Aspergers/ASD support thread

jellyhead

hi dummie,

like you i had PND and my health visitor thought i was being neurotic (especially about the milk allergy/intolerance!). but she had to refer him for speech therapy and she had to refer him to the child development centre after the 2 year check because despite what she thought he wasn't developing the way he should have been.

did your health visitor really tell you to look at the red book and she'll only do a 2 year check if you insist? or was she just offering to do it early instead of waiting until he's 3 because there's a long waiting list.

spud was referred for speech therapy at 18 months. he didn't speak until 3 and a half though. the child development centre had a multi-disciplinary team (? - we were seen by everyone, hearing, sight, gross and fine motor skills, behaviour psychologist, speech therapist, nursery nurse who was a play therapist, paediatrician etc.) and from there we were referred to an educational psycholgist (because of cognitive delay), for EEGs and a fragile X test.

you should have a similar thing in your area, for children who raise concerns at their 2 year check.

jellyhead

all 2 year olds should be assessed as far as i know?

that's when they get the bookstart+ pack lol! http://www.bookstart.org.uk/Parents-and-carers/Packs

Dummie_2

Yes, she really said that there won't be a 2yr assessment until I request one. Regarding the books, she said that has to be requested too.

I'm now waiting for both appts to come through.

I thought the system had changed because I too read that ALL 2yr olds get an assessment.

Js_Other_Half

We met a health visitor for the first time this week - she wanted to introduce the service before we actually have this baby. She said that in this area that they are cutting the budget ( or staffing- can't remember which) by 40% within the next few months, and that they will be prioritising health visiting in the more deprived areas.The other areas will not get as much input.
Maybe your authority is doing something similar?

Good luck with it all.

andycarmi

Dummie wrote:

I thought the system had changed because I too read that ALL 2yr olds get an assessment.

My friends HV said that next year its changing and all parents will be sent a questionairre (sp?) and do their own childs 2 yr assesment!!!!!!

jellyhead

that's a shame :-(

smartie-rolo

hi, my daughter first really spoke at 3 years and 4 months...and my son at 3 years. As to why, we dont know. Both are 18 and 20 yrs now.
Oldest has 10 gcses and 4 a levels..all at 'a' grade and son similiar.
Dont worry.
For the 3 years of silence l had, l cant shut either of them up now!
All the best.
Lizzie
x

jellyhead

lol! my son spoke at 3 and a half and the baby is now 16 months and rarely makes a sound. i did catch him babbling to his 8 month old (very chatty!) cousin the other day but he can go for weeks without making any noise.

while i always knew my eldest needed help (with more than speech) i am not at all concerned about my youngest - there's nothing 'different' about him, you just know when your child has a problem and early intervention can make a massive difference.

with my eldest he got the early intervention (portage, play therapy, speech therapy, occupational therapy, behaviour psychologist, nursery help (no spaces in the social services nursery so they paid for a day of nursery instead, at an ofsted approved nursery) etc. and he even got free nappies after his 3rd birthday) and was on the list for a special needs nursery. the paediatricican said 'he's not quite normal' but delayed diagnosis. in the meantime spud got all the help and support he needed and went to a mainstream nursery with a statement of special needs. the paediatirician never did come up with a diagnosis, kept seeing him for more than 6 years! but as he said the help and support was given so what difference would a label make?

so while perhaps sometimes a child does not get a diagnosis at the age of 2 it's still worth getting referrals etc. at that stage because early intervention did wonders for my boy and he's now in mainstream school with his statement taken away and is doing fine, he's in the top stream (out of 2 lol!).

Dummie_2

When picking DS up from nursery today his keyworker informed me that she will be out for training on Wednesday so won't be able to attend our meeting. I said I'll go ahead with the meeeting with the teacher and if needed, might reschedule an appointment with her later.

I was talking to my sister. Told her about my concerns. She suggested that maybe I should go private for an assessment. That way I can bypass the keyworker, HV and GP. I can get my answer quicker which will save me a lot of stress and DS can hopefully get the help he needs quicker (if he is diagnosed).

The only thing is I have no idea how to go private. Anyone know? I don't know who to contact. What to ask for. What consultant/specialist covers this sort of thing etc etc, so yeah basically clueless.

Today we went to the shopping mall. We were sitting by the fountain and DS was standing next to me holding my hand just staring at it. In front of the fountain was 2 toddlers who were throwing coins in, clapping, jumping, dancing, talking. I know I shouldn't keep comparing, but it's so hard. Every thing I'm observing now is like a stab in my heart.

Dummie_2

Someone pls reply to me.

I was looking on the NSA website. On it they had a checklist for autism in toddlers (CHAT). According to this DS is of medium risk of beinging autistic.

Also, there was a page called diagnostic options: a guide for health professionals. I copy it below.

What should health professionals look out for when parents express concerns?

The RED FLAGS for autism
Communication concerns
Does not respond to his/her name tick
Cannot tell me what s/he wants tick
Language is delayed tick
Doesn't follow directions a few
Appears deaf at times tick
Seems to hear sometimes but not at others tick
Doesn't point or wave goodbye tick
Used to say a few words, but now doesn't. tick

Social concerns
Doesn't smile socially tick
Seems to prefer to play alone tick
Gets things for him/herself tick
Is very independent no
Does things 'early' no
Has poor eye contact tick
Is in his/her own world tick
Tunes us out tick
Is not interested in other children. tick

Behavioural concerns
Tantrums no
Is hyperactive/unco-operative/oppositional no
Doesn't know how to play with toys no
Gets stuck on things regularly no
Toe walks sometimes
Has unusual attachments to toys no
Lines things up no
Is oversensitive to certain textures or sounds no
Has odd movement patterns. no

Absolute indications for immediate further evaluation
No babbling by 12 months tick
No gesturing (pointing, waving, bye-bye, etc) by 12 months tick
No single words by 16 months tick
No two-word spontaneous (not just echolalic) phrases by 24 months tick
ANY loss of ANY language or social skills at ANY age. tick

Now I want to just go direct to the GP with this tomorrow morning. No waiting for the Wed meeting. No waiting for the HV visit next week.

What do you think? Pls reply to me. Do you think the above is enough to warrant a referral. I so don't want to mess this up.