learned to recognise letters at around 2, and although I wouldn't say he's obsessed he is really into them. Quite good with numbers - can count things out up to 6 or 7 and can rote count to 20 but again isn't obsessive about this.
• gets really clingy when we have friends with kids round quite often, quite clingy at their houses too - takes ages to warm up (but maybe that's just a personality trait iyswim) He is very cautious

-doesn't like dirt, would rather be cleaned up all the time. Not totally obsessively but he is quite pedantic.

On the side of things which don't make me think he is on the spectrum (but I don't know that much about it)

• he can be quite a show off,confident sociable chap to us when he wants to be and with others when he knows them well.
• he points lots of stuff out to us
• he does make eye contact with us - not sure with others but will check
• the game he is really really into is a role play game and he uses a lot of imagination in it, substituting stuff around him to 'make' it into the things he is thinking of

-nursery are fine about him and he is doing well apparently.

I don't know where the line between normal 2/3 year old behaviour stops and mild ASD starts. Am I just being a neurotic PFB mum or should I be worried. He does seem a little different to most kids but I might be over analysing!

My experience is that nursery generally throws up if anything is wrong as it is quite intense group interaction. If he is fine there i.e no melt downs, interacting with other children, playing normally, then there is probably nothing to worry about. Others may come with other info.
The only proviso I would say is that early dx of anything does help enormously so if you have a niggling doubt just take it further through GP or health visitor.

His dad is a bit ASD ish I have to say, and he was a perfectly functioning child/ is as an adult, just a bit verging on ASD - not very affectionate, not naturally a people person in every situation.

I guess maybe that's why I'm being paranoid/ worried!

A lot of that sounds like DD (I think she is mild AS), particularly the lining up, buzzy sounds, memory, clingy at houses etc (we have been going to Psycho's since she was born, and yet she still clings to my leg when we arrive half the time). The things that make you think he isn't on the spectrum tend to be what make me doubt DD too.

DD is now 5. I have had my doubts from about the same age as your DS.

I still don't know. Paed wasn't overly helpful (he is under the impression that you can't dx AS until at least 7 when they can grasp language ). Things have gotten more apparent w/r meltdowns as she has gotten older, mainly if things change suddenly - so we just know to give her plenty of warning before things happen.

I don't know if I will ever be convinced one way or the other... maybe as she gets older.

Really, I know I haven't been very helpful here, I just wanted to say - he may be, he may not. I have found her so much easier to handle since I have stopped thinking so much is she/isn't she and started thinking "this is how she is, and this is how she needs to be handled".

It's interesting as 30 years ago when I was a kid he definitely I'm sure wouldn't have enough of an issue to be diagnosed with anything. If he does have ASD it must be quite mild so in some ways I should just get on with it as you suggest and just be as aware of possible of his quirks and help him as much as possible.

It makes me a bit sad when other kids try and talk to him and he just shies away.

At some people's houses he is more comfortable than others and he is getting a bit better I think with this.

In many ways he's very easy - he eats very well, sleeps well (touch wood), and occupies himself well, but he can be such a fusspot!

What was she like as a baby out of curiosity Flame? Ds was a nightmare and so frustrated until he was about 18 months.

I'm working on saying 'ooh it's good to be different sometimes' when he tries to insist on the same bowl for his cereal or whatever and actually the other day he was playing and muttered 'put these here, good to be different' as he put something 'out of place'!

I have 2 boys with AS/ASD and both were very different to each other at that age.

Ds1 had the more 'classic' signs of autism. He didn't really talk until around 3ish. He didn't really acknowledge when other people were in the same room as him. He had a lot of sensory difficulties. He hated noise and bright light. He felt little or no pain, but his hands and the top of his head were extremely sensitive. He had particular rituals which he had to follow. If they were changed in any way we had to start all over again. His bedtime routine alone took an hour - and that didn't include having a bath. He was fascinated with letters and hyperlexic. By 2.5yrs he could read complicated words and used to type in his name and password (9 characters long) to use the computer.

Ds2 was very sociable compared to his brother. He had a couple of words at 10mths, lost them completely about a month or so later and then didn't really say anything until he was nearer 2yrs. He had about 20 words at 2yrs but they were pretty much all things like numbers, names of shapes and names of colours. His understanding of language was way behind his spoken language. At 3.5yrs he could tell you very complicated things about his favourite interest, using some very technical language - but couldn't understand simple instructions like "Put the doll on the chair". Ds2 also had sensory problems. He couldn't tolerate wearing clothes and he hated noise and lights. He was also extremely active and couldn't stay still. Lots of running up and down. He also had the most horrific meltdowns.

The biggest differences I've seen between them and their NT sister is:

• Dd (2yrs) understands pretty much everything you say to her. She absorbs language whereas her brothers had to be taught it.

• Dd hates the hoover but can be comforted or talked around. Her brothers screamed and no amount of talking made the slightest bit of difference. Their reaction was far more intense.

• Dd lets me know when she wants something. The two boys thought I could read their minds and would be absolutely furious when I had no idea what they wanted.

It's good that the nursery are happy but you also need to be aware that they might not necessarily spot mild AS/ASD. Ds2's pre-school thought he was absolutely fine for the first 18mths or so. It was only when things eventually went horribly wrong that they saw it for themselves. In less than a week they went from believing he was fine to finding him almost impossible to deal with.

The only thing I'd like to add is that I'm not totally convinced that there is a such as thing as 'mild' autism. A dx of autism, by definition, means that the person in question will experience life-long difficulties in certain area, possibly requiring life-long support too. Nothing mild about that.

As a baby - oddly enough, now i am sat thinking about it, I find it really hard to remember - Psychomum would probably be better off telling you! She was never a cuddly baby except with my mum (who she is still most snuggly with now), she never slept during the day, she was very much (and still is) an on/off child - she wakes up and she is a whirlwind until bedtime, when she just snaps off again.

I agree with coppertop with the comforting thing - DS doesn't like hand dryers, but a cuddle and he is fine, DD freaks and legs it as fast as she can. Hoovering could only be done if DH was home and could hold her in another room.

DD didn't have any words for a long time, and again, it has been much more a case of teaching her whereas DS just absorbs. "Put the doll on the chair" would leave me sooooooo frustrated and be pointing, my finger right on the chair, my voice getting to the desperate high pitched stage. DS does it only if he wants to, but he knows exactly what I mean rather than that completely baffled look that DD used to give.

I have been stunned by DD and Nappiesgalore (or her various guises) - wherever we go, she clings to my leg for at least the first 5 mins (DD, not nappiesgalore ), but from the first time we went to meet NG she was this fabulously open little girl, the one I know exists but many people don't get to see.

Also agree with not necessarily relying on pre-school. I told them my concerns and they brushed me off, so when DD started school, I went with me being paranoid so didn't mention anything... they changed her reading book without telling her. She sobbed and sobbed and refused to read the book all weekend. I have since told her teacher, and they just asked what distresses her, how best to avoid and what to do if it isn't avoided. They have been fabulous.

Mild is never the right word, I know that - more very close to the NT end of the spectrum

Thanks guys. I think I will take a wait and see approach.
I don't feel the need to seek a proper review from a paed or anything as anything that is an issue is not a huge problem at the moment.

I suspect in my amateur way he is just towards the spectrum/ has some ASD traits. Whatever is there is tricky sometimes but never so problematic that it is making a huge difference to our family life. It will be interesting to see if, as he hits 3 in the next couple of months, whether he starts to take more interest in playing with other children rather than parallel play.

He is a lot like my dh in so many ways.....I'm not on the receiving end of many spontaneous displays of affection in this house I must say!!

The way I see it is that if Yellow is NT and Red is Autistic... DD is a very pale orange. Does that make sense?

Yes it does completely. Very wise description.

Can I just give my 2p? Taking a wait and see approach is a very bad idea with autism.

Early assessment and intervention are crucial for the best possible development. It really isn't one of those things that you can sit back and wait to see how things go. The difference in results between begining interventions at 2 or 3 and begining them at 4 or 5 or later is massive. Everything about autism advises that early intervention gives them the best chances.

Now, if you have concerns and you raise them and you get an assessment, I think you'll probably be told there's no issue. And that's great. The child isn't harmed in any way by the assessment process - there's no problem. But. If it does highlight a problem then they can begin to have help, there are programs that can make a real difference and the earlier the child begins, the better.

If you wait and see, and it turns out they did have asd, you've lost valuable time that could have been spent getting support for them and programmes in place. I firmly believe that any concerns about asd should be investigated asap, because it really matters, iyswim.

My DS1 was exactly like coppertop's DS2. At age 2 he had about 20 words, all nouns, then his vocab grew slowly and aged 2.10 he had about 50 words, also all nouns. His receptive language was way behind. He could not use language to get his needs met. He had some stereotypical behaviours e.g. lining up toys. His sensory issues weren't a red flag to us initially, he tolerates lights, noises etc well because he has low registration, but now they are becoming more pronounced (he can't sit still, always has to be on the move, lots of jumping up & down, craves proprioceptive input). Only because I have an NT DS2 I now see in hindsight the difference, the joint attention, absorbing language, need to share experiences and show things... it's fascinating in a weird way.

I also think that your average nursery staff do not have the experience or the knowledge to spot when a child may be possibly on the spectrum. Our DS1 was in a fantastic nursery, but no-one said anything other than he was fine until he was diagnosed. Then it transpired that he 1) didn't really do group activities b) preferred lining up cars in the corner on his own.

Hi
Thanks for your posts.
One of the reasons why I'm taking a wait and see approach is actually reading the posts here I just don't think he has many of the traits.

For example ds does have very good language understanding now and is learning new words well and certainly makes his needs known (you should hear him whine!)

So I just don't think it's worth going through all the stuff involved in pursuing this when we'd at most be told, well he might be a tiny bit on the spectrum iyswim.

My ASD son also doesn't have 'many of the traits' - he has no routines, no obsessions, doesn't mind change at all, has never lined things up, is very affectionate, gives kisses, loves cuddles and has good eye contact. He is still, however, at the severe end of the spectrum. All I'm saying is that autism presents in myriad ways. You know your ds the best and time will tell, either way, as to whether he will be NT or otherwise.

I am very grateful to have found this thread today. My DS is 3 at the beginning of July and his preschool have just raised some possible issues relating to his social skills. He does have some eye contact issues, refuses to answer questions unless pressed and we are getting nowehere with potty training. My HV is coming to assess him next week and I am also going to talk to the GP. Where do I go from here?

He very ocasdsionally lines things up and is definitely slow to play with other children. He is an obsessive charachter abd slightly eccentric but I am a novice t all this so woud welcome advice

When DS1 was diagnosed, we didn't believe it, because at 2 1/2 he was, to us and to any lay person, pretty much indistinguishable from his peers, also the word 'autism' was just too scary for us to deal with. His speech wasn't too alarmingly delayed and he was happy to socialise, made eye contact... the thing is, the gap is getting wider the older he gets. Today his same aged peers arrange play dates and sleepovers and argue whether Spiderman is better than Superman. Two years ago I didn't realise how much help he would need today. Two years from now we may realise that we were barking up the wrong tree, or things will change one way or other, but it's easy to get rid of services if we don't need them once we've got systems in place for him.

Your son sounds lovely by the way! As the others have said, you know him best.

First let HV assess him, then see what s/he has to say and take it from there. It's a long time ago now, so forgive me if I have this arseways up as memory plays tricks, but afair, I went to HV with my concerns about ds1 and she referred me to the child development centre where he saw the paed. It's not one visit, it's a process and it takes time, they don't (and shouldn't) rush into a diagnosis.

He was referred to the early years team and we had a home visiting teacher come out 3 times a week to work 1:1 with him from the time he was diagnosed at 2.5 - 3 (she might have started later, I don't remember exactly) until he started school. He also got his statement (of special educational needs) in place before he even started reception! Which I now know is nothing short of a miracle (We were such a pain in their arses you see. )

ds2 at age 3(ish) was picked up as asd by the home visiting teacher who was working with ds1. That was unexpected!

My advice is to make a total pest of yourself (in a polite way). We went on and on and on and on and...and they were very sick of us, but, as the saying goes, the squeaky wheel gets the grease!

And arm yourself. Make sure you know everything there is to know about asd, about the code of practice, about statementing, everything. Become an expert, because your child will need you to be.

Sorry, above was in reply to victorVictoria

VictorVictoria

I would agree with Hecate's response particularly about arming yourself with information. You are your child's best - and only - advocate.

I would only add that if the HV does not refer to the CDC ensure that your GP does. Infact I would see your GP asap and go down that particular route to see the developmental paed rather than use the HV.

Hmm I'm confused. Are there certain central traits that all asd kids have then?
Otherwise as a beginner to all this, it just sounds like any quirkiness is a sign which surely can't be the case?

Manny - what were the key traits your ds did show?

They key traits that Ds1 showed at 2.5 - 3.5 were:

1: Not using language for social communication, or indded to ask for what he needed. Lots of delayed echolalia and he could count and name colours and shapes and letters, but he couldn't say if he was cold or hungry or wet, or what he was doing, for example. At 4.5 he is saying more socially communicative things, but still very delayed and a tad bizarre. Eg he'll say "number 20 right a number 4" to ask to go in some lifts. Or he'll announce something but be unable to put it into context so it'll appear out of the blue, eg "a T turn da light off" or "S shut da door" to refer to incidents that happened hours before he mentions them, or even days before. His receptive language is also significantly lower than his expressive.

2: Very uneven skills. Both him and myself have this, but in opposite ways. He has good non verbal skills, in terms of things like jigsaws and colour matching etc and poor verbal skills. I have good verbal skills (better written down) and very poor non verbal skills.

3: Difficulty understanding emotions and acting accordingly, showing empathy and wanting somebody's reaction to something. We did manage to teach him to cheer and clap when he completed a puzzle which has helped somewhat in seeking other people's reactions to things, but he still prefers to do things on his own or if he wants you it's to use your hand as a tool. However, now, once he has, for example, finished a picture he will tell you what it is if you ask him, whereas at 2.5 to 3.5 you wouldn't get a reply.

4: Adherence to seemingly trivial routines and rituals. Big changes don't seem to phase him (I'm sure they do, but you couldn't tell). Yet little things like his dad getting home from work before he's home from school, his jumper being taken off a different way, not having a blue beaker at breakfast time, not being able to complete part of a routine when walking somewhere, can really throw him.

5: Repetitive behaviour, he will say and do the exact same things over and over. Not completely rigid, but he was and is is rather predictable in a lot of ways.

Most autistic children/adults 'follow the triad of impairments', see her for details: www.nas.org.uk/nas/jsp/polopoly.jsp?d=458&a=5489

Ds is a little unusual in that he doesn't have the routines, rituals or dislike of change, however he still got his dx at 3yrs old because he had:

no speech at 18mth (still non-verbal at 5.3yrs)
no pointing (still the case)
no waving (still the case)
no social gestures, just using us as tools to get what he wanted or whingeing (slightly less so thanks to basic PECS use)
very poor social interaction (still the case)
no interest in playing with other children at all (still the case)
no empathy (still the case)
severe sensory needs (still the case)

However, ds also has learning difficulties (as do approx. two-thirds of ASD individuals) so this adds further complications.

There is lots of information on the Internet, here is one that you may find useful: www.mugsy.org/pmh.htm

Thanks Manny. That's very useful.

I think overall I'm now pretty sure, having read this thread and the info on the links you provided, that ds is probably just that same ordered, mathematical, rational personality type his dad has.
I will continue to keep an open mind just in case but think that very few of those things actually applied to my ds - I was being open-minded so doubt I'm 'in denial'.

Thank you all for your input. And good luck to the others on here with worries - I hope your questions get answered soon.