DD possibly on Autistic spectrum-not coping well

[Suzyinwonderland]

Hi

When I picked DD up from pre school yesterday I was pulled to one side and told that they've had a terrible day with her. Lots of BIG tantrums, hitting children AND staff and in general just been incredibly disobedient. That was only for the last 40 mins or so, never the less, not good.

One of the staff suggested she may be on the Autistic spectrum and that I need to get the 'ball rolling'.

It really is a difficult one because she has always struggled socially, ie she is very over the top affectionate at times with other children, doesn't understand the importance of personal space and tends to jump everywhere. She has a very good imagination and good eye contact. She can also be an absolute angel for weeks at a time. She had 8 session in a row before end of term when she was perfectly behaved.

Because of the inconsistancy, I have yet to take her to a health visitor. It sometimes seems as though she can control it and other times it's like she has no control atall.

Had lots of tears over this. Trying to keep my anxiety away from DD, but it's very hard.

Can anyone help? Does this ring true to anyone else? Advice much appreciated. :)

Sometimes staff leap to the conclusion that a child has ASD when they haven't, but on the other hand it can be missed. I would see you HV to talk it over.
One bad session of 40 minutes might not indicate anything other than that she is tired or upset about something. It might be that they didn't handle her very well.

Well what do you think? a paddy in a few weeks may just be a bad day and mentioning ASD in passing to a mum is not a good thing. I would ask why they think this?
How old is she? Social graces take time to develop. If your worried IK would talk to HV but I certainly be asking preschool for more info and observations.
Hope your ok

The very first thing to remember .. Whether she is or isn't on the spectrum she will still be the child that you already know and love. if she is early intervention is a good thing.

have a chat with the HV, raise schools concerns and any of your own with examples if you have any.

And have a big hug from me!

It may be that when she isn't melting down during the sessions she is still experiencing difficulties but keeping them to herself. This would be consistent with being a girl with Asperger's Syndrome. If you would like to know a bit more about this see if you can get hold of one of Tony Attwood's books, especially "Asperger's and Girls".

Good eye contact does not rule out ASD although many professionals think it does. Good imagination certainly doesn't rule it out - it's common for children with ASD to have a complex fantasy world. It's more relevant to look at whether she can share imaginary play with other children her own age.

However, being aggressive and disobedient can happen for many reasons and it would seem to be jumping the gun a bit to presume she has ASD at this stage.

The pre-school need to being recording observations to help them to identify the triggers to her aggression. Can they give you any more info about why they are suggesting ASD. If you have concerns yourself you need to see your GP. Don't take your DD with you because that will stop you having a frank conversation.

Try not to stress too much.

Thanks very much for everyones advice.

I was actually going to go to my GP without my DD so that I could have a proper conversation. However, I know my GP pretty well and I would think he would say that there is nothing he can say unless he sees her. I could just be assuming of course. I might give it a go anyway.

As for what I think, I really don't know. I have been up and down like a yo yo. I sometimes think that's the only thing wrong with her is that she is just incredibly strong willed and stubborn. She hates being told what to do and sometimes simply wont do it. No matter where she is or who is telling her to do it. She wont sit for very long unless it's something that really interests her. This again makes me think it's something she can control. She does engage in imaginative play with others, but i'm not sure how much as i'm not there, but have been told when she does she's lovely. I get the impression that everyone who works there agree that there is a problem with her beyond basic bad behaviour, so I don't really feel I can disagree.

Apparently she should be starting school in january!! No way. I assumed it was next september if all was well.

I'm really not coping with this well. Today she is like a completely different child. All her bad qualities seem to have been amplified. I just wonder if this is because they are jumping to conclusions and are handling it completely wrong. I'm shaking just typing this. I'm so wound up and upset.

Suzy - I can relate exactly in a 'similar but different' way and send lots of sympathy.

We went through something very similar with our DS and while I agree it is hard to have this suggested to you, if it is maybe ASD then the sooner it is considered the sooner you can understand and help your DD (and you).

I went through that yo-yo for years, people would comment on DS's behaviour, meltdowns at home etc, then a few days, sometimes even weeks were considerably better and I would think I was imagining it all and just needed to be a better, calmer parent. Every time I asked for help was just told to use star charts and that he was attention seeking. Now he is 9 and we are expecting an AS diagnosis any day and he has been refusing school for months.

Agree with OP that it seems to be jumping the gun, and could have been more sensitively handled, but try not to panic (easier said than done I know).

Thanks Ampersand-sending sympathy your way too.

I just can't handle the thought of her not having friends and being singled out because of it. Does your DS have friends? How come he is refusing school recently? You say he's expected to be dianosed with AS, but was he ever diagnosed with anything else when he was younger? How was he at nursery/pre school?

Suzy - I went to my GP without my DS. He never asked to see my DS. He doesn't do the dx of Aspergers - all the GP does is refer you to the paedetrician....

The paed then will need to see your DD.

I'm on the autism spectrum, and a mum and married to a lovely hubby and I have plenty of friends now. Please don't get too worried about the 'myths' about the autism spectrum. Whilst it's true that we can absolutely struggle to make good friends when we are younger/if we are profoundly autistic or have other difficulties, with the right help and support and information we can get there in the end. But usually differently to other people's friendships.

For years they thought people with autism were antisocial and wanted to be alone, or were lacking in empathy. Now they've realised we're usually as social as everyone else, but we do our socialising in different ways (e.g. the online stuff). Once people cope a bit with that, it works fine. We do have to learn boundaries and we do have to learn not to talk over everyone else or talk for hours about things. Or invade people's space.

Please don't think it's all a disaster. It's always a big worry when there's news of this sort, but there's always hope.

DS has friend, sort of. A couple of children who have worked out that they enjoy playing with him, but have learned to remove themselves when they have had enough of being ordered around and talked at too much. I think people can often tell something is 'different' but he has never been singled out or teased that we are aware of.

At nursery/pre-school he was unaware of his space and strength, always bumping into people and waving his arms around in his own world and so 'hitting' them but it did not seem to be deliberate (on the whole) - this has improved as he has got older but it is impossible to walk in a straight line with him, he crosses front and back and bumps around, jumps and twirls all over the place.

We would hear complaints that he would not sit, had trouble with writing, poor concentration etc. but they were never raised as possible indications of anything and we were always told he had to try harder etc. He can concentrate if interested though, to the exclusion of all else.

He has not been diagnosed with anything else through the NHS but we have private reports for Auditory Processing and Sensory Processing difficulties. They gave us the courage to push for more investigation.

Will probably post a thread about school at some point but defeats me at the moment ... however I think main reason for the refusal is build up of anxiety from the way he has been treated as not trying hard enough or naughty, and loss of self-esteem. that's why i am so keen on early help whatever the issues turn out to be!!

But don't read too much into what I say, your DD is young and children do develop at different paces. But do listen to your own niggling doubts and believe in yourself.

Amberlight-it's great to hear from an adult who's on that spectrum who seemingly is leading a 'normal' life. What you said was very reassuring so thank you.:)Do you still struggle with personal space etc now? Is it something you are constantly aware of?

Ampersand-Thanks for that. He does sound very similar to mine. DD hasn't yet drawn a picture, she will just scribble all over the page and shout "TA DA!!"I don't know if it's that she really doesn't know how to draw yet or that she just wont sit long enough to concentrate. I know it sounds a strange question but is your DS good at jigsaws? How's his memory.

Suzy.. I know you have already been answered about woories over friendships.. I won't lie ds2 has had a harder time socially.. But there is always a friend out there.. Ds was bullied in primary school.. Partly because he's a bit quirky partly because he didn't have the skills to see others intent toward him( sitting duck syndrome!).. but mostly because the school did sweet FA about the situation.. But he still had children who wanted to be friends with him.

On to secondary school.. He's been there for a few weeks.. We have had one incident that was one of the same children from the primary ... The school have been hugely better and strongly nipped that in the bud very quickly.. Ds has a lunch break job ( in the library.. To help structure his time).. He has met lots of pupils, all of whom are getting to know him.. And so far we have 3 good friends :)

My DS started nursery on 7th Sept and 2 days later his keyworker asked if I had considered taking him to the GP.

He has now been referred to a Paed and we are waiting for an appointment.

However I have known there was something wrong since he was 18 months, I was just told by my HV and family that he was fine so didn't do anything.

He has no concentration span, can't keep eye contact, has meltdowns very regularly at nursery (5 today and that's a very good day!), he doesn't really play with others just plays next to them, has limited speech and growls and hand flaps when he's anxious or upset.

They are just his main symptoms that he's been referred for. I took him to the GP's with me and he sat on the floor staring at the ceiling and growling so I think she could see something was wrong.

I would just trust your instincts. I wish I had done that before now then he could have got help sooner.

Good luck with it all.

Not so bad about personal space now. I find it a bit scary if someone's too close to me in case they jostle me, which hurts a lot. (Other children/adults don't feel the pain at all, so it's very variable)

The personal space thingy is because of the dodgy/different wiring to the 'ancient' bit of everyone's brain (the amygdala). It controls how close we stand to people, and if it's damaged/missing/wired up differently, we haven't a clue how to solve it. We can learn to stand one arm's length away from people by measuring it with an arm, and gradually learning how to work it out without putting an arm out straight. Takes a long time and if we get overexcited we can forget

Suzy - memory of miniscule details from the past fantastic, short-term memory for instructions, conversations just had - really poor.

Jigsaws he could never do, but has recently done a small one, had to be completed line by line, left to right then back along etc. !! Hama beads though he can sit and do for ages, tiny though they are, handwriting, pencil, cutlery skills again poor. it appears to be all very contradictory and to be honest I think that's why it took so long to become obvious - was too easy for people who did not know what they were looking at to think he just wasn't trying (and we were guilty of that for a long time too). Age makes it increasingly unmissable ...

Firstly, I don't understand why you have been told that she should be starting school in January - she's 3.9, right? (I saw your post on another thread).

Secondly, a preschool worker is not qualified to diagnose ASD, and it is very bad practice to give an unsolicited opinion on likely diagnosis, no matter how well meaning. What she should have done is to ask you if they could refer her to their LA inclusion team for observation, and ask you to take her to your GP.

Thirdly, being variable doesn't indicate that she is being 'wilfull'. My DD1 has a brain malformation, and her concentration for some things is upwards of 10-30 minutes. Things that give her sensory feedback, like gluing. It fascinates her, she becomes transfixed and can stay for ages. Most other things only keep her attention for 30 seconds - 2 minutes.

Fourthly, you are in the right place . Step by step is the way to go. Visit your GP, ask for a referral to a developmental Paediatrician and go from there. A paed will look her over, possibly do a developmental test like the Griffiths scale - it is very play based, she won't even realise she is being assessed. If all is well, they will send you on your way. If there is a developmental delay (ie. behind where she should be for her age) or signs of disorder (ie. atypical development, such as obsessions, routines, rigidity, lack of imaginative play, while other areas are on target) then they will discuss with you and investigate further.

The only sure thing at this point, is that if there is an issue, you will be doing her a huge service by getting her early intervention. If there isn't, there will be no harm done and you will be reassured Either way, she is still your lovely girl.

Wow! I'm really quite touched with the amount of responses and advice. Thank you. :)

amberlight-Thanks again. It's so helpfull to hear your story. How do you find being a mum? Are you a new mum?

Lougle-She is 4 at the end of november. So 3.10 really I suppose. Never the less, it doesn't make any sense to me. I'm having a meeting with a school headmaster on monday. I'm getting her name down everywhere so depending on the level of assistance/funding, she'll be in the best place for her.
You're right in saying a nursery worker isn't qualified to being suggesting this, but because I can be incredibly anxious the moment she suggested getting her looked at, I imediately asked her opinion. I don't think she was comfortable saying it.
You're right, she is still my lovely girl and as much as she can drive me insane sometimes, I love her more than anything in the world.
I have been very tearful again today. Almost feel as though i've lost a bit of her. Does that make any sense?

I'm so emotional apparently i've lost the ability to make any sense. Obviously meant a nursery worker isn't qualified to suggest this. Oh dear.

My lovely ds is nearly 18 now, so I've been through the whole thing up to adulthood . It has been an experience, but one I wouldn't have swapped for anything in the whole world. Hard work at times (understatement of the year!) and I had zero support because those were the early days before anyone knew lots of women were autistic. They thought it was just boys for years. We had to just cope, or sink. If we went to doctors to tell them about autism symptoms we were told we were lying, or had a mental illness, usually.

I think it makes sense that it feels like you've lost a bit of her. What you'll find over time is that you've also gained new bits of her by having the chance to understand her more. But take it easy. One step at a time. Be gentle with yourself.

I suppose that's a nice way of looking at it. She's had a good day at pre school today, but then she's always been up and down which I posted originally. How is your son? Did he struggle at all?

It's terrible to think what a lack of support you had. How far things have come now. How severe were your symptoms when you were growing up? Assuming you don't mind talking about it. :)

Anyway, at least it's the weekend. Can relax a bit now.

I think the world has struggled with DS far more than he's struggled with the world, if that makes sense . He was an absolute handful for the first three and a half years - full-on autistic behaviours, little language, absolutely no desire to interact with people other than to hit them or make us do things for him, flapping etc. Once we learned to communicate, we got round most of the problems, and I've been able to teach him a lot about things because I understand something of how his brain wants to work.

My symptoms when young? Didn't know I was a person until I was 10, didn't use language to communicate for many years though I could learn and repeat phrases (like a parrot would do, really). Used to rock back and forth for hours. Collected things obsessively, very sensitive to sensory stuff, wouldn't socialise at all, ever. People were a total mystery that I had to learn about from books (like the Peoplewatching book by Desmond Morris that teaches about body language). I went through hell with bullying and hell with teachers thinking I was a waste of their time. So many lost opportunities because no-one knew and no-one was able to help.
So glad people have the chance of a proper diagnosis and some support these days.

It's facinating to here that your symptoms were really quite extreme and that now you appear to be an incredibly articulate and interesting woman. That's not supposed to be patronising in any way. It's just really opened my eyes. As far as your symptoms go, do you remember any of them, or is this just what your parents told you? Sorry to keep asking so many questions, but as I said before I find it all facinating.

I remember the rocking and the absolute obsession with things, and I remember suddenly realising I was a person when I got to 10 years old, so yes, some memories, but not what people would expect.
On tests, I score as "oh my goodness me yes that's definitely autistic!" rather than mild or moderate, but sheer ruddy determination and sheer luck have gotten me past a lot of obstacles. I disguise the difficulties I have (which I definitely do) and have many good friends and family and work colleagues and support team members who are just marvellous.

So happy for you!:) Sounds like you have a lot of special people in your life.

Are there any tips you can give me for my DD? What sort of support I can give her if anything is diagnosed.

Do now. Didn't for the first 22 years, barring one marvellous old friend who taught me so much about social skills etc.

We need to learn what not to say to people.
We need to learn what not to do.
We also need to learn how our brains work best, and use those strengths.

What your dd will need if diagnosed is love, respect, a supportive school, a good set of therapies and interventions to help her really enjoy life and be able to learn how to handle things. A good local autism charity can be a blessing, as can caring and thoughtful healthcare teams and specialist teams.

It's a bit like expecting a family hatchback car, and someone delivers a Formula One racecar with only room enough for one person and nowhere to put the shopping. It's loud, it's noisy, it's expensive, it takes a specialist team to get it started and a specialist driver to drive it. It's not a broken family hatchback, it's a whole different design of car. Not better, not worse as such, just different.

We're not 'broken' people (though there's certainly things I wish were easier for us...), we're a whole different design, and we're built to go at stupidly fast mental speeds for some specialised tasks, round amazingly predictable 'flat tracks'.

Have a read up of people like Dr Temple Grandin and Donna Williams and Wendy Lawson. They're really nice people in real life (I've done work with each of them) and each shows what the future might be like for some of us.

Will it be easy? Nope. Will it be worth it? Yup.