aspergers pre-schooler- where next, and what support do you get?

[rosiejoy]

I originally posted this in 'special educational needs' but AngryWasp suggested I post here instead (thanks).

Just a copy and paste job I'm afraid, can't face having to rewrite it all!

Ds is 3.6 and goes to preschool 2 mornings a week. He has only been going since Januray and we are about to move so the preschool leader asked me to come in for a chat.

We discussed all the things she had noticed about him, and pieced together with what we'd noticed at home are both convinced he has aspergers. (although of course she was very professional and wouldnt commit to a 'diagnosis' as such)

So......am just wondering what next?
We move at the start of next month. I dont have any preschool lined up for him, but I wont have a job to go to so am completely open minded about what he is going to need from me. I currently work part time (16 hrs over 3 days) and he is very happy at the childminders he goes to, so I really feel if I can find the right place for him he will be fine.

I think what I am really wondering is where do I go from here? If it was down to me I would avoid gps and the whole medical route, and persue this through the education system ultimately. He attends a preschool at a children's centre now, and if we were staying I think he would have access to support through there, but there isn't an equivalent place where we are moving to.

How did others go about getting a diagnosis- and what for if that's not a stupid question? ie. what did the diagnosis achieve? what sort of setting do your children attend, do they get an 'extras' eg. at nursery, or preschool, or outside help?

thanks in advance!

You'll get loads of more complex replies Rosie, but in essence, if you get a diagnosis its SO much easier to access support. Getting a diagnosis doesn't mean 'the medical route'. The education system will still be your focus. Good luck.

wow thanks for such a quick response!

DS1 has AS, this was diagnosed in the term he started school. I would say a few things about diagnosis:

Your current preschool sound good and sympathetic and knowledgeable, but others might well not be. A dx is something you can use to explain your ds to the ignorant (and there's lots of them around).

As Shells said, getting a dx makes it so much easier to access support. It is possible to get support for children's needs without a dx but it is a hard fight (though there are some people on this board who have gone down this route for very good reasons).

I have found that ds1's problems have increased as he gets older, because the developmental gap betwen him and his peers has opened up (he's 6 now but there's a real gap now whereas there wasn't when he was 3). Getting a dx and early support is key to stopping that gap becoming too much of a gulf.

As he gets older, a dx can help him make sense of why he is different from his peers.

Children with AS are normally supported through the education system but to get the help he needs (especially if he needs a Statement) you need to have as much information and ammunition as you can. A dx can help here as you will have professional opinions about his needs.

So I would go to your GP, explain your concerns and ask for a referral. I would write down all your concerns and all the preschool's concerns, and try to use the scenario of 'every day is like the worst day' when you describe him (I know it's not, but you have to do this to show that his difficulties are real). Do not leave without getting a referral and do not be fobbed off with 'why don't we wait and see how he gets on'. And go on your own the GP doesn't need to see him to make the referral and it will be easier to discuss him without him there.

hth

The diagnosis might not make an enormous difference at the moment because he is happy and settled and coping well.

However, when he starts school it may be a very different matter. Anxiety can be a problem with Asperger's and this can raise it's head when the child is in a large, busy, noisy environment. Also starting school is a big change which may also cause him some problems.

If your son does need some extra support he needs it to come quickly. Getting the diagnosis now would mean less of a wait to get the support if and when he needs it. A dx can take a long time and the wait for support could be very frustrating and prevent him from making progress.

I'm not saying he will need extra support but if he does you won't want to wait.

You will be able to manage without a dx if you are very VERY well resourced with knowledge and finance, in that you will be able to suppport your child whilst 'opting out' of the system.

For the majority the only 'evidence' you will have to zap the ignorant that come into contact with your child is a diagnosis.

Bear these things in mind.

1. A diagnosis is easier to get when they are younger because they have the 'purer' form of whatever it is which is not complicated by associated depression and they haven't learnt to compensate.

2. A diagnosis can take months if not years due to waiting lists for waiting lists.

3. A diagnosis of a good many things (particularly autism) can be refused when you eventually get there so you benefit from YOU knowing but no label.

4. A diagnosis can be removed when no longer useful.

5. Some of the support that a Dx can help with: Access to Earlybird course. A higher rate Disability Living Allowance. Respite packages now or in the future. Invitations to Speech and Language More than words course. Access to autism outreach. A better chance of getting a statement when you need one.

However, always remember that just because something is offered it isn't necessarily appropriate so don't always accept everything and be grateful. That will be a waste of time for everyone.

hth

Thankyou all.

I am not as concerned with labelling as dp. He seems to be going through denial really. The way I see it, it's likely to be an Aspergers leabel or a 'naughty boy' label (or even 'bad parents' label!)

Some really great advice here thankyou. It hadn't occurred to me I wouldn't need to take ds with me to gps.

I definitely don't have the finance to opt out of the system although I have a very determined character and if I felt the school system would harming him I would find a way to be at home with him.

This is all for the future, he doesn't go to school for over a year. But I really felt, and even more so now I've read your responses, that if I didn't deal with it now the gap will only widen.

Superficially it seems that his language skills are what he needs help with currently, although I have always suspected that is a system of something else that is going on for him. I don't think he has it very severely, he enjoys being around other children, and he makes eye contact with me and dp (although not so much with other people). However he does have obsessions and compulsions. I'm quite laid back about it, but I suppose school is when that sort of thing becomes a problem.

sorry, symptom of something else!

rosie

There is a lot to learn, and others here might disagree with me on this but IF you seem to be heading down the asd route, make sure you get a diagnosis of asd and nothing more. Not HFA and certainly not aspergers. You can use the excuse that he is too young yet to label too narrowly as no-one knows how he will respond to therapy.

There are a few reasons for this.

1. If you get a statement it is very difficult to open it again to negotiate what is in it. However a 'new' diagnosis will make this happen i.e. getting the more specific 'Aspergers'.

2. If you get HFA or Aspergers on the dx, lots of agencies who get to set their own criteria for support refuse to see the higher-functioning children, believing WRONGLY that they are in less need of support.

3. Aspergers 'might' be removed as a stand alone diagnosis and so your child will be labelled with something nonsense.

You sound like you have an excellent attitude tbh and your ds is very lucky to have you. The best outcomes for children are usually in families where the parents have accepted quickly as they are more inlcined to find support and 'solutions' for their child.

thankyou so much, great to have this info and benefit from others experience.

One question- I have seen so many different -de-abbreviations (if there is such a word) of ASD

When you used it does it stand for Autistic Spectrum Disorder? That would make sense to me because it would include everything.

Part of me thinks I could help him a lot at home eg. with dietary changes but I don't want to start doing that til I've got some help secured for him, because if he improves 'too much' might not be eligable for help.

Thankyou for your kind comment angrywasp. I was talking to my dad last night and trying to explain that although I've always known there was something 'different' about him I never felt uncomfortable about his behaviour, just apprehensive about other people's reactions to him if that makes sense?

Also, I had another baby when he was just 15 months old so fighting his personality to try and make him conform was never an option, just had to go with the flow and whatever worked for us/him.

Yes, that is what ASD stands for. Some people prefer ASC (condition rather than disorder) but it isn't as widely known.

There are another couple of posters on this board atm in the very early stages too so you might want to seek them out for support.

wrt helping him, the sooner the better tbh. It might help if you keep a diary of what you do and the outcomes so you have evidence that it was YOUR input and not anyone elses that led to any progress.

In fact it will do you very well to keep a record of all contacts with any professional or 'lead' with the date and details to ensure you get anything you were promised, and that you have details of information that you aren't ready to explore just yet but might want to in the future.

hth

Hi rosie - I have a thread going at the moment where I'm exploring some of the same issues as you...

Can I just ask - what were the things that both you and the preschool leader had both noticed with regard to his behaviour?

Hi abitworried, will have a look for your thread...

Ok, in no particular order here....

I got pregnant when he was 6 months old, so to be honest can't remember a lot from before he was one, bit of a blur!
Initially was just a feeling that he seemed to be playing differently to other children. When he was 16th months old he started drawing. I was pleased cos I had a newborn at that point. But he would sit for hours at a time drawing. Lots and lots of different colours, but he cover the whole sheet of paper in straight lines. You could see he was concentrating very hard, and doing it with purpose. Just as quickly he got bored of it and I can't get him to sit and draw at all now, he hasn't since he was 2.

Um, other things, he got VERY into puzzles at one point. Obsessional really; wasn't interested in any other toys, would repeat the same one for days, then move on to another one. By the end of that he was doing puzzles that said age 4-8 on the box (he was 2). Again, it seemed as though once he'd 'mastered' it, he lost interest and now he wont play with puzzles. There have been many other interests (although I forget what now) where he has done this.

Eye contact has been a bit of an issue. Not with me. He will look me in the eye and give me cuddles, but he has only recently started doing this with dp, and my mum says he has only ever looked her in the eye a handful of times. However I have noticed that he often wont look me in the eye if I'm trying to get a response out of him or communicate something to him. I know anybody could say there young child wont look at them when they are trying to get them to do something, but this is consistent not just when he doesnt feel like it.

At the moment he likes to do what he calls 'jumps'. Basically he has to stand on or jump on every single man hole cover he sees. Have managed to get him to agree that he can only do it for the ones on the pavement. The day after the woman from preschool had rung me we were walking into town and I realised the pushchair was about to go over one of these 'jumps' so I kept quiet. We got to the end of the road and suddenly ds burst into tears. He can't really talk well enough to explain but I knew it was because he could'nt leav the jump undone so I had to let him run all the way back and put one foot on it!

He often appears very clumsy, and I used to be constantly telling him to walk in a stright line, but one day I noticed there is actually a pattern to his footsteps even though they appear random and clumsy.

The first time my mum to him to a softplay he didn't even look at the play area and spent the whole time trying to get behind recpetion to play with the cctv!

I don't know, these all sound silly on their own. But to me it's the bigger picture, more about the nature of his character and his interests/skills and weaknesses.
For example, he is now exactly 3 and 1/2. His sister was 2 at xmas and she can now talk better than him. She tries new words, new senteces structures, talking about new ideas using the words she's got or asking me the words for new things. Ds sticks the phrases and contexts he has already learnt.

When I went to see preschool his language and social skills were the bit they'd noticed the most. He appears to have a really wide vocabulary, but actually it seems like he's just memorized lots of words and when to use them without actually undertanding what they mean. She also mentioned other things he does that loook like he's being naughty, but she thinks he doesn't actually understand his behaviour is inappropriate. She also mentioned him 'zoning out' which he does a lot at home.

Have you heard of echolalia? This is what he does when he zones out. He will become obsessed with one book or dvd and watch/read it endlessly til he has it memorised, then he will 'play out' the story, repeating the words (although he often gets the general sounds right but the words are wrong, so this convinces me even more that he isn't really understanding language.

I definitely agree he has an excellent memory. He became interested in the alphabet a couple of weeks ago, he now knows all the letters, lower case and capitals, and wherever we are he has to point out every letter he can see.

This feels like a really long and incoherent post sorry. Need to sit down and write it all down properly but I wanted to respond to your post.

How are you coping with it all? I'm guessing your name is connected to this?

Thanks Rosie - that must have taken a long time to post!

Yes- my name is associated with this (although it's a namechange I think I made originally for something else?)

I'm in a different place to you I think - just trying to work out if DS2's behaviour merits going down the diagnosis route, or whether actually

a) it's the end of a long and stressful school holiday
b) he's young for age, and will catch up at some point
c) I am just over-worrying/ suffering from PMT !

Certainly my observations are more subtle than the ones you describe, and I probably wouldn't worry except for the fact that I have a sense that DS2 is always 'struggling'/ putting on a brave face, and sometimes unhappy.

I think I need to wait until we're back into the routine of the next school term, and see how he is.

Good luck on your 'journey' - I'll watch with interest.

That's interesting, because after I read through what I'd written it didn't seem very convincing to me!

I just read through your thread, and I would definitely agree with whoever said the best thing you can do is follow your instinct. Your are is mother you know him better and more intuitively than anyone else (including his father I believe, sorry if that's not a popular comment. I have known many friends to ignore their instincts about their own child because the father didn't feel comfortable with it. I really do believe as mothers we know best.)

I think because my ds is younger, I don't have to see his sadness so it is easier for me to be positive. Whether or not yourds has aspergers, it is difficult to see them unhappy of course, and I suppose that I'm actually feeling really empowered by the experience so far because I feel like I can prevent his future unhappiness if that makes sense?

Makes total sense. Go for it. You're doing the right thing.

I'd say go to your GP and get the ball rolling a.s.a.p. Ask for a referral for diagnosis to a Paediatrician. It's not 'the medical route', but it is the best and quickest way to get it all going. If you rely on a nursery or school to do it, it may take much longer.

Fwiw, your DS sounds strikingly similar to my son, who is 5 yrs old and currently going through the process of trying to get a diagnosis (has had a verbal diagnosis of Asperger's, but needs to go through the whole diagnostic process).

Waiting lists are long, professionals are spread thin and even the best school in the world will only consider your child as one of many. You know your child best and are definitely his best advocate, so I'd say start exploring his difficulties yourself now.

Good luck!

Yes you are right.. We are moving in 2 weeks, so planning to register with gp straight away when we move and get appointment asap.

I am less concerned about the 'medical route' than I was at the start. Think I was left with a bad feeling after a less than great birth experience, and worried about the 'chain of ontervention' applying here too and where that might lead.

Feel much more confident now, talking to people on here, reading other people's experiences, also I watched it Young Autistic and Starstruck and found it really touching and hopeful.

I think with the impending house move I've been feeling overwhelmed with where to start with this, and also frustrated because for the next few weeks there's not much I can do (external to family life anyway).

And I really can see how beneficial it will be instigating a diagnosis now, I think I underestimated how long the whole process takes!!

Hello

We have just completed the whole process of getting our little boy diagnosed. It started with referral to my G.P., speech therapy assessment, hearing test, occupational therapy assessment, letter from school, and finally after 8 months, a very intensive 4 hr meeting with paed (just my husband & I) going over every detail of our little man's life and then Finn had a play-session for 2hrs with a specialist. The diagnosis was given there and then (still shocked only last week).

All the professionals were very understanding but nobody really looked at our little man in terms of his strengths - everything was negative - what he can't do.

For the past few months I have been researching via internet, library & trying to get info from professionals - this site and the people who imput are pretty amazing and really know their stuff. I have started to take notes!

Take care m x

Hi fullstop, I can understand your feeling about the professionals being negative. I think that was my fear about approaching a gp. I imagine their training is about dealing with weaknesses rather than creating positivity based on strengths? It's just not in the job description, you know? Doesn't mean you don't need it though.

I seem to be dealing with it in quite a different way to everyone else. Of course that could all change if and when we get a diagnosis and that might well be the point of shock for me.

Having someone come to me and say 'I think your son needs help and this is what I think is wrong" was actually such a moment of relief for me! Just a feeling that I wasn't totally alone with it anymore.

Its sounds like you've had a really heavy year and hopefully when the shock wears off you will have the chance to enjoy your son and being able to help him. I wish you well x