Important! New NICE working party re health and children and YP with ASDs

[Guest guest]

NICE clinical guideline: Autistic spectrum conditions in children and young

people

They are looking for 1 to 3 lay members for this new working party- closing date

is 30 September.I hope to apply - I really think it is important that they get

applications from parents and others not at the outset hostile to biomed or to

helping our children in other ways. The lay members can also be adults with

ASDs. I looked at the draft document setting out the scope of the working party

and it seems they haven't yet thought about specifying speech therapy and OT -

although these are supposed to be deliverd by the NHS. The scope mentions there

are various medical conditions affecting those with autism but don't mention gut

problems specifically. I am a little concerend that the document says that there

is a " social vulnerability especially in the most able group " ,as I think this

needs to be expanded so that the vunerabilities of those with intellectual

disability/ little or no language are not forgotten (it easily happens). The

docuument also says " Intellectual disability (IQ below 70) co-occurs in

approximately 50% of children and young people with autism. " I wonder where they

got that figure as not long ago S B-C was saying most people on the spectrum

didn't have learning disability (personal communication). So any other paretns

whop might be applying - I would be very pleased if you got in touch. There

will apparently be ably one meeting a months for 18 months, plus reading and so

on. We must try and get biomed and anything else that has helped people with

ASDs fairly assessed.

Among other things they will be looking at NB ESPECIALLY LOOK AT C)AND D):

" 4.3.1 Key clinical issues that will be covered

a) Psychosocial interventions, including: behavioural therapies (applied

behavioural analysis, applied behaviour intervention) educational interventions,

carer- and peer-delivered interventions art-based therapies (art, music and

drama therapy) sensory interventions (auditory integration therapy, sensory

integration) interventions that address communication and social interaction.

Pharmacological interventions, including: anticonvulsants antidepressants

antipsychotics stimulants hormones cognitive enhancers.

Note that guideline recommendations normally fall within licensed indications;

exceptionally, and only if clearly supported by evidence, use outside a licensed

indication may be recommended. The guideline will assume that prescribers will

use a drug's summary of product characteristics to inform decisions made with

individual patients.

c) Physical interventions, including: acupuncture hyperbaric oxygen therapy

chelation therapy.

d) Nutritional interventions, including: diet vitamins supplements.

e) Modifications to the usual management of specific problems associated with

autism, including: sleep disturbance feeding problems bladder, bowel, and other

gastrointestinal problems epilepsy regression.

f) Anticipating, avoiding and managing behaviour that challenges.

g) Alterations needed to routine and acute healthcare.

h) Information for children and young people, and their families (including

siblings) and carers, throughout the care pathway.

i) Support needs of children and young people, their families and carers

throughout the care pathway (for example, case management).

j) Interface with other services within healthcare and outside (such as social

services, early years services, education services and the third sector) for the

organisation and delivery of care, care pathways for the components of

therapeutic interventions and

management (including at key stages, post-diagnostic assessment and transition

planning) and to improve the experience of care. "

Margaret