aspergers and pre-school

[firelighter]

Hello. Am feeling low and confused.I have an almost 4yr old DS who started pre-school in September. He has settled in fairly well there but the teachers have flagged some concerns; mainly that he doesn't interact with other children and wants/needs one-to-one adult attention all the time and have mentioned Aspergers. Upshot is that they asked Educational Psychologist to assess him and we saw her yesterday. She confirms that he's not interested in other children, needs direction most of the time, appears physically intimidated by children if they come too close but is eager to learn, very communicative and alert with the teachers. I suppose I've always suspected that he's different from other children, but it's still a shock. Anyway, she seemed reluctant to diagnose anything and says see how things develop over time. I think what I'm asking is does anyone have experience of what might lie futher down the line? And is it a trait of Aspergers to need one-to-one ALL THE TIME?! It's exhausting. It's almost as though he can't function/engage unless through/with an adult(he's very comfortable with adults by the way). I am just so confused as to why children are such a no-no for him. He is also OBSESSED with numbers and v. articulate (although low vocab account apparently - an amazed). I fear for the future and need someone to say something positive. Thanks. And sorry for rambling. Just feel afraid.

Firelighter - so sorry to hear you are going through this. I am afraid I have very limited experience but wanted to bump to up to the top of the list so that someone who has bags of experience can come along and help you.

All I can offer is that this does not alter anything between you and DS. It is hard and exhausting and worrying and sad but you love him and he is yours and you are the center of his life. You must be very afraid for the future but there will be help offered and many support groups and give invaluable help.

I hope that someone can help you and give you the advice that will help.

Xx

Hi firelighter -
My ds was diagnosed with Aspergers at exactly the same time last year at nursery, and now he has just finished his first term at school. He sounds exactly like your ds, except my ds has the added problem of being quite physical/pushy with other children when he is intimidated/put off/has sensory problems with their physical presence. He loves adults and engaging with them certainly was how he spent 99% of his time as nursery! I spent the whole of last year panicking and crying and feeling anxious that life would be so difficult if he couldn't engage or at least be comfortable with other children.

Things have hugely improved! Where before he wouldn't dream of looking another child in the eye or speaking to any of them, now he rushes up to his friends at school and hugs them. There are of course still a lot of issues to do with appropriate social behaviour that he is having to learn (he hugs too hard, he can be too clingy, or he is flippant and decides someone isn't his friend any more and brazenly tells them, he doesn't anticipate and understand how his actions affect other children) and sure the other kids do find him odd at times. But I think progress is almost guaranteed especially when their situation is understood at such a young age. The teacher and SENCO at DS's school have been amazing and come up with lots of fabulous ideas to deal with ds's specific problems.

Also the school environment is much calmer and more engaging for bright Aspies! Ds loves learning and finds the more structured day much better to deal with than the chaotic free play of nursery.

The nursery SENCO and Ed Psych told me that school would be better and we would see progress but I didn't believe them as things were so so tough then (used to be left out by the other mums as they though ds was just a 'naughty boy'. He didn't get invited to any parties etc).

But with the right support that you really ought to get now your ds will make lots of progress I promise!

Hi Firelighter,

My DD (who is recently 6) was diagnosed with Aspergers just before her 5 birthday.

Firstly just to answer some of your questions, you ask if it normal for a child with AS to need 1 to 1 all of the time, well yes this can often be the case, but please dont despair............thing do get better

My DD is also obsessed with numbers she was at your sons age and still is to a certain degree, but thankfully we can now curb her interests a little.

She was also more interested in adults and older children at the age of 4, she would actually cringe when the other children came near her, now however she is starting to interact with her peer, and does enjoy there company (on her terms).

When she first started school (sept 07) she needed almost constant 1 to 1 support, however 12mths on she is starting to be alot more independent, i wont pretend that its been easy at times its could only be discribed as hellish and unfortunatley we had to change schools (to a much smaller school) last March, but she is now doing wonderfully well and more importantly she is happy.

Its fantastic that you sons pre school have taken such a direct approach with your sons difficulties however its really a developmental pead that he needs to be seen by educational pyscs cant diagnose anything, they are not medically qualified to. Personally if i was you i would seek a referal either via your GP or ask the ed psyc to refer you.

I hope this helps, there are lots of people here that have walked in your shoes, personally found the not knowing far worse than the knowing IYSWIM.

BBF. Thank you. You are so so right. This alters nothing about the way I feel about DS. Actually, I think this is all about the way I feel about me as a mother, if that makes sense. Just want to get things right.

MLK. Thank you as well. This is EXACTLY the kind of response I wanted. There is hope, then! I instinctively feel that school will suit DS better, because it'll be structured etc. I think I must now make sure the school/SENCO come up with strategies that are going to help him. Feel a bit at their mercy but will get my strength up and keep on their case (in the nicest possible way...).

Thank you again, both of you. x

TCFF. Thank you as well. That's really useful to know re. the developmental pead and will follow this up. It's this kind of info that you don't know unless someone tells you. Am so glad your DD is doing so well. You must be very proud. I know what you mean about not knowing is worse than knowing. Am getting used to saying Aspergers out loud, IYKWIM.

Fire - Just by engaging this head on and researching all avenues you are being a great Mum, with the right tools and information you will be just fine.

You're welcome, feel free to ask anything! I know what you mean it's all about wondering how on earth you can be any use as a mother and I personally find it so hard that he doesn't respond to all the things I always dreamed about doing with my kids when I had them (e.g. he used to refuse to sing Happy Birthday, so birthdays were out! Although planning one for this year as things are so much better!).

Something that helped us at the beginning of school and made me feel more in control (where as at nursery I felt as though I was on the receiving end of endless analysis and reports) was putting together a document for the teacher that set out ds's personality, how aspergers affected him, and things that did and didn't work for him. I also insisted that we have weekly catch ups so that I felt constantly in the loop. Subsequently we've built up a fab relationship where I don't feel guilty or anxious and all the teachers down to the Head are in possession of lots of facts and tips about ds.

Don't worry, and absolutely get a proper assessment asap and hassle hassle hassle for all the help available. There are lots of things you can do at home as well that help over time. One of the frustrating things for me is that even though you can be consistent with strategies they appear to make no difference what so ever for months, and then suddenly you notice an improvement!

You are spot on MLK. At the moment I feel a bit passive and caught in the headlights and want to get some control over the situation. A proper assessment is our next step. Could I ask you how this works, i.e. would they observe/test him at a clinic etc? Sorry for questions. I have felt so isolated with this for so long it's just a relief to find someone who understands my situation. Thank you.

You are spot on MLK. At the moment I feel a bit passive and caught in the headlights and want to get some control over the situation. A proper assessment is our next step. Could I ask you how this works, i.e. would they observe/test him at a clinic etc? Sorry for questions. I have felt so isolated with this for so long it's just a relief to find someone who understands my situation. Thank you.

Yes after the Ed Psych saw him and said her feeling was aspergers, we went to the GP who referred him to our local Pre School Social Coomunication clinic. About weeks later he had an appointment, prior to which you will be asked to fill in two large questionnaires! At the session he ?played? (ds sat down at the table with them like he was about to have tea and scones!) with a Speech and Language Therapist and an Occupational Therapist. We were in the same room but slightly to one side talking to the Community Paediatrics Specialist, who ran through a very lengthy questionnaire with us! To be honest, some things came up from ds?s behaviour in the clinic, like he wasn?t at all interested in the toys, wasn?t inquisitive, and didn?t seem to grasp the big picture of a situation but instead focussed on literal details. They showed him lots of pictures and asked ?What?s happening here?? and also ran through some sensory tests with him.

It was much more the observations that had taken place at nursery, and our own observations of his behaviour throughout his life that were the defining factor. What came out of the more ?official? assessment was that he could be placed on the local early bird register which made him entitled to extra support.

In our case this meant we had several meetings with the ed psych and therapists who helped put together strategies for home and at school. It was also very reassuring to hear about how ds would be supported through school. I think we are really lucky to have such a positive thinking and proactive set of professionals around ds because I know reading mumsnet this is not always the case! It made the transition from nursery hell to school much easier!

My husband and I went through a rough time at this point because it meant admitting to worries and feelings that I had kept to myself because I knew DH didn?t agree. He refused to accept the diagnosis at first (for his own load of reasons that then also needed unravelling!), so my own personal advice is be ready to be really honest about what you think before the assessment so there are no surprises or major disagreements during it!

Try not to feel isolated. It is unbearable at times and I really know how dark it can get. I think it is especially bad at nursery because it is such a right of passage and you have so many expectations for your child there. It?s so hard when they seem different from everyone else. But again, I expect this is about how we feel as parents, which is something we are forced to look more closely at than other mums and dads!

But when I think about the difference just one year makes I feel positive about the future, and you will to.

My advice to you - you need to be proactive here; you are your son's best and ONLY advocate.

Your GP should refer you to a developmental paediatrician as these people can diagnose (EP cannot). Your son will likely be seen at a clinic or child development centre.

I would also suggest that you start the ball rolling asap regarding obtaining a Statement of Special Needs from your Local Education Authority. A Statement is a legally binding document outlining his additional needs and support strategies to help him. If he requires 1 to 1 the surest way of obtaining this is to have a Statement. A Statement as well could make his life at school much easier, you need to think longer term too.
Applying for a Statement is not at all easy and takes a long time (6 months) to set up but if you get one for your son it will give him some legal protection for his educational needs which he otherwise would not have.

IPSEA are very good and they have lots of info re Statementing:-

www.ipsea.org.uk

Hi Firelighter

My DS1 who is 3.2 was diagnosed as being on the Autism Spectrum yesterday at what was called a multi-disciplinary assessment which is what they do in my area to assess social communication disorders. We'd had roughly a year or so build up to it but even still I was very upset yesterday and could only speak about it in a pitch dolphins could understand!

Today I am of the opinion that it is not good news or bad news its just news and we have a great team of professionals who are going to help us.

The actual assessment was played-based for my DS (things like the therapist blowing up a balloon and letting it go, pretend picnics, he got offered biscuits etc were involved) and I answered a lot of questions asked by the Paediatrician. The whole thing lasted about 2 hours of which the 3 Professionals (Paed, Speech and Language Therapist and either an Occupational or Physiotherapist) conferred for about 15 minutes before calling us back through and discussing it. They had also got a report from his preschool and a SALT had been in assessed him there too.

Do contact your GP and get the wheels in motion for assessments as I think waiting lists can vary vastly area to area. Ours has a policy of no more than an 18 week once the referral for the multi-disciplinary assessment had been received although the original got lost as did another faxed copy. Third time it made it there! The actual wait once they had it was more like 8 weeks I think.

Good luck, it probably feels quite overwhelming and daunting atm but nothing bad will come of seeking further help from the right places.

Yup, it can be a very daunting thing indeed when you first find out that there's a possible challenge ahead for your child and family. But speaking as someone with an ASD who (like many others with ASDs I know) is married with a family and a job, there's no need to think the worst. With the right help, support and environment, many of us (not all) can do pretty well in life because we often (not always) have other abilities that make up for the ones we don't have.

Thanks EVERYONE who's responded. I have had more comfort/advice in the space of 24hrs from Mumsnetters than from all the books etc I've read. Much much appreciated.
Amber, I hope you don't mind, but could you help me understand something? Why is my son fearful/intimidated by/not interested in children his own age but is fine adults? I would have thought it would be adults who would be frightening but this is not the case. It's always baffled me and just wondered if you have any insight into this. Sorry if I sound naive. Just want to understand. Thank you.

Thanks EVERYONE who's responded. I have had more comfort/advice in the space of 24hrs from Mumsnetters than from all the books etc I've read. Much much appreciated.
Amber, I hope you don't mind, but could you help me understand something? Why is my son fearful/intimidated by/not interested in children his own age but is fine adults? I would have thought it would be adults who would be frightening but this is not the case. It's always baffled me and just wondered if you have any insight into this. Sorry if I sound naive. Just want to understand. Thank you.

Firelighter, can't be sure, but some children with an ASD are very logical and fast-thinking, and want an adult to 'download information' at them 24/7. Often other children want to play, run, push, shove, laugh, cry, play games where the rules change suddenly, form social groups where there are all these unspoken rules...and those are fairly random and scary things.

An adult will often sit and talk, and that feels a lot safer and a lot more productive?

A play therapist told me it was because adults are predictable and children aren't. I've always been puzzled by this too. Ds alone with an adult will not shut up, but with another child he will go silent. Since evryone eventually becomes an adult does this mean that peer interactions will improve with time?

Nikos, interestingly I think it sometimes reverses. I'm now better talking with children than with a lot of adults, because the adults expect another adult to be a sophisticated and empathetic communicator, and can be scary as heck to talk to if they start getting angry. And although I'm bright, I can get the social niceties wrong very fast (can't download enough info on the person I'm talking to in order to work out what to say next without putting my proverbial foot in it from time to time). Children at least find my silliness amusing and non-threatening and don't mind me wanting to join in with the painting etc .

But we often learn coping strategies. We often learn the right thing to say and do for 95% of the time. It works well enough if we have enough chances to practise in ways that don't mean we're punished for making mistakes. I SO wish that other adults would still help teach me, instead of taking offence at things or shouting at me. That would help a lot.