ds1's teachers think he has ASD

[Greensleeves]

have been advised to post this in special needs - hope nobody minds.

I had a meeting with ds1's teacher a couple of days ago about his behaviour/progress, he has had an IEP since nursery which relates partly to the need to adapt the literacy curriculum a bit because he can already read, but is mostly to do with social interaction difficulties.

I said I was concerned that his behaviour was deteriorating (much more flapping/bouncing/squeaking/inappropriate behaviour than previously). The teacher agreed and told me that his interpersonal relations with his peers were not good at all - he approaches other children inappropriately (no idea of personal space, shouts in people's faces even when being friendly etc), is unable to take on board their reactions or wishes, can be verbally unkind without seeming to realise it etc. I said that he had been telling me nobody likes him and that he had no friends. The teacher told me that that very day he had said "I hate you!" to another child and then been surprised when that child didn't want to sit with him. She said that he was not aggressive, liked the other children, wanted to please and was not the worst behaved child in the class - but that he was very hard work (he is very difficult to control when he is in one of his twisty flappy squealy moods, even if all the other children are sitting down and the adult is cross - I know this behaviour very well from home) and socially his progress is very limited.

The teacher then shocked me a bit by saying "we really feel that our strategies are running out and the time has come to bring in someone from outside". I said (nonchalantly, because I didn't want to put words in her mouth) so would you say in your opinion - because you know more children than I do - that this is the result of some sort of emotional trauma or disturbance, or something intrinsic to Greencuff's personality?". She said very definitely "In my opinion this is not nurture, it is nature, and whatever parenting you had given him Greencuff would still be as he is". She then proceeded to tell me that she would like my consent to immediately talk to the senco and arrange assessments by ed psych/paediatrician. I said (again, trying to sounds in the dark, so as not to influence her response) "So are you thinking he ahs a particular condition, like - I dunno - something on the autistic spectrum, or ADHD, or something like that?". She said (looking a bit surprised) "Well, yes, actually I think in my opinion that he does have some form of autism, obviously I'm not a specialist but I do have some experience and I had an autistic child in my class last year - he wasn't identical to Greencuff, but there are some significant parallels". She then said that the TA who also had experience agreed with her and they weren't in much doubt. Then she said lots of nice things to make me feel better (don't blame yourself, there's lots of halp if we flag things this early, etc). She gave me a copy of the referral form they use, to take home and show dh, and said she would set things in motion immediately.

The next morning I went in and the new teacher (current teacher is going on maternity leave in 2 weeks, so new teacher is kind of job-sharing atm to get the children used to her) asked me very kindly whether I was OK. She said current teacher had spoken to her last night and told her what was happenening with ds1. She also said "I have been teaching for longer than I care to remember - I taught that mum over there - and I have thought since I met Greencuff that he was autistic"

They asked me to go to my GP and let him know that they would be writing to him to ask for a consultant paediatric referral. They also have already spoken to the school senco and she is going to assess him briefly herself and then get an ed psych to assess him.

I did go to my GP and he didn't bat an eyelid at the suggestion ds1 might have ASD - I ran the idea by him myself six months ago when the nursery first suggested the IEP, but the nursery staff weren't suggesting ASD so I decided to leave it until he started school and see what happened. The GP at the time seemed surprised that they hadn't considered ASD - his words "bright child, obsessions, social/communication dificulties - it's an obvious thing to at least rule out".

They are all behaving as though he deifinitely has it and it's a fait accompli - how seriously should I take it? I didn't feed them the idea, they had already had it, separately from one another (new teacher said she hadn't mentioned her concerns to anyone).

I know it will take ages to get the referral, and I have heard a bit about how long and horrendous getting a diagnosis is - can anyone give me a better idea of what to expect? And am I jumping the gin by being in bits about this, even though I had had my own suspicions for years and shouldn't be surprised?

Sorry this is a bit of an epistle.

I'm here.

Sorry you're going through all this, Greensleeves.

I think that the teacher was wrong to try to make a dx in the way she did. She isn't qualified to do so. By all means she should be telling you that they have concerns and that ds could benefit from an assessment etc but saying she thinks he is autistic is a step too far.

I have two boys with HFA (7yrs and 5yrs). The system for getting a dx is fairly straightforward here but every area seems to have its own system. The way it works here is that a child is referred to the Paed. The Paed spends the appointment talking to the parents and asking questions while also observing the child. If the Paed thinks there might be a problem they make a referral for a multi-disciplinary assessment. The child sees the SALT, OT, Physio, and the Child Psych. They set out particular activities (puzzles, books, toys) to see what the child does with them. They will also ask questions and possibly even fill in a questionnaire with the parents. At the end of the assessments there is a big meeting where they all get together with the Paed and the parents to discuss their findings. With ds1 the Paed told us at that meeting that he had ASD. With ds2 it was a little less straightforward and so the Paed said that he wouldn't make his previous provisional dx official just yet but that ds2 would receive all the help that he would have been given if he'd had an official dx. The AS dx was given about a year later.

IME even when you have known or suspected ASD for a long time, it still feels horrible when someone else acknowledges that it is entirely possible. You sort of half-hope that they'll say "Don't be silly. He's fine!" while at the same time half-hope that they will see your child the way you do and realise that you're not just being neurotic/paranoid or any of the other labels you give yourself when you start to wonder about your child having SN.

It sounds as though your ds' school are doing all the right things (with the exception of trying to make a dx themselves). The right school can make a big difference IME.

Agree with Electra that he sounds HF, or even Aspergers as he sounds like he has normal IQ, normal speech but some social and behavioural issues (which is actually a pretty good definition of Aspergers). If he is diagnosed, it is a blow, there is no denying that, but like Electra says it means you can get help and he can stop being just labelled "naughty" but can have his needs understood. The fact that he is coping in school by himself, albeit with a few problems, is a very good sign. My ASD DS would not last a minute in mainstream if he didn't have a full time shadow! I do know that sinking feeling you must be having, deep in your stomach, but there is hope and in fact my HF ASD step-daughter is now coping in a grammar school alone, coming top of her class in things like Mandarin and acting to all intents and purposes like a NF kid, with just a few conversational oddities now and again. Aspergers and HF ASD really can respond to the right treatment, and to mainstream education. Anyway, big hugs to you!

thanks folks, that gives me a bit more to go on.

I don't think the teacher was wrong to give her opinion, I did ask her to. I think it's possible dh and I are jumping the gun in our reaction a bit, given that he hasn't been diagnosed, he's just been put on the road to dx. But we are feeling pretty much definite about it - largely because I had always been half-convinced anyway, since he was really tiny, and because two teachers and the GP all came to the same conclusion without conferring.

Does anyone think ds1 won't necessarily be diagnosed with anything? I think that would make things tough at school, they have implied that they really think it's necessary.

The new teacher had the class this afternoon an d came out to tell me he had wet himself again (every day this week, twice some days) and also to tell me that I must take it one step at a time, and try to keep a sense of perspective, but that they really feel he needs to be dxed as soon as possible.

My sympathy! You may have had worries for years but its still a shock when someone else expresses similar concerns. It makes it all more real!
Teachers have a professional duty to recognise needs and strengths in their pupils and take appropriate action - speaking to you then the senco to ask for ed psych involvment. It is not a dx at this stage ofcourse -but it may be the beginning of getting suitable support in school. I would ask the Gp to refer greencuff to the developmental (or community) paediatrician to consider assessment for asd, as it may save time, and give you all a clearer picture sooner.
Your child is still the same lovely child he has always been, any dx that comes is there to help the people around him to support him properly.

He's just had a hour-long screaming fit and then handed me a note that says Go Away [aaaaargh emoticon]

Ah - not so lovely just at this moment then! In need of the half term break perhaps?

Greeny- at least he doesn't attach those notes to balloons then float them over to the neighbours like ds1! (although we all wish she would of course).

Have you ahd a look at the national autistic society website, and the triad of impairments? gives you a fairly good idea i think- although IIRC we discussed this all a while back, is that right?

It's a great shock even suspecting something is wrong with your child, but it si the first step to helping them. Don't go much on the SENCO assessment- beyond a brief look at what may help him at school she is not qualified to assess. Go on your knowledge of him, and what the Paed says (Ed Psychs employed by LEA- some are great, some are so restricted by finances that they are worse than useless).

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greensleeves at reading your post, it is very hard to go through the diagnosis process, hopefully with the help of the teachers your ds will get the support he needs.

I saw the Ed Psych this morning, via a slightly insidious route - he happened to be in this morning at the nursery I work at, observing another child. The nursery is across the road from ds1's school, so I thought it was a reasonable bet he's the ed psych who deals with that school too.

Anyway this EP saw ds1 a year or so ago when he was at nursery - he was again in observing another child and happened to 'notice' ds1. He asked the teachers about him and said he would do a brief informal assessment of him but not write anything down (this was around the time his social interaction issues/behaviour reached crisis point at this time, and his teacher knew I had concerns)

When I went in this morning, I noticed he was there and asked ds2's nursery teacher whether she thought he would remember ds1, and although it's a bit cheeky would he be willing to have a brief word with me. If you don't ask, you don't get!!! She came back an said he did remember ds1, and would speak to me unofficially.

so I managed to get 15 minutes alone with the bloke in the office, during which time he explained the diagnostic process to me, and asked me lots of very searching questions about ds1 and his early infancy and the nature of the concerns I/the school have had about him. He confirmed that he is the ed psych ds1 will eventually see, when the process rumbles its way to that point.

I HOPE that having seen me/ds1 before the eventual official assessment will have helped... I am kind of dreading the whole process, I hate hospital appointments and tests and being interrogated, I think I am going to find it all quite bruising.

Thanks for all your input and support, it is very much appreciated.

also his nursery teacher made a face and said "Hmmmm, well, all 5yo boys are like that" when I told her what the school's concerns were! I don't agree with her tbh I DO think he has ASD or something similar - but it shows nothing is really clear-cut [shoots self in head]

I hope nobody minds me just splurting my thoughts indiscriminately here, it's sort of like a diary where you can decant all the useless stressful crap - but there's the added bonus that somebody might read it

I am reading!

and kind of know what you are going through, my ds is younger, he will be 4 soon and has been concerning professionals for the last two years...

you sound pretty on the ball and well done for speaking to the ed psych, not sure I would have the confidence to do that, it is great you got an idea of the process.

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Also reading, Greensleeves! I so agree with oops - it's reaching that point when it's not just you but other people who think the problem is big enough to pursue.
DS is 9 now and we're getting used to the fact that the labels haven't changed our son a bit; but the care and support since his DX have been a lifeline.
We went through GP and Ed psych and Camhs - took about 6 months for the referral - had the diagnosis the same day. It was rather obvious, just a question of where on the spectrum really.
A friend described the diagnostic process as feeling like a mental smear test! She was right! When you get to it, do make sure you take the day off work if you can - you'll probably be too tired to cope afterwards.
And when someone says "Aren't all boys like that?" I say "Yes - but does yours have a sock drawer full of elastic bands, and would he know if I removed one?" "Does yours need to count the red floor tiles in the shopping centre or will have a 2 hour tantrum and wet himself?" They usually shut up!!
It's the friends who will offer to sit for me, knowing what will happen, who I love!

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I have got to tell my dad about all this tonight, he is going to be really (MIL is gutted, and she is a very "pull yourself up by your bootstraps and snap out of it" person, she doesn't even believe in depression, so I was expecting her to say "Hmm, well he hasn't been diagnosed yet, they're probably just wrong")

I know I'm overreacting and being a bit melodramatic about this - so early on in the process - but I do need to tell my dad because he will wonder why I keep running out of the room and making absent-minded remarks.

Any tips from anyone on how to talk to him about it gently without making it sound much worse than it is? He worships the boys, he'll be really floored by this I think (even though we've discussed it in the past - I had no reason at all to be shocked, but bloody hell, I am!)

I would firstly tell him about the teacher wanting to talk to you and go from there...

I can't really give you any good advice, I have really struggled to tell people, to the point where I avoid people, so I don't have to talk about it,.

one friend keeps asking how my ds is doing in quite a pointed way... because I don't have a dx, I say he is fine.

I would tell the people, who care and really matter to you ,what you are going through, so they can support you and share it with you and hopefully learn too.

Greensleeves hope you dont mind me intruding on your thread but I would really like to ask aefondkiss a question as my ds is the same age as hers. My ds is 4 in july he is in nursery and is being monitered by nursery staff as he is very hyper and struggles socially just wondered what your ds is like. Sorry to barge in like this but I have worries about my ds.

Greeny - ~I agree with aefond kiss. And be - if not ruthless, not too quick to worry about other relative's feelings - give your own little family unit priority.

No words of wisdom for you Greensleeves, but I'm glad you spoke to the EP and have a bit more understanding of the process involved in the assessment.

Keep posting - there are lots of us reading and wishing you the best.

hi laughalot

language/communication is the thing that got the professionals concerned about ds..he has been seeing the SALT since he was 2.3... possible language disorder, salt isn't diagnosing anything until the Paed and consultant psych see him and give him a dx.

on the one hand my ds is lovely, happy, loving, cuddly, makes eye contact, tries to communicate...

but you know what makes it seem like he has some kind of asd/developmental problem, is that he is not like his peers,... he is the odd one out.... seeing him with other children makes me realise that.

he has a lot of echolaic language, though his speech is improving and, I think he has started constructing short sentences, he takes me to things instead of asking for things, he is, sometimes, interested in playing with other children, but has no idea how to connect with them, nor them with him, mostly....

he holds his hands over his ears when he doesn't like something, he jumps a lot, sings in a high pitched repetitive way, doesn't like people singing to him, noise is one of his sensory problems... not really comfortable with saying all this in some ways.

when he gets hurt he rarely cries, he is beyond stubborn, he has his "own agenda" according to SALT, it has to be his way or no way, and he is quite happy in his own world.

he walked and did all the physical stuff within "normal limits"

not sure if that helps?

have you spoken to your gp? hv? about concerns.

Is the Ed Psych AW??? If so you're in safe hands. He's the only Ed Pscyh I've met from your local authority but he's also the only ed psych I've met ever anywhere who has any idea about ASDs

To be honest aefondkiss I went with my dd the other day to her 12 month review at the hv and took ds and she said she would come out to see me as he just went nuts in there he was running around, knocked everything of her table, ran off and she had to chase him. He communicates very well but is extremely hyper and also struggles with friendships but they have said that could be his age but im not convinced. He tends to push other children or be right in there faces . He can let out screams occasionaly for no reason. I keep trying to push it to the back off my mind thinking it will get better but it isnt. Thankyou for sharing your personal thoughts with me it has helped.