ashbergers/autism?

[ibiza1]

hi everyone looking some advice i have just joined and i must say this site is great for info!

my daughter is 4 and she was always extremely shy and a bit eccentric if thats the right word.

anyway she started nursery in sep last and in nov it was brought to our attention that she had some issues, mainly she had not socialised with other kids in nursery, she always plays on her own, she loves dora the explorer and she alays say swiper no swiping and is scared of him its a bit unreal, but we av limited that programme, and other traits our that she is sensitive to noise she will walk round with hands over her ears when she hears other kids or children crying, the hoover on a sacry bit on a cartoon, just all different noises that shoudl not be that sensitive for her.

she communcates with me and her dad very little enough to get her needs across but i would ask her if she had a good day at nursery and she squeals YES and that it

getting her into nursery is a challenge she clings to me and would roll in a ball on the floor when the tacher comes to get her.

she is in her own wee world a lot of the time and i repeat the same thing over and over again b4 she realises what i want/need her to do.
teacher says that if all the other kids and staff went out of the room she would not notice?

teacher says she has problems concentrating and does not take direction.

also said she is very advanced in some areas
more recently they our concerned that she has got a bit rough they said she was never like that

we have just got a referral for her next wednesday for an assesment,

Anyone have any advice?

If you want to Google autism or Aspergers Syndrome, there is loads of info on the web
here for example
I'm sure someone will be along in a mo with some more personal info

I have drove myself crazy looking at the internet it makes me worse i think but thanks for response people r really kind on here rnt they?

i wish the referral was sooner feel like i av waited a decade for it

Hi Ibiza, I ahve 2 ds's with Autism (at separate levels- one is aspreegers/ high functioning, the other is high functioning but quite severe due to other issues).

Advice? Hmmmm.

OK, assessment is Wednesday? HArdest thing with ds1 was realising that you don't get answers at the assessment. DS1 and ds3 were both in the system years, and only now are we getting formal answers with him. Different Trusts work in different ways, but with others we neded reports from OT, speech therapy, physio, ed psych.... they all tkae time. Which is a pain and hard BUT also does give lo's a chance to catch up if they're going to. Some do. Certainly some improve and get a lesser diagnosis.

How is she at home? Kids on the spectrum can be very different at home to school / nursery but mine were always very detachable- they really didn't care if Mummy was there or not, which doesn't mean we don't have a goosd relationship- just that wasn't part of their security blanket iyswim? Independent little souls, almost from birth.

I would suggest if you are after info that you contact the national autistic society (fab website- look at the triad of impairments as a start), and see how that fits?

And remember that there are loads of us on here with kids that have varying levels of SN and we're always about for a chat

ok thank you very much peachy, she is pretty similar at home, in her own wee world and has very little communication with me and her dad, tells us when she is hungry tired sore or needs the loo, and is in a wee fantasy world bar that

so u dont get answers? then how do u push for them.

i do have a good relationship all the usual love u mummy mind u he has said i hate u on 2 occasions

but hey thats kids how do u cope and if u dont mind me asking do your children go to mainstream or sn school.

i just want the best for her, i dont care where that is

thank u so much for advice will look at that page

x

My boys vary so much- ds1 is aggressive and a problem at home, but better at school (some aggression / big ;iteracy problems) and is coping in mainstream with some 1 - 1. DS3 started mainstream after Christmas, but the LEA rep is taking mea round units next week as the school can't really do much for him- he ahs severe speech problems, and is very passive / almost absent at times. I also have a ds2 who is NT though and a new baby due exactly 2 months today, so my life isn't all ASD.

They will give you answers, but probably not firm ones as yet. Lots of things can have similar symptoms, and it is important fror you and your LO that tehy get the diagnosis right. You should be able to start getting feelers for ideas etc though, and also maybe ask about statements? Nursery should be able to help there- remember they take 6 months minimum to put in placeso if she will need one for school, you need to apply now really. IPSEA is a great website for that.

Life with a child with any SN is a bit up and down. getting a diagnosis sends even the most stable of us into shock and its worth being ready for that. You do adapt however- and with the right help kids on the spectrum often do fine. have a look at www. bibic. co.uk if youre interested n support / therapy you can egt without a diagnosis (lots of people here use it)

thanks again for your advice congrats on your pregnancy.

will let u know what wednesday brings

thanks

x

Hi Ibiza1,

Just wanted to say that I feel for you and what you're going through. Been in a similar position for some time.

Teachers are very good at indirect planting of seeds but, in my experience, not very good at nailing it.

My DS1 is now 7. He had very limited communication when he started mainstream nursery at the local catholic school. Also only communicated his needs or discussed a favourite topic. We had years of varying diagnosis & found they changed with the wind. e.g., Delayed development, Dyspraxia, Complex communication disorder. We had tried NHS assesment a few year ago but this was not very conclusive (too young)and was attempted by a Paediatrician in just one short appointment. Last year we paid for a private assessment - and ASD/Aspergers came shining through. BUT... This assessment took a long time and provided a full easy-to-read report (by an Educational Psycologist) which breaks down how my DS 'ticks'. It helped more than anything. School have used it endlessly and he's now very loving, chatty and top of his class for reading - He also shows some very impressive savant skills. Wouldn't change him for the world but he's continually growing & developing towards more mainstream behaviour.

Sorry for the long 'blog' but the message I'm trying to say is ASD (for those of a certain level of functioning) is not the end of the world, just a different world, it's not about the diagnosis. More importantly it's about understanding and being flexible. (If that's not to preachy ).

If you're looking for more info on Aspergers / Autism, have you tried WrongPlanet.net?- seems to be the US version of NAS and is very upbeat. It really helped me understand.

Hope things go okay.

Welcome to the SN board.

I have two boys who are both autistic. Ds1 is 7yrs and ds2 is almost 5yrs.

The system for assessments and diagnosis seems to vary depending on where you live. Here you would have an appointment with the Paed first and they would ask you lots of questions while observing what your child does. If the Paed thinks there is a need for further assessment then you have a full assessment with a variety of people: speech therapist, occupational therapist etc. They then have a big meeting all together (with you) and decide whether the child needs a diagnosis.

I would definitely reccommend writing lots of notes before you go to the appointment just to help you remember. The questions they will usually ask will be about things like:

• How was your pregnancy? Any problems etc.

• How was the birth? Any problems etc.

• What was dd's general development like? eg when did she first walk, talk etc.

• What are your particular concerns?

• How is she at nursery? eg how does she get on with everyone, what does she do while she's there etc

If you write some notes about these kinds of things it will help you to remember during the appointment. My mind tends to go blank as soon as I'm asked a question.

At the end of the appointment ask what happens next, eg will dd be seen for more assessments, will they leave it for a few months and then re-assess her etc.

Good luck.

Hiya,

The answers come but take a while, depending on who you see and how the system works in your area, as Peachy says.

My son was first picked up as having problems at nursery too. They got an educational psychologist to give them some strategies, but it didn't help. He was very very violent and disruptive.

I asked GP for referral to a paediatrician at the local hospital (I guess that's the bit you did). My son was 3. He saw us a few times and felt it was ADHD but didn't want to diagnose as he wasn't a specialist, so referred us to CAMHS (child and adolescent mental health service) which is who diagnose ADHD, autism etc in our area. That was where the delay came, as my son was only 3 and CAMHS don't see anyone under 5 here!

After lots of referral letters (things were really bad), CAMHS eventually saw him and virtually immediately said yep, ADHD. He was 4, nearly 5 then.

Over a year later, August when he was 6, we met a new CAMHS psychiatrist to discuss medication. She took one look (well, after an hour in the consulting room with us) and said she felt that it was more than ADHD and that it might be autism. Lots of questions and developmental history notes at lots of appointments later, and she referred my son for an ADOS test, which is supposed to help diagnose autism - it's like a series of tasks and they look for stuff like eye contact, facial expression, quality of communication and conversation skills.

My son scored in the autism range for the test, quite highly and so he now has the offical diagnosis: high functioning autism and ADHD.

That's how it works round here!

My son was already being assessed by the education system at the same time as all this as I wanted him to be statemented, so he had ed psych reports etc. already. If your dd didn't, the hospital would possibly do a school observation or get in contact with nursery/ school to fin out how she presents there.

I know what you mean about the internet obsession, same here, and it's good to have the facts, but sometimes the system can be slow and you just have to try to get the people who work with your dd to put things in place in spite of not having a diagnosis. They should be able to get advice from ed psychs/ the local SEN team.

Good luck x

Brilliant advice.

I remember panicking a bit when ds had his assessment. I didn't know quite what to expect but I had done a fair bit of reading on the internet and knew that there were definate signs of Autism. He was 3 at the time.

I think my ds's assessment was slighlty different in that we saw different professionals over several weeks so it wasn't all done in one go, but the psychologist during the assesment explained that it was very likely that he would get an autism diagnosis.

Since then, I have found the diagnosis being an advantage. He has now a statement and in a unit(attached to mainstream and he's so much more happier)Without the diagnosis I expect that the support he now recieves wouldn't have been in place so readily.

Good luck on Wednesday

thank you everyone for all the advice can i ask does anyone think the behaviour can get worse with different types of food, we started to look at r daughters diet and cut out all processed food/junk.

i think it is maybe a bit better now she is eating more fresh etc

i will leave a wee thread next wed to let u all know how i got on with her

thanks again

Fantastic advice!!

Our experiance was slightly differant from the others here.

My Daughter who is 5 and has AS, was first seen by a Pead, SALT and Psyc, in combined assessment at our local child development centre. The out come of this was that there was a possabilty of an ASD.

2 weeks later we seen by just the psyc anf she did some IQ testing with DD. The outcome of this was that she was highly likely to have AS.

3 weeks later DD was seen again by the Pead and given a Dx of AS.

So from our first appointment to getting the DX was actually just under 5 weeks from start to finish !! .

Ibiza- yes food can certainly be a factor, at least for some kids. DS1 is on a casein free diet due to allergy (casein is in milk) and a gluten free diet to moderate his behaviour, the 2 diet combination is often recommended as a technique for ASD. DS3 interestingly also born with casein allergy- ds2 (the NT one) can eat anything at all. We don't yet use GF with ds3 as we've not needed it, but have noticed a marked increase in 'behaviours' since scholl started so may have to at some point.

I'm also casein allergic- if I have any m ilk I become extremely withdrawn and feel as if I am looking through a glass pane at the world and detahced from everything, and totally sapced. I imagine ahd I had the Gluten issue I would be similar to the boys, obviously can't know though.

The Bibic link I gave invovles nutritional therapy in their plan, also allergy induced autism website is worth a look, and we also used a salycyalte free diet for a while which did help but became unmanageable for a few reasons with ds1. Salycylates (cant remeber if its y or i in there so if you google try both LOL!) are in natural foods such as fruits, raisins, tomatoes- and the diet si often used with ADHD kids.

i have heard a lot about the casein free diet my daughter loves her milk too warm milk in a cup she calles it her bobo like my youngest

interesting anything is worth a try

thanks