Austism Questions

[BabiesEverywhere]

This is a post for a friend of a friend.

A mother has had a diagnosic of Autism for her much loved and very difficult to handle middle child (of three), he is a pre schooler.

They live in a village near Portsmouth. She has been told that there is no treatment or help for her son for several years at least. Can this be true ?

Can you recommend anything for her to do to get help/support etc ? I have passed this forum to her, hopefully she will post herself at some point.

Thanks

no. it's not true.

My children were diagnosed at 2.5 and about 3 and they had a home visiting teacher, autism specialist and input from the child development centre before they started school.

In fact, NOT getting help for several years is the absolute WORST thing for autism because early intervention is crucial.

Whoever she is talking to is talking out of their arse and if she listens to them, her child will suffer.

Who told her there is no support ? Provision for ASD children is patchy and varies around the country but it is usually there in some form. She should contact HV/ Speech and Language Department to find out what there is locally. There is no one right way to go but it's important to start the journey. Where was the child diagnosed ? The paedtrician should know what is provided in the area for young children with ASD.

I think it was her HV who said there was no help/support other than a standard parenting course.

She finds her youngest copies her middle child poor behaviour. She is struggling to cope and tried to hurt herself and ended up in hospital recently

So she needs to contact her local Speech and Language Department

Thanks

The NAS (National Autistic Society) runs a course for parents of pre-school children with a recent diagnosis of autism. It's called the Earlybird course and is apparently very good.

I don't know Portsmouth at all but it would be worth getting in touch with their local NAS group (you can find them via the main NAS website).

Occupational therapy can also be useful. The waiting list can be long though but in the meantime there are some good books about sensory integration issues. The names escape me now (The Out of Synch Child, maybe?) but hopefully someone else will be able to tell you.

She might also need to look into applying for a statement to get some support for her son at pre-school and school.

ah. health visitor. that explains a lot.

health visitor is talking total shite.

no support. bollocks.

you know, i suppose there must be many good hvs out there but BLOODY HELL the bad ones really can fuck things up!

NAS website

there's an organisation called portage (www.portage.org.uk) that provides home visits for pre-schools with SN. Other professionals you might expect referrals to: SALT, OT, Educational Psychologist (to look at help that might be required at school/nursery), Paediatrician. She should also be entitled to benefits for him (DLA) on the basis that the Autism means that he needs more care than a typical 3 year old.

The local branch of NAS should be a good starting point to find out about local services, both voluntary and NHS. Local branch of NAS should also have details of brief courses they run for parents of recently diagnosed kids, to advise about behaviour/communication etc. If she's in a very bad way mentally, you could help out by making a few phone calls to find out what is available from NAS etc/procedures to make referrals.

I have done the Earlybird course - to be recommended, if only to meet other families dealing with the same issues. It is the one place I found where my daily struggles were accepted and understood, without scorn or criticism, and I have met some great families. Definitely contact the NAS for info.

I have problems with a younger sibling copying behaviours too - never found a satisfactory solution to that one.

Please encourage her to post.

My DS was diagnosed at Portsmouth child development centre. In the year before that, he was assessed by the eduational psychologist, paediatrician, audiologist and a social worker, all of whom still keep him on his books so we can seek their advice upon request. He was also already given a statement of special educational needs on the basis of suspected autism, which granted him a learning support assistant and speech and language therapy.

Needless to say, your friend's HV doesn't know what she's talking about as there is plenty of support in the area - try www.portsmouth-autism-support.co.uk/

By the way, it was sheer coincidence that my DS was already at a mixed mainstream/SEN early years centre, but I would highly recommend seeking referral to one for your friend's pre-schooler if at all possible.

Which side of Portsmouth does she live near? (North, south, east or west will do! )

Thanks for all the links and advice. I thought it couldn't be right to be offered no help at all.

I'll find out specfically where the mother lives and pass on the useful links and advice via my friend.

Hi I have just googled "Autism outreach team Portsmouth" and got the council's PDF policy on inclusion. In it it states what is available to preschoolers with autism.
Portage service
Nursery placement or specialist nursery
PELICAN a special autistic support team.
Hope this helps.

Hi, my dd2 has possible ASD (no dx yet) she's 2.8, we live in the sount west and we are getting alot of help, dd2 was refered to a special needs nursery where they are doing speech therapy with her and working on her social skills, the playgroup also offers parents to go on courses (free). We also get help from portage each week.

That is rubbish. We have no diagnosis yet, DS is 3 tomorrow and we have been 'in the loop' for only a few months.

We have portage fortnightly and a portage mothers group, plus drop in group. SALT for 6 weeks starting in january, a brilliant early years team member who has put me on workshops and wants to meet up for coffee to talk less formally.

Plus a local centre with general special needs play groups, drop in salt and other therapy sessions and a vast amount of take home material.

I am actually stunned at what has been put in place already. Although maybe it is a postcode lottery? We are very lucky in having a brand new 'flagship' centre very close to us.

Had a chat with my friend last night, the mother lives in Chitchester near Portsmouth...doesn't look that near on the Goggle map I must say She has no transport and is reliant on public transport.

So I'm going back through the links to see what I can find for her.

Thanks

No it doesn't (although it's "only" half an hour on the train) because it isn't a village, but a city in it's own right Afraid I don't know anything about support there.

Hiya, I'm in Southampton which is not too far.
Found this and this on the W.Sussex Children's Information Service website.

They will be eligible for Disability Living Allowance which would help towards transport (or running a car if finance is the issue?), plus if she doesn't work she will then be eligible for Carer's Allowance too. Depending on other income, Child Tax Credit could go up dramatically once DLA is received.

Does he have an inclusive pre-school place (ie 1-to-1 support)? My DS has come on leaps and bounds in less than one term with a 1-to-1 'encouraging' him to join in.

HTH