HELP son diagnosed yesterday and i dont know what to do next ???

hi .. my son whos 4 has had his initial diagnoses from the paeditrician  at the end of march .. he still has to have further assessments which i am going to wait for before i contact the school he is due to start in august ..i feel exactly the same as u but i approached his nursery who are in complete denial as he has no apparent learning disabilities or behavioural problems at nursery .this has put me off ...but from reading everything on here i think a lot of people experience the same or similar . iv'e found this website a great source of info ..  the best thing of all though is knowing that you are not alone :)   

Hi

I feel for you as strangly enought on may 3rd our son Daniel (who is 6) was diagnosed with Aspergers so I totally understand.  It's as if everything changes and yet nothing changes!  You are given this piece of information and as a consciensious parent you want to do something but have no idea what or where to start.

I've also found it difficult to talk to other parents (unless they are parents with a child who has also been diagnosed) as they all seem to question the diagnosis and are generally not greatly supportive.  I don't this is intentional I just don't think they understand the way finally being given a diagnosis (ours took 8 months) changes everything.

As I don't know the age of your son this might not be relevant but I went straight to the Head of my sons infant school and basically asked her what to do because they have obviously had other parents who would have been in the same position.  She gave me the number of the local family support worker (who I didn't even know we had) which has been a great help.  Through contacting this lady I've been guided to a support group and she has also said she can come and do a home visit.

Best of luck with everything, you are not alone!

Hi,

My daughter was recently diagnosed with Aspergers and although I was expecting the diagnosis and it was a bit of a relief I felt alone and wasn't sure what to do first - it all appeared a bit of a mind field. I started with school and things are starting to happen and assessments are taking place but it all takes time.

It seems that services vary greatly but what I have learnt is that you need to fight for your child to get what they need because nothing is freely offered.

Diagnosis is tough whether you were expecting it or not. Being sent away to get on with it is also not necessarily unusual. This is because diagnosis comes under the NHS and help comes from the local authority in terms of education services or social services - except if there is a need for speech therapy or OT or if there are mental health concerns when some help will come from the NHS. It means the system is quite fragmented.

First of all give yourself time to get your head round it.

Secondly look objectively at what the problems are and then address them. The diagnosis doesn't really matter its the effect. 

If he is struggling at school then you could consider asking for a statutory assessment (look at NAS and IPSEA websites) and the SEN Code of Practice. This sets out the different levels of help.

If he needs hep with speech ask for Speech therapy visits to start

If you are strapped for cash or have expenses  - look at DLA - Cerebra, NAS and Contact a Family websites all good for info. My son gets high rate DLA for ASD so you will be eligible if you have to provide more care than a typical child of that age.

If you get middle rate or higher DLA you can also claim carers allowance and extra tax credits.

If you need family support consider counselling via your GP or asking for an assessment from social services eg a carers assessment for you and a disabled child's assessment - this might lead to an offer of respite which can usually be taken as direct payments.

If you have a carers resource or similar locally they can give up info about local support and also help you with DLA forms etc

Most children with ASD are in mainstream these days although often they are not  well placed there. You should take time to look around the options private and state run locally eg some mainstream schools have units attached. You should have a parent partnership officer attached to your local authority who can send you a list of options. Don't be afraid to look over LA boundaries if you are not happy with the local offering.

There are also private therapy options and the NAS website has info on all the various interventions.

The best way forward is to secure an educational psychology assessment either as part of statutory assessment or outside statutory assessment. You can refer yourself (just ring the LA switchboard and ask for the Ed Psychs) and ask for an EP to do an assessment of what support is needed and to come and talk to you about the options.

If your son needs speech therapy again you can self refer or the school can call this in.

Most schools will have a speech therapist, EP and autism outreach teacher attached to them who can come in so arrange a meeting with the SENCO and ask for all of this to start happening.

Just take it a day at a time and let yourself get used to the idea.

Hi 

My son hasn't been diagnosed yet. But i have been looking for ways to help him for some time. The book Ten things every child with Autism wishes you knew, i found really helpful. 

Also do you have a speech therapist, mine has kind of been the catalyst for all the help we have had. 

I don't really know what else to say apart from in a couple of days things will seem clearer to you, or that is how it was for me anyway, when we go the suspected diagnosis, but as Longman says there are loads of experiences on here already so probably worth reading to see what is helpful. 

Big hugs 

Vic x

Hi dan-mans-mum,

I appreciate this is all confusing for you.

JimV mod has given you the start points. There are already lots of posts on this website from Mums in a similar position to yourself, either just diagnosed or various distances down the line.  The most valuable thing for you is to read some of the experiences other parents are reporting on this community discussion pages.

You could let people know your son's age on here, as there are different situations for different ages. Some people don't get diagnosed until teens after years of problems.

Local authorities (eg County Councils) are supposed to have set up an autism lead officer, so this is an opportunity to put that to the test. Contact your local authority and ask them to show you the way forward (I'm not optimistic, but that, as I understand it, is supposed to be iin place to help you).

Find out if there is a parents group in your local area. The NAS website can help you find one. Getting in contact with them could really help you.

It is sometimes worth reading books, and again the NAS website hass reading lists. Ask people on here what books they've found most helpful.

Hope everything works out well.

Thanks, i just feel as if they have said your son has Autism now get on with it i dont know here to turn someone told me to claim dla someone else said he wouldnt be entitled to it, what school will need as he is in mainstreem someone else said he will need an sen i just feel like i have so much to do but dont know how to go about getting it done. at the moment i am finding it really hard to tell people that yes my sone does have a problem becuse upto now he had just been labelled as a naughty or difficult child.

Hi dan-mans-mum,

Hopefully other people will be able to share their experiences about what happened following diagnosis and I hope that helps.

You may also find it helpful to look at a leaflet the NAS has created called 'After diagnosis' which offers advice and information about what may happen now you've recieved a diagnosis. We're also working on including this information in the general diagnosis area but for now I hope this helps. You can download the leaflet here:
http://www.autism.org.uk/afterdiagnosis

In addition to the information in the leaflet you may also find it helpful to speak to our Autism helpline. The service is available from 10am - 4pm each weekday on 0845 070 4004.

As well as allowing you to speak about your situation they will be able to suggest other services that may be appropriate for you. These could be other organisations or other services within the NAS such as our Parent to Parent service or our Welfare Rights advisors, amongst others.

So if you'd like to call I'm sure they'd be able to support you right now as well as suggest further help.

You may also want to look for local services that could provide you advice and support. Our Autism Services Directory can help you find services close to you, if they are available.

I hope you find some of this information helpful along with comments from our other users who've been in similar situations before.