Aspergers/ASD support thread

andycarmi

Hi Dummie, glad to see things are moving.

A couple of things 1st is I have a link hear for P.E.A.CH. I use to work with P.E.A.CH A couple of years ago its a stands for Parents for the Early Intervention of Autism in Children.
http://www.peach.org.uk/Home

Its based in London but run workshops for professionals and parents all over the country. It runs a bi-monthly newspaper with helpful advice and supoort as well as support groups and such like.

Its has an intresting section on obtaining a diagnosis. Have your heard of CHAT - you can ask your GP/HV to do a CHAT test. CHAT stands for "Checklist of Autism in Toddlers" which has been developed by Dr. Simon Baron-Cohen of Cambridge University after an extensive research project. Its a new thing, see herE. http://www.peach.org.uk/AboutAutism/ObtainingaDiagnosis
AND HERE http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=128&a=2226

PEACH also run home based programs for children with ASD. It does cost a lot of money to run a program around 40k a year. Many families have had funding from their local LEA. Which PEACH also helps you with.

Its an Early Behavioural Intervention program and draws on over 50 years of experience in the field of ABA (Applied Behavioural Analysis) but it's not for everyone but just another option for the future if Its right for your family!

It may or may not be for you and your LO but as they say knowledge is power, something to think about.

Also something else that you may or may not find useful in the future is P.E.C.S. The Picture Exchange Communication System. I have worked with children who have benefited from such a program. http://www.pecs.org.uk/general/what.htm

Hope some of this is useful. x

Dummie_2

Just received a phone call from our health visitor. She says the pediatrician that our GP referred us to has referred the referral to a multi-disciplinary team?? How can they refer us to someone else without having seen us themselves? How do they know what our needs are? Ever so confused about this one. Anyone know about this?

We're also waiting to see the SL, audiology and orthoptics. Do these people come under the mulit disciplinary team or are they seperate?

Our HV will be coming over to see us in 2wks to complete a questionaire for the multi displinary team. Any insight on this as well pls? What is this questionaire? What does it involve? The secretary of the multi displinary team will come as well as apparently she's new and wants to see how the questionaire is carried out.

Again mixed feelings. Relieved and delighted that we are moving on and that we're in the 'loop' now but ever so worried, scared and concerned.

Oh some good news! Our HV has found a nursery for LO. He will start tomorrow for 2x3hrs per week. It's quite a nice nursery. Small and personal. When we visited there LO walked in, sat himself down at the table and helped himself to the toys there. I was amazed. He must have found the place very non threatening to be able to do that.

Thanks for reading.

Nikki

Although I haven't posted I'm still reading this thread and glad you feel like things are finally starting to happen. There is a great forum for ASD, it's called Asperger and ASD UK online forum. It's very friendly and would probably be a good place for you(as well as here) to ask questions and read/share in other peoples experiences.

Sultana

Dummie wrote: »

Just received a phone call from our health visitor. She says the pediatrician that our GP referred us to has referred the referral to a multi-disciplinary team?? How can they refer us to someone else without having seen us themselves? How do they know what our needs are? Ever so confused about this one. Anyone know about this?

This is quite common. (The GP refers for suspected autism, the pediatrician sees the child briefly and refers to the autism team - it looks as if they've missed out that step and are prepared to take the GPs word for it) A lot of different assessments will need to be done (and some need repeating after a set number of months) and if this is how it is set up in your area then hopefully you are in the right place.

We're also waiting to see the SL, audiology and orthoptics. Do these people come under the mulit disciplinary team or are they seperate?

SLT is almost certainly in the multidisciplinary team. The others may or may not be.

Our HV will be coming over to see us in 2wks to complete a questionaire for the multi displinary team. Any insight on this as well pls? What is this questionaire? What does it involve? The secretary of the multi displinary team will come as well as apparently she's new and wants to see how the questionaire is carried out.

The questionnaire will probably give you the chance to tell everything you have ever observed about your child. It's likely that thay will ask about family history - particularly with regards odd behaviour & mental health issues - so be prepared.

andycarmi

Dummie wrote: »

Just received a phone call from our health visitor. She says the pediatrician that our GP referred us to has referred the referral to a multi-disciplinary team?? How can they refer us to someone else without having seen us themselves? How do they know what our needs are? Ever so confused about this one. Anyone know about this?
.

This is a good thing this means that a range of professionals will all be together to see your sons case. It means that it will be faster as there wont be a paper chase and waiting to hear from each person.

Also that each specialise person can add there view there and then. This is very positive and will speed things up. It should mean that the buck stops with them and won't keep refering you to other people as there all there at once anyway.

Ted_Hutchinson

Autism and Vitamin D
Autism is now epidemic in the industrialized world. If you know an affected family, you know the tragedy of autism.

No one knows what causes autism. Why has it increased so dramatically in the last 20 years? How could it increase if it is a genetic disease? Why is one identical twin severely affected and the other not? Why are boys so much more likely to get it than girls? Why is it more common in Blacks? Why do autistic children have larger heads? Why can't they excrete heavy metals? Why is autism less common closer to the equator? Why do symptoms first appear around the age of weaning? Why do certain drugs increase the risk? Why are seizures so common in autism? Why do autistic children have frequent infections? Why do mothers who consume seafood during their pregnancy have a reduced risk of having an autistic child? Why do a few autistic children seem to get better? Why do multivitamins seem to help? We don't know any of the answers to these questions. We don't know how to prevent autism, or how to treat it.

Now a single theory answers all these questions. Furthermore, the theory implies simple prevention and raises, at least the possibility, of treatment.

The May 2007 Vitamin D Newsletter: Autism and Vitamin D.

If you would like a PDF of the entire paper Dr Cannell will send you one [EMAIL="vitamindcouncil@charterinternet.com"]vitamindcouncil@charterinternet.com[/EMAIL]

chrisewey76

my 6 year old son is autistic. very useful thanks

louidog

Phew!
As I am a new member to this forum I am still finding my way round but on reading this thread I am taken back to when my son was a baby and most of it strikes more than one chord. He is now 14 and after years and I do mean years of trying to get some sense out of someone...anyone in fact I finally got to the bottom of what was going on with him.

My son was so very late in doing everything...walking, talking, sitting etc. He could not play with other children. At home he would sit in one corner screaming while I sat in the other unable to help him or know where to turn as no one wanted to listen to me. When he got to school he loved it in one way but hated it in another. So much happened and yet I was called a neurotic mother because I questioned what was happening to him and the only person to understand was our GP. Still to this day she stops me in the street to ask how he is....he is now 14!

We finally got a diagnosis at the age of 12.....Autistic Spectrum Disorder. Was I surprised? No! He has Aspergers, dyspraxia, ADHD and oppositional defiance disorder. We finally got a statement for him 18 months ago. I have fought this hammer and tong and trust me, it ain't be easy! To make matters worse I work within the education system and with SEN children and know everyone who my son needed to see....but we were still unable to get that help!

Dummie I wish you luck with your fight to get a diagnosis but please....don't let the grass grow under your feet. Be a complete nightmare and drive all the authorities mad, let them know you mean business and go for it....your child is the most special thing in the world so don't let them pass you over like they did my son!

chrisewey76

i know exactly what you mean!!!!
i was very lucky as i was living in scotland when my son was diagnosed.
all done very quickly before he was 5.
when i moved back to wales, however, i was told that, even though he had been diagnosed and i gave them all the paperwork to show, they insisted upon doing a "statement". this took 6 months, in which time he had no schooling as they wouldnt give me any info on where he was to go!!
he is now very settled (thank god!) in a local school. he is in mainstream with support, that in itself being a constant battle!!!

hm2be

Dummie -This feels weird to write this, as this has all happened so recently. I have tell you that I came across your thread when you first wrote it, and my heart stopped as my 2 year old had many of the symptoms. It scared me so much I convinced myself that it couldn't be because the symptoms were not exactly the same. But I knew I had to do something. I shared my concerns with the doctor who passed me on the the Paediatrician who has confirmed what I already thought. If I hadn't have come across this I don't know how long it would have taken to get help for him. They have stopped 18 month/2 year checks in the area and have received no contact from my HV since my son was 7 months old. I want to thank you for being so brave in making your first post and highlighting Autism in toddlers.