possible ASD?

[Elffriend]

I'm a bit lost so please forgive me posting here when I know so many of you are facing challenges and haertaches that are so my=uch greater.

DS's nursery teacher has expressed concern about DS's behaviour saying that he is often quite "detatched" from his classmates,is not fully socialising as they would have hoped, is not great at eye contact and does not always seem to understand what he should be doing.

At one end of the scale of their concern is that he is still young (4 in August, youngest in class) and still settling into it all (attending nursery since january) but at the other end they are hinting about aspergers/ASD.

They are bringing in someone next week who works regularly with the school to meet with DS and make an initial "assessment". She is primarily a language and speech therapist but apparently looks at other behavours too.

This has been a huge shock. Admittedly, DS does "wander off with the faeries" a bit but he has lots of friends outside school, seems happy, bright and lively and I have no concerns at all about whether he understands. He is alsohugely empathetic and tuned into people's moods and emotions. He can be stubborn about following instruction but I thought that was reasonably "normal" for a three year old boy.

I veer between not too worried to sick to the pit of my stomach that I have missed something fundamental to help him. Mostly the latter.

I think there are some traits I suppose and maybe I have been kidding myself but surely I would have had more sense that something was "wrong", or am I just completely crap?

What should I be looking for? What can I do to help him? I am waiting for this informal "assessment" and I just want to cry and scream because I feel helpless- and angry.

This is a horribly worrying time for you and nobody can give any firm answers. Asperger's is a collection of difficulties on a spectrum so there isn't any one thing to look for.

When you say he's hugely empathetic it sounds like he is very well able to read other people's emotions through facial expression and body language. My DD1 has Aspergers and is very empathetic once she knows that somebody is in difficulties - she can't always work it out for herself. So have a think about which of these your son can do.

Stubborn and three year old go together perfectly.

Not socialising or understanding what they should be doing could be about a hearing difficulty, bullying, shyness, anxiety or just being very deeply involved in his own explorations. It could be linked to Aspergers but that's one of lots of causes.

It sounds like there are some pretty big conclusions being jumped to here and I wonder if the teacher is jumping the gun a little.

Try not to worry. If he has Asperger's he will have been identified early and early support really affects children's outcomes. It's entirely possible that he doesn't have it.

If he has it and you haven't realised then join the club. My DD1 was 12 when we realised she has it and that made me realise my 7 year old has it too. It is difficult to see anything your children do as abnormal because their behaviour is normal to you. If you're c**p you're in good company!

Thank you for replying Al1son. I do feel wretchedly worried. I also have to watch myself not to get angry at DS at the moment (why am I doing that for gods sake????)

I have been thinking about this a lot. He can definitely read facial expressions and body language. Whether people are happy is a big deal to him (First time he watched 'Lost and Found' he went from heartbroken to ecstatic!)and he knows, for example, if I'm faking it. (Pretending to be happy when I still quite cross -even when I'm smiling!) From really young he has always loved books and we have always looked at facial expressions, how the characters are feeling and why etc and I had never been concerned before.

I do think that, if there is an issue, I am pleased the school has flagged it and that we will be able to put some help in place but I still want to put my fingers in my ears and say lalala and I still hope she is jumping the gun.

What made you realise it with your DD?

As you say, DS is just "normal" and being him to us. I just want him to be happy and have friends. (which I thought/think he has.)

I'm so confused. And now crying.

Thanks Justabout. That does all make sense, thank you. I absolutely agree, if this initial assessment does come back with any sort of conclusions I will push all the way to make sure they are correct and helpful.

And that I understand/believe them.

Welcome Elffriend, I'm lingle, I've spent two years of my life addressing these questions about my second child DS2 (who, I may say with some pride, is now blossoming at 4.10). I've had the conversation where I was asked to sit down and they used the ASD words with a sympathetic smile.

My son had a severe language delay, hid from the other children in the toilets,etc,etc.
My son's birthday is late August so I hear you, I hear you. Sending him to school in September is not compulsory. I can talk about that more if you want.

Can you articulate why you are feeling anger with DS? I think I can imagine... (having been there)....in fact I think most of us can..... but don't want to put words in your mouth.

There is so much I could say right now. First I'll say this: You were the world's leading expert on this child before this happened. You are ten times more the expert now. Other people are experts on syndromes and labels that change from decade to decade. Sometimes these labels are useful if a child needs support in the classroom. For some of us, they have even been liberating (some of us were told we had "naughty" children - or believed we were bad parents - until we found out they had "ASD" instead). But they are not your child. Your child is the child you have always known.

We were blessed with a superb nursery manager. When she felt she had really "cracked it" with DS2 she said to me: "I think I'm finally getting to see the child you have been describing to me. You know that I never doubted you, don't you?".
This is possibly the best thing anyone has ever said to me. Your nursery's job is to learn about your child's needs and to get to "see" the young man you know and love. Professionals can help, but don't forget who is in charge. We united as a family to take action (more on which below) and invited the professionals to join our team on our terms. When their proposals were inappropriate, we walked away.

Books published to help children with "ASD" are useful for nearly all children. It took me a year to buy one of the most useful books I had - I was scared to get it because it had "autism" in the title - don't repeat my mistake. Using books with "autism" or "ASD" in the title won't mean he has "it". My favourites are those published by Hanen, available in the UK via Winslow. This organisation publishes superbly written books that empower parents to take action to help their child with his difficulties. "Playing laughing and leanring with children on the autistic spectrum" is also highly recommended on this forum. Consider buying either "more than words" or "talkability" (talkability is for the 3-7 age group and assumes fairly good language).

Do not allow anyone to tell you you are wrong about your child. You may misjudge technical milestones - sure. But you know his nature and his character. Whether or not you choose to go for a label is secondary to that.

Hi Elffriend.

I can totally relate to your feelings on all of this. My DS's nursery teacher flagged up very similar concerns about him at exactly the same age and it was a very worrying time. They had someone from the LEA (an ASD 'expert') come out and observe him, and she said it was really too early to tell and that his behaviour (slightly detached, very defiant/oppositional) could be AS or could just be a stubborn 3 yr old. She advised us to 'wait and see'. In a child who is struggling profoundly, I would say 'wait and see' isnt the best approach. But if you aren't sure - depending on what the nursery and SALT say - perhaps it is? It was for us. We waited another year to get a referral, by which time his differences were becoming more pronounced.

The other option is that you get a referral through your GP to a Paediatrician. You can do this yourself, without any input from the nursery. May be worth thinking about? Waiting lists are usually quite long, so may be worth getting the ball rolling.

For us, things got much worse when our DS started a school nursery at 4 yrs old. He really stood out like a sore thumb - very bright, but unable to deal with the social interaction aspect of nursery at all. We (me and his dad) decided to get a referral to a Paed, and thank God we did, as with many AS children, the real test for him was school. This was when it became glaringly obvious that he has AS. The diagnosis process took about 18 months from initial referral, and has been very stressful, but the support he now has in place wouldn't have been available if we hadn't gotten his DX.

Your child is very young, and even a Paed might hold off diagnosing at this age if his problems arent severe, but there is no harm in making some gentle explorations now into his issues.

I do so sympathise with your feelings of worry and shock about this. Do keep posting - these boards are an invaluable source of advice and stress relief!

It's the uncertainty that is so upsetting. But try not to worry about the label. Even kids with a diagnosis are unique and totally individual, with different traits and needs. So whatever name they end up giving to your child's issues (if any), you'll still be helping him as an individual.

It's great that you are on the case when your boy is still young, even if it turns out to be nothing.

And remember, you say your child is happy. And that's fantastic.

Thanks for taking the time everyone - I went out for a bit! The combination of stressing about DS and trying to apply myself to job hunting (pushing a rock uphill)was getting too much so I needed some air.

Why do I feel angry with DS?

This will sound horrible and childish but my instinct is its because he is making people think he is a broken toy and I don't want him to be a broken toy and I don't want people to think he is a broken toy so I want to have a 2 year old tantrum and take it out on him for being broken.

We had such a horrid start together. He had silent reflux (which the medical world denied) I had hideous PND. Now we are actually starting to enjoy being a family.

I had relaxed a bit into being a mum goddmammit.

I want to be practical and positive and strong. And I will be. I am. But not right now sat here on my own.

Right. Pulling myself together (nose blown!). I do respect the staff at his nursery, they are lovely and I know just have his best interests at heart. I'm glad a third person is going to have a look.

I just find it difficult to see him as having profound problems. I watch him with his friends and he loves being around them and laughing with them. Sometimes he even shares willingly .

His hearing is fine. he can hear an ice-cream van several hundred miles away (and he does not even like ice-cream) and he loves listening to audio stories in the car if I have to drive through winnie the pooh one more time...).

He developed his langauge pretty normally I think. Not as quickly as some of his friends but ahead of others and is perfectly fluent.

Lingle, I will have a look at the books you have mentioned. I just want to be the best mum I can be to DS and DH and I will do everything we can to help him.

Glad you are all here Saves me being a headless chicken in front of DH.

Justabout - I think some of the behavious he displays at nursery possibly is differnt to when he is at home. Maybe he is not as good in a crowd? there are currently about 16 in his class - which is big for there. There will be 11 when he moves up in Setember.

His "home crowd" is generally a gang of about four or so (although he goes to lots of groups where there are plenty more) and, thinking about it, he is best when playing with just one other - he has befriended strangers in the park and had a whale of a time playing with "his new friend". But when I see him at parties say, he does tend to be slightly on the outside.

He has three parties over the weekend (god help me), two of which are with his classmates so I shall be watching much more carefully than usual how he interacts with everyone.

So, an update. Had a meeting with DS's teacher (and the teacher he will have in Sept) and the independent "assessor" who is a speech and language person but, she says, specilaises in working with children who have autism.

Meeting went well I think. In anutshell said that there were lots of "little things" for us all to keep an eye on but that there could be a lot of "false positives" at such a young age so whislt she was not ruling out that DS may be on the spectrum she also said he may not be. Also said that he had very good language and vocab skills for his age (so at least I got to smile and preen about something!). Still want me to get his hearing tested though. I know his hearing is fine and so do his teachers.

Anyway, I have been given a long list of things to work on gently with him over the summer across a whole number of different aspects of his behaviour (way too long to bore you all with) but a big area is around two aspects of behaviour that I think are linked:

1. not doing as he is asked ("do you find that he does not always do what you ask him" i'm his mum, he's 3, whaddya you think?!)
2. having difficulty switching to a new activity before he's ready to leave the first.

he has always been more comfortable with routine and is not too happy to have it switched suddenly but is getting better on this. But it can be at a micro level (refusing to leave the car until the particular story has finished etc.)

Anyway...I was toying with picking up something like "How to talk to your kids..."book to see if it might be helpful to me for those kinds of aspects - both if he is or is not on the spectrum. I know the book has been done to death on threads over time so I could trawl the archives but I wondered if any of you had a view - or any other things that might be helpful?

I'm feeling a bit more positive at the moment but I really want to see if I can help move him forward over the summer and help him to mature a bit (hoping it is just that)

I am also looking at "playing, laughing and learning" as recommended by Lingle but I'm not sure that would cover those aspects I mentioned (and actually, I think he plays well - it just does not appear to be translating as well into school for some reason)

My DD is in a similar situation, nursery noticed issues last November, we had flagged a few worries of our own at the end of term review. AS was mentioned, I didnt know what that was, we thought she was just slow to talk...she still struggles now aged 4.5. Since then we saw a speech therapist, development assesment, HV, had two previous hearing tests and today an inclusion teacher. I can say I am on the same rollercoster!

Her symptoms have become worse...more obvious...understood by us? Everyone we have seen so far has been supportive and as the inclusion teacher said she needs support even though she thrives at school, the teachers simply dont know her well enough, or all her traits! A meeting is being arranged before the end of term as she starts big school in september.

We see a combined clinic in august, hopefully for a diagnosis. After denial, falling apart, crying and lots of research we are sure ASD or AS is aparent in DD. I havent found much information about her speech problems yet, repeating, babbling, a lack of two way conversation, an American accent!

It can be lonely to go through this...thank god for mumsnet! I tried talking to friends....who dont have kids...and ended up feeling like I was a drama queen! Whatever the outcome it is fantastic to have a happy, unique, entertaining...and occasionaly challenging child!

I hope all goes well for you. Feel free to pick my brains anytime!