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Unusual 20 month old?

26 replies

CupofTea · 10/06/2004 19:37

Posting on behalf of a friend who has started to get really concerned about her son. He is 20 months old and has never mouthed toys (in fact he will not put anything in his mouth i.e. he will not feed himself finger foods), he does not point, wave or clap and when she asks him where something is he ignores her or seems not to understand her. He does not talk at all. He loves cuddles and is very good with eye contact. She is worried sick and I thought maybe you ladies might be able to shed some light so that I might have a half-sensible conversation with her (rather than me saying the age old children-develop-at-different-rates thing). I am sure I read something somewhere about children who did not like to explore things with their mouths... ? Thanks in advance.

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coppertop · 10/06/2004 19:50

Apart from the eye contact he sounds a lot like ds1 at a similar age. His mouth was/is hypersensitive so he never mouthed anything. In fact he spent a few days in the SCBU being tube-fed because he wouldn't even let milk in his mouth.

He loved to be cuddled, especially if it was a big firm hug. He likes the sensation of pressure. At bed time he will insist on a heavy duvet to cover him up - even in this hot weather. We have to sneak in later and uncover him while he's asleep.

He finally made it into the system when he failed his 2yr check-up (didn't talk/ignored the HV's requests to point to things etc). He was diagnosed with high-functioning autism earlier this year.

Piffleoffagus · 10/06/2004 19:55

Has her health visitor not flagged anything up at his checks as yet?
Worth her making an appt, asking what they think and ask for a referral for peace of mind.
Children do develop differently but I would be worried and would seek clarification from a paediatrician, also if he did have a problem such as CT mentioned, early assessment and help would be really important, I would have thought.

CupofTea · 10/06/2004 19:57

What is "high-functioning" autism? She is terrified about autism and I understand only a little about it. He is such an alert and bright little boy and I always thought he was 'in the clear' due to the cuddles and eye contact.
Coppertop, when did you first have thoughts that your child was somehow a bit different?
I am not now sure what to say to her. It almost feels as if she needs to hear this from someone other than me!
Thanks you for your input.

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CupofTea · 10/06/2004 20:07

He has been refered for speech therapy and to a paed development professional.
When should 'average' children point and wave?

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coppertop · 10/06/2004 20:18

There are different 'levels' of autism. At one end of the spectrum is severe autism, then moderate autism, and at the other end of the spectrum is high-functioning autism. It means that although ds1 is autistic he can function pretty well. If you were to meet him you probably wouldn't guess that there was anything wrong at first.

When did I first suspect that ds1 was different? Well he's always needed very little sleep, even as a newborn. In many ways he was a little angel as a baby - but he was TOO angelic IYSWIM. After the age of about 5 months he rarely cried and would quite happily have sat in his pushchair watching the world go by if I'd let him. We even had to guess when he was hungry because he didn't cry to let us know. By the time he was about 14 or 15 months old I knew that something wasn't right. I didn't know about things like the importance of pointing, shared interest etc but ds1 just seemed different. He'd passed 2 hearing tests but didn't flinch when he heard loud noises and rarely responded to his name. He also didn't play with toys and preferred to be left alone. He didn't talk or even babble.

He's an extremely bright little boy. His word recognition is excellent. He's only 3 yrs old but can read words and numbers, count, do basic subtraction, pretty much tell the time on a non-digital clock. He learned all this without any kind of intervention from me. Tbh I would be happier if he just learned the art of toilet-training.

Once you know what the problem is then it'sa lot easier to find ways of dealing with it. In the past year ds1 has made huge amounts of progress. He's starting at a mainstream school in September and it's predicted that he will do well there. He now chatters away happily, although he still needs SALT. His mouth and hands are far less sensitive than they used to be. Early intervention has been a great thing for ds1.

coppertop · 10/06/2004 20:23

I think pointing generally starts at about 12 months usually. Ds1 first pointed at about 2.5yrs although he didn't always understand how to follow someone else's pointing. I'm not sure about the waving.

CupofTea · 10/06/2004 20:45

Thank you coppertop. Your response is lovely. To someone who is MAY be on the brink of an autism diagnosis, your post would bring great comfort. As said, my friend is terrified of autism - "the 'a' word". She has talked about it a couple of times, but dismissed it out of hand. Your son sounds both clever and lovely and how fantastic it is that he will do well in mainstream school.

I think that it must be every parent's passion for their child simply to be like other children (especially when faced with the possibility that their own child might just be different). Thanks.

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coppertop · 10/06/2004 20:52

Has your friend been able to do any reading about autism? I know that before ds1 came along I didn't know all that much about it. I'd only ever heard about the more extreme cases and would never have dreamed that an autistic child would be able to do even half the things that ds1 can now do, eg chatter away and giggle with his brother, or go to a mainstream school. Autism is obviously not something you would wish for but I was surprised at how different the reality is to the traditional stereotype.

CupofTea · 10/06/2004 21:06

I think she sees autism as screaming in supermarkets, 'bad behaviour', children who do not appear to love their parents (won't cuddle them, let alone look at them). I thinks she sees it as a lifelong struggle and possibly a perpetual embarrassment?.

I am not sure she has read much on the subject and maybe she would rather not (like accepting it is not so IYSWIM - head in sand?).

I am interested to learn that autism sits on a spectrum. Still struggling to think what to say to her, though.

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Jimjams · 10/06/2004 21:24

Pointing develops in stages. IN terms of autism protodeclarative pointng (pointing out things of interest) should have developed by 18 months.

The CHAT test is a god place to start. Seehere

My son is further along the spectrum than coppertop's. At 5 he has very little language. He can point (started after 2) but often gets it wrong (wrong direction, wrong finger etc).

He is however very very affectionate. Picked him up from school today and got the biggest hug- his meal time assistant is always commenting on how many cuddles he gives her at lunch time.

At 20 months he looked perfectly normal apart from the fact that he didn't point and he was diificult to engage in play. In fact assessments carried out after he was 2 said that he "definitely wasn't autistic". The eraly signs are subtle, but I think your friend needs to start to get into the system. It will be frustrating as its difficult to get anyone to take you seriously. I used to just say lamely "but he doesn't point" and people would look at me like I was mad. He's vile in supermarkets now, but at the time he was very very passive-0 the most laid back baby in the antenatal group as everyone said- so he didn't fit the screaming tantrums etc (makes up for it now ) which again makes it harder to get taken seriously.

Referral to SALT is a good place to start- hipefully she'll see a good SALT_ that's how we got into the system. It's even better that she's been referred to a developmental paed. The hard bit is getting the referrals- it's almost time to sit back and try and relax about it (impossible I know).

Does she have internet access? I would say it is essential if you have an autistic child. (or a child with any SN really). It can be avery isolating time. I joined autism lists before my son was diagnosed- theyu were very welcoming andit meant that when he was diagnosed I had a support group ready.

There are lots of very good books out there. Any visit to the library will yield some. I had a little collection.

How's her dp/dh? Often they find acceptance very difficult which can make things difficult for everyone for a while.

CupofTea · 10/06/2004 21:47

Thanks Jimjams. Can I ask the same question - when did you first notice your son was different? Seems you were very clued up anyway so knew what to look for.
Her dh is very laid back and has not been worried although I would guess he is starting to think something is up.
I think that she has internet access and I agree that building up a support network now will pay dividends, but how do I bring up the subject? I am not sure she will thank me for being the first to broach the 'a' word.
Day-to-day, how does having an autistic child, affect your life? Do you think I would be able to tell an autistic 20 year old from a non-autistic 20 year old? I am struggling to understand what autism means long-term. Wasn't Einstein autistic?

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Jimjams · 10/06/2004 22:05

Autism is a huge spectrum. I doubt my son will live independently ever, but plenty do. A great book for you to read would be Sam and George by Charlotte Moore. I keep mentioning this book but it described my life to a tee (Sam is like my son). Also has a VERY good section on how to be helpful if you are a friend. Day to day autism affects my life hugely at the moment. I can't go out at all with both boys as can't manage ds1 and ds2. Both need full attention (ds2 because he's 2 and ds1 because he runs into the road etc). I can go to some places with ds1 alone but not that many. It really does affect everything- constantly have to think ahead, constantly have to think about safety, and constantly trying to avoid meltdowns. I don't think your friend needs to know this yet though. If I'd known at 2 what my life would be like now I would probably have walked out and emigrated- but when you live it you get used to it- and it has some good bits (sense of humour is absolute necessity). I now know the joy of washing lines which I wouldn't have discovered without my son.

TBH I didn't really notice my son was different (he was my first). He also developed normally until he got ill at 11 months then regressed (lost speech etc- so he stopped talking at 15 months). Looking at video of him pre-regression I can't see anything. He holds up his arms to be picked up, he played peek-a boo- he said daddy. He was a bit interested in lights so he must have had some sensory issues going on I guess. I was searching for MMR info and came across the CHAT test when ds1 was 17 months. I realised he would fail so looked up autism. Then began to worry. I t was an awful time as the few people I confided in thought I was imagining things. I told my mum, dh and my best friend who is a) VERY honest and b) had been a nanny for years. Everyone said I was mistaken. Finally when ds1 was over 2 my friend said that she did think something was wrong, that she hadn't been able to see it before, but that it was becoming clearer. For him, because he is sociable, and has good eye contact in relaxed social situation, and is very affectionate he didn't seem that different until his langauge failed to develop. Now having ds2 I can see there were other signs, but they are very subtle early on.

Broaching it is difficult. And to be honest as she has been referred on wouldn't say anything at all. Just be there in case he does get a dx (he may not). I never say anything to anyone unless directly asked (when I try to be honest but sensitive) a) because I could be wrong or b) because I may be right, but that doesn't mean a dx will be given.

I think if you read George and Sam you would be doing your friend a great favour as you would be much more understanding of her life if her son does turn out to have autism (and he may not). And also you could lend it to her when she was ready. And its a great book!

coppertop · 10/06/2004 22:21

When ds1 was officially dx'ed this year, the Paed also told my dh that she thought he too was on the spectrum. This was a huge relief to my dh as so many things finally made sense for him.

He's now in his 30's, has been to university and got a degree, and works full-time. He is obviously at the high-functioning end of the spectrum and it certainly doesn't mean that every autistic person will be the same but it's just an example of how autism doesn't necessarily mean you can never lead a relatively normal life. I say "relatively" because there is no magical cure to autism. Dh will always be on the spectrum. He's just been lucky enough to have found coping strategies over the years that work for him. He still has sensory problems, assumes that I know exactly what he is thinking, and just doesn't understand social 'rules'.

I don't want to gloss over autism in any way. Like any other SN it can be bl**dy hard work, but I just wanted your friend to know that there is hope.

CupofTea · 10/06/2004 22:25

Thanks Jimjams - I will get and read the book.

Seems the most worrying time for you was BEFORE you had a diagnosis and then I suppose you do as you say - you learn to live with it. My friend is at that worrying point. Is he, or isn't he? He is. He isn't. He is....... He did this....... He didn't do that..... He did that... He MIGHT have done that....... Hell.

I suspect knowing makes it easier to deal with.

What a blessing children are and how difficult they can make our lives!!

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CupofTea · 10/06/2004 22:48

.... and thanks coppertop for insight on your hubby. Just demonstrates that the spectrum can be vast. Talking of which - do you know what determines whether a child will be autistic? Can it be/is it genetic?

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jmb1964 · 10/06/2004 23:32

Dh's on the spectrum - maybe all men are??
When our ds1 (Aspergers) was diagnosed, it set off all sorts of trains of thoughts about why my dh is the way he is. Our psychologist came out with this wonderfully tactful statement that many fathers of Aspergers children have 'executive functioning difficulties' I'm still not entirely sure what that means, but it has become a bit of an in joke with us - a ready excuse when once again dh realises he has failed to do what would normally be expected of him in a situation.

InternationalGirl · 11/06/2004 00:41

Sometimes wonder about my hubby too. If someone would dx him as being on the spectrum maybe that would explain a few things!! Have heard autism can be genetic, could be just a physical predisposition, 'damage' somewhere along the way or related to a vaccine as far as I can tell. We think our DDs autism is related to seizures she was having before her 1st birthday.

Coppertop -- DD sounds a little bit like your DS earlier on. She was very cruisy - too cruisy in fact. Really didn't complain about anything, ask for anything, etc. Wandered around doing her own thing like everyone else was invisible. Before she was 2 she would sit on the floor in the playroom by herself and stack all the legos on top of each other (yellow on top of yellow, red on top of red, etc etc,). Was also very good at puzzles/shape sorters from early age. No pointing, still very little pointing (age 4 + 3 months). There was NO eye contact (still takes a lot of effort on our part sometimes). NO words till about 3 yrs 8months (still limited but coming along - couple of phrases - several nouns). Few real cuddles but LOVES a backscratch. She wasn't affected by loud noises and never responded to her name (still doesn't say her name but sometimes (3 x out of 10)responds). There was no babbling at all till about 6 months ago.

This is just my experience. I am learning that autism is such a spectrum that you can have 100 people with autism in one room - the first thing that will be apparent is how different they all are then the next thing will be how similar they all are. My hubby still has a hard time understanding dd has autism because in so many ways she is doing great but then he says "Why doesn't she just TALK". He still has visions that kids with autism are the kids spinning plates on the floor and I try to explain it's not like that anymore - the difficulties can be so subtle but are still very real.

CupofTea - For you it is hard to force the information on others if they are not ready for it but definitely the more you understand the disability the more you can deal with it (from a distance or as a parent).

Sounds like your friend is really worried about her ds. I hope she does get a meeting with a paed to investigate further. Like some others have said arming yourself with knowledge might help if she does get autism diagnosis.

Fio2 · 11/06/2004 08:31

I am going to stick my neck out here, but just because he has no speech and looks vacant doesnt mean he has autism at all, it could be a great number of things. Your friend needs to ask her health visitor to refer her to a development paed so he can have a full assessment. This usually involves lots of tests, also. Ct scan, eeg, chromosome tests etc, to rule anything in or out.

My daughter has a global development delay and we noticed she was slower say around 12 months maybe before, but she was our first and I was very niave. I met a lady who had a son who sounds very similar to your friends ds and is on the autistic spectrum but he has a chromosome disorder aswell. It really needs investigating further.

Please dont show your friend my post, I know EXACTLY how she feels. It is a bloody awful time and I know that. But you cant just assume he has autism just because he doesnt speak. He needs to be seen by a professional and he needs to be reffered for therapies because as we are all aware here the waiting lists are loooooooooooong

CupofTea · 11/06/2004 08:53

This reply has been deleted

Message withdrawn

Fio2 · 11/06/2004 09:02

sorry cupoftea, I just thought I was being insensitive but her sons 'delays' need to be dealt with. As you seem aware of! I do know how she feels though, as I have said before

Yes global delayed affects everything. It means they are delayed in ALL areas of development. Our daughter was slow to sit, crawl and walk and it was when she didnt walk at 18months we were reffered to a development paed (although concerns were raised earlier than this) We had the battery tests as I said before but nothing abnormal showed and we still havent got a formal diagnosis for our daughter (she is 4 now)

As she has no diagnosis we have no idea what our daughter will be like in the future, but I am pretty sure she will never catch up with her peers.

Has your friends had problems in other areas of his development than?

CupofTea · 11/06/2004 09:10

fio2 - thanks for that. Does she talk much?

My friend's son sat, crawled and walked early. I think he walked at 9 months. It seems his main problem is with communication

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Davros · 11/06/2004 09:14

My understanding is that autism IS genetic. I have heard of studies on twins and siblings showing that having one with ASD means a much higher chance of the other also having ASD. IYSWIM, siblings have a higher chance than the general population, non-identical twins have a higher chance than siblings and identical twins have an even higher chance of both being on the spectrum. I think the theory is that outside factors and environmental issues are triggered due to a genetic predisposition in the first place. I personally know of about 5 sets of twins, both on the spectrum although at different stages and a few families with siblings on the spectrum and then in my own family there are 2 other people on the spectrum.


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Fio2 · 11/06/2004 09:15

she has single words and is doing some 2 to 3 word sentances now, only basic things like bye-bye daddys house, that sort of thing. She also uses makaton and pecs which is quite common with all children who lack language and speech.

You sound a very caring friend. I know how you feel though I have a similar friend who wont admit there is a problem with her son, although he does receive speech therapy now. But her husband was adament 'there was nothing wrong with him!!' he still hasnt got any speech at over 3. I just have no idea how to braoch the subject, I am just hoping her speech therapist will push things in the right direction for him.

Is your friend worried? has sought any help yet?

Fio2 · 11/06/2004 09:17

Davros I think there has been found to be a genetic link hasnt there?

I have two friends, 1 who has 3 autistic sons and one who has 2. So there must be some truth in it.

Jimjams · 11/06/2004 13:43

There is definitely a predisposition to autism (genetic) but many many genetic factors are influenced by environment. Best example is PKU- give children with PKU phenylanaline and they will have mental retardation (awful word?! learning difficulties- severe ones). Give them a phenylanaline free diet and they will be perfectly "normal". Just like to point out the difference as I think the govt likes to muddy the waters a bit (with respect to vaccinations etc- no reaosn why there shouldn't be a genetic predisposition to autism following injecton with mercury for example- probably highly likely given Walsh's work on metallothionein).

But yes ds3/dd is definitely at higher risk of autism than Joe public. And something I know dh has talkeds to his sister about (pregnant with her first-especially as she has type 1 diabetes,)_

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