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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

Just been told by peadiatrician that my 18 month old is probably autistic, what now...

43 replies

JustPondering · 25/10/2012 14:47

Hi, I have just had an appt with a peadiatrician about developmental delays in my 18 month old, she thinks he is autistic and he may also have to have some special shoes as his ankles roll inwards, he is flat footed and sporadic toe walking.

She said they will have a first steps meeting that I don't need to go to but I can if I like. I will be contacted by their special needs pre-school who will be coming out seeing DS and also I will be seeing a physiotherapist and that the speech therapist might want to see him but he may be a bit young yet.

What happens now once everyone has been out and seen DS? I'm a bit surprised really as I always thought my 6 year old was autistic, he has a language disorder and other problems but I wasn't so sure that DS3 was.

OP posts:

bialystockandbloom · 25/10/2012 15:24

Well, I am sorry, you must be in a bit of shock.

18 months is very young to dx, though of course is possible. If you are happy to give more info and don't mind me asking, what is it about his behaviour/communication that suggests autism to her? Or to you?

It will probably be a long process to dx for sure, maybe 6 months or so, especially in a child that young as I'd expect there may be some 'wait and see'. However, it is great that you have been alerted so early to a possible difficulty as there is much you can do to help/change the developmental pathway this young.

The only other thing I'd say is definitely go to the 'first steps' meeting - and in fact try and go to every single meeting that happens concerning your ds. It really is not a good idea to let others make decisions about what happens, what support he gets etc without you there!

EllenJaneisstillnotmyname · 25/10/2012 15:34

What a shock for you! My best recommendation for a child this young is More than Words. Something you can be getting on with while you wait for the slow wheels of the state to turn.

Original poster

JustPondering · 25/10/2012 15:37

Hi, she played with him for a bit and tried to get his attention a few times, and noticed that he didn't respond.She did some pointing and tried to get him to play with her but he wandered of and played with a car in a a corner. He can say 'car and 'choo choo' and that is all. He flaps his hands and walks on his toes but only barefoot and not all the time, gives eye contact to me at home but to no-one else. He only plays with cars or trains. And he gets mad when someone tries to talk to him, no hugs or kisses. Can't point or wave. That's all I can think of.

She also took my family history, and noticed there was aspergers and depressive illnesses in the family and language problems.

She said from what I had told her and from what she had seen today that she thinks his behaviour is very autistic although she stressed that she can't be sure.

I won't see her again for another 4 months but will be seeing the other professionals in the meantime.

I will go to the meeting if that is usual, I just wasn't sure whether that was what normally happened.

I expect a long wait at this age, I expect much longer than 6 months to be honest

I wonder what the special needs pre-school will do, will they be coming out to play with DS?

OP posts:

Original poster

JustPondering · 25/10/2012 15:41

Will definitely look at the more than words book, it has been suggested to me not long ago so I will have a look on amazon now, thankyou.

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EllenJaneisstillnotmyname · 25/10/2012 15:43

If you can get it cheaper, please do try, but Winslow are often the cheapest source. www.winslow-cat.com/more-than-words.html

EllenJaneisstillnotmyname · 25/10/2012 15:45

And they usually have it in stock! (Not a Winslow Press employee! )

Original poster

JustPondering · 25/10/2012 15:54

Will definitely order the book next week, won't do any harm if it turns out he is not autistic after all.

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EllenJaneisstillnotmyname · 25/10/2012 15:57

That is true. Some of the best advice I've seen is to treat a possibly autistic DC as if they are autistic. It will do them no harm whatsoever and you could steal a march on their development.

The other thing to research, when you've got your head around it, is ABA. I've no experience of it but others on here swear by it, and I've learnt to respect the posters on here a lot.

BackforGood · 25/10/2012 16:08

I think this varies, one HA to the next, but here, if they believe it is worth looking at whether a child has social and communication difficulties - which may, or may not be autism - then they have 2 people from the multi-disciplenary team visit at home and/or in Nursery if that's where they spend quite a bit of time, to talk to you/staff and to observe a little, then they invite you in to a session once a week over about 4 weeks. They go into a place set up as a nursery / playgroup, but all the adults are specialists - so ther will be a SaLT, a Nursery Nurse, a physio, a teacher, maybe an OT in there playing with the children (there will be 4 or 5 at each session) to try to establish as full a picture as they can. After that, they all get together (the team from the room, the Paed., any SaLTs or other specialists who have done any separate assessments) and try to decide if they are able to give a diagnosis or not.
As I say, I don't know how common this is across the country, jst what happens at our CDCs.

EllenJaneisstillnotmyname · 25/10/2012 16:11

That sounds like a very good system, BackforGood. Perhaps better than average, though.

Original poster

JustPondering · 25/10/2012 16:26

That does sound very good, they haven't mentioned visiting at nursery yet although I am sure they will.

I am just really surprised that it has happened so quickly, I was sure I was going to be told to bring him back when he was older. Or that I was maybe being paranoid.

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EllenJaneisstillnotmyname · 25/10/2012 16:36

See it as a positive, JustP. You will hopefully be getting some appropriate support more quickly which can improve your DS's prognosis no end. x (And you are not seen as a rubbish parent )

Liliuk · 27/10/2012 18:15

I feel for you, these are very difficult times indeed. Just try to remember any interaction is good interaction, so anything that your child like doing with you (tickle, etc) do it quite intensively and wait for him to show a sign he wants more. I would really recommend ABA but that is quite expensive. Tiptoeing is sign for seeking propioceptive input (ie body awareness) so a trampoline if you can is good, games like pulling your child on a blanket on the floor (lots of fun so a good way to also have joint interaction), massage, etc... The verbal behavioural approach book by ms Barbara is a good and clear read. I have an autistic 4.5 years old, quite severe but has made progress. It is possible with the right support. all the best,

schobe · 27/10/2012 18:38

Yes, I always say this, but I would recommend ABA too - especially at such a young age. But yes it is expensive and a tough battle to get help from the authority for funding. Is it wrong of me to be jealous that you're onto this while he's so young? That is most certainly a positive if you feel able to appreciate it.

schobe · 27/10/2012 18:40

And be very wary of all the "oh well he's very young yet, let's wait and see him again in 6 months". This is either well meaning or translates as "jolly good, we don't need to do anything for you yet".

Liliuk · 27/10/2012 19:57

Yes, agreed with schobe. trust your instincts, waiting is not the answer. and it is not because they are professionals they know best.

CouthyMowEatingBraiiiiinz · 28/10/2012 01:58

I have also had a Paed appt. where my DS3 was dxd 'hyperactive', possibly ADHD but too young to diagnose, and Markers for Autism.

The things said by the poster above are what will happen in my CDC too (now, never used to be this good, I have older DC 's with ASD/HFA).

He has a SALT appt with 4 weeks of his Paed appt. And blood tests to rule out anything biological.

I am under no illusions that if the speech issues are noted by the SALT, on top of the social issues noted by the Paed, on top of his not liking change, on top of his hyperactivity, on top of his irrational fears (screaming abdabs at the shapes on Mr Maker, anyone?!), that he will get an incredibly early diagnosis of Autism and ADHD.

He is 21months. So not much older than your DS3.

There are people here going through it too.

schobe · 28/10/2012 08:39

I don't know couthy, those bloody shapes are creepy.

Original poster

JustPondering · 28/10/2012 16:07

Does it mean that because the pead can see it so early that the autism is likely to be more severe? I mean he doesn't seem severely autistic to me but I have been going back and forth to the peadiatrician with my 6 year old for years because I don't believe that what he has is a language disorder only but the peadiatrician doesn't seem to see it with him as he is very sociable so I am very surprised for them to say yes it looks like autism.

Does having 2 words now mean that he is likely to be verbal?

Also I am not sure if he has joint attention, he brings me toy cars and places them in my hand but he doesn't look at my face while doing it, he just puts them there, wanders of then comes back for them, without looking at me. So is this not joint attention then? He bangs toys on his head and then looks at me to see if i have noticed, is that joint attention?

So many questions.

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schobe · 28/10/2012 16:56

No it definitely doesn't mean he is going to be more severely affected. There are so many things that could be at play here:
(a) you've got an excellent and on the ball paed who is not trying to kill time and fob you off.
(b) the toe walking and ankle issue have just given a useful physical signpost that other children with ASD don't have - does not mean he will be severely affected.
(c) you have an over-zealous paed who is being better safe than sorry - you can't lose by starting some early intervention so I would welcome this even if they're wrong.
(d) if you get some good one to one interaction going with him at such a young age, he will actually (imo) develop way beyond what might have been if you hadn't or if you had started much later.
You describe some excellent things your DS does - relating to you as a person of importance. You can build on these and start developing some fun one to one activities that he gets a lot out of and finds rewarding.
Do get the 'more than words' book even if you can't stretch to an ABA provider.

Original poster

JustPondering · 29/10/2012 14:34

I am definitely getting the book, DS's dad is getting it this week, cannot stretch to ABA though, I think I saw on another thread that it costs 13500 pounds!

I wonder if I could do the techniques myself though, I will have to look into what ABA actually is.

I was going to get him the little people garage for christmas but now I am wondering if he will actually play with it, he has the train set, but he only plays with trains but not the track, same with the airport, he doesn't even look at it. He only really likes realistic looking toy cars and trains. Is he likely to play with the garage eventually? I may get him a trampoline instead, might make him a bit more steady on his feet.

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schobe · 29/10/2012 14:48

Trampoline is great as you can get on it too and have lots of to and fro games together.

Yes you can definitely do ABA type activities yourself. This book is great, sorry a bit pricey.

What are his two words? A good start is with them - encouraging him using them lots and lots to get things that he wants.

Original poster

JustPondering · 29/10/2012 14:52

His 2 words are car and choo-choo predictably

OP posts:

FrustratedSycamoreBonks · 29/10/2012 14:59

Can you get on an earlybirds programme?

FrustratedSycamoreBonks · 29/10/2012 15:03

Also pecs (or just pictures, doesnt need to be pecs) and sign supported English are good for encouraging speech. And is a good means to communicate.
Games that are good are ones that encourage interaction and turn taking with another child or an adult. And things that require an action to get a result.

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