I have had one of those weeks when things have really wound me up. Its probably a combination of lack of sleep and the fact that we seem to have had a run of bugs in our house. My son went back to school on Tuesday after his sickness bug and promptly threw up again as soon as he got there. That was the end of my plans to tidy the house. Compound this with the fact that we have my family this weekend to stay so things have been pretty hectic to say the least. One of my friends always says that she can just about cope day to day, but it only takes one little thing to tip the balance. I can feel mine tipping…

On Tuesday we had the assessment done for our home care which, by the way, is going to continue. The only change is that the assessor said my daughter is no longer severe enough for her department so the actual funding may be transferred to the general children’s team. Fine so far, but what annoyed me was the fact that she said that if my son’s condition did turn out to be ASD then that would mean that the situation would change and that of course we could then stay under the children’s disability team’s remit.

Now, at present, we have no diagnosis for our son but the fact is that, whether his behavioural problems are down to his language disorder or are actual bona fide ASD, the traits which he exhibits are classically autistic. Obsessions, extreme routinisation, anxiety in certain situations and clothes intolerance are just some of the things which he and we as a family have to deal with day in and day out. Why should it make any difference if we have the title autism as the end result is exactly the same? It seems that if you do not have an official diagnosis, then your disability is seen as second rate and not as important or impacting on the family. If our son has the magic title of ASD then our home care is assured, if he just has an equally difficult but nameless disability then that does not count as much?!

It is so frustrating not having a diagnosis. Rather than giving a single term when asked, we keep on having to go into the finest of detail with Uncle Tom Cobbly and all, almost as though we have to prove that our children have a disability. There are also no support groups in our area for children without a diagnosis, you feel that you are on the outside looking in saying please can we join your club, are we allowed?