Where's the help????

We are still awaiting diagnoses its been a long hard 6 years!

The standard of suport provision is not great, but there are things you can do. Try to identify the activities and experiences that most engage the attention of your child and do these things with him in order to socialise him in a context that is meaningful and rewarding to him. Does he like swiming or animals or music?

Hi - not really therapy but I did find phoning the council helpful.  I asked what they had available for children with autism and was pointed in the direction of a lot of activities.  Hope that helps.

Hi kez0okm

How familiar your story sounds. Right down to the obligitory leaflet.

I must say I did begin early, before my children were even diagnosed in fact. (I have two on the spectrum) But i knew in my heart that something was wrong and that they needed a different kind of learning approach and life skills support.

To my shame i never researched anything after their diagnosis so it took me years longer; i'm sure, to arrive at anywhere near the place I could have been with some background knowledge and support. Couple that, with my poor research skills and you can imagine that my journey in helping them has been a protracted labour of patience and trial & error.

This said i acted with instinct and was astonished at how perceptive i was about their needs. You will find that much support has to be parent directed and driven and that seeking support doesn't aleways crop up in the anticipated areas. For example, my son was non verbal also in his early years and I moved to speaking with the royal institute for the deaf and learning to sign, in order to aid communication. My son now speaks fluently and can sign quite competantly as well, where as I on the other hand have nearly forgotten all I learned.

If you can, then reasearch as much as possible. Also don't look in the obvious places either. Some of the best solutions to daily living I've found come from access to tools used for entirely unrelated issues to Autism.

It is likely that your son will respond much more to imagery perhaps than to words per se, so I would go down that route with communication initially. When telling him you want him to put on his coat, tell him so verbally and also use an image to demonstarte that. Preferably not just the image of a coat, but of someone actually putting one on. These simple and some say laborious tasks are actually very good at establishing communication, even if it's only a basic level. Additionally, some who remain non verbal, actually manage to communicate quite well using assistive soft ware and gadgets. Carly's story is a classic example.

www.youtube.com/watch

Don't be fobbed off with labels, clinical statements that say your child won't communicate or decieved by appearances. You may need to find the the right key to unlock that low door in the wall.

If your son is severe you may be entitled to DLA. This is very important in two respects. Firstly, it will be a fund you can access to support him for the therapy he may need that is often time limited (6 sessions only for example on the NHS) due to cuts in the NHS, for private speach and language support etc and secondly will allow you to access more focused or private support needed to improve on areas of concern that are not traditional, such as dietary, oestopathy etc. I'm sure by now, you will have a number of reports from OT's Speach & Language therapist and the like. These reports will also be invaluable in assertaing what School your son will need and the type of support he will need in an educational environment. It seems far away at the moment, but a well thought out plan of support, guided by your own very valuable and intimate knowledge of your own childs needs will serve him well when it comes to his School years.

Support in a specific area is a difficult one. Often, you will have to travel considerable distances to access support for your child. In my case i have a unit close by, however, after nearly a year and a half, they have only just started providing the targeted support I was looking for for my sons, Mainly, money management and life skills for independant living.

kez0okm You sound like a very proactive person and I think you are on the right track. Please don't feel you are failing your son, it sounds to me like you are streets ahead compared to some of us. Your determination will make a huge difference to your son's life. My only advice would be don't wait for support to come to you because you will be very dissapointed. Seek it out, on forums such as this and Ambitious about Autism. If it's something everyday like sensory to certain situations ask and many will respond.

Your greatest support will be the advice you get from here and parents with similar situations to your own.

Stay strong.

CoogyBear

Is there a parents group (Local NAS or independent) in your area? Even if it is not immediately local they have support and resources you may be able to utilise.

On the NAS Home and Community pages you'll see in one corner a red/pink map of Britain. This provides means of searching for local services in your area. The search engine isn't always helpful, in that you may keep getting London based services at the top of a list even when you are searching the other side of the country, but if you scroll down you'll usually find something.

Even if you find a group that's too far to reach, ask them as they may know of a support group more local to you.

The benefit of a parents group is you can meet other parents, share advice and experiences (which you can do here but sometimes it is slow to start). Some parents groups run training sessions, and they wil have lists of support services both free and pay for.

With autism it really pays to network, and a parents group is a good start. Meantime hopefully you'll get more replies. Start of school holidays in some areas; I guess its just a little quiet just now.