Awaiting a diagnosis

How often have you heard "Well they all do that" or "He looks fine to me"? Most parents of AS children already have a pretty good idea that something is different about their child so to be 'reassured' can be infuriating. Whilst many children do have their funny little ways and many children may indeed have characteristics of autism but not enough to impair them sufficiently to warrant a diagnosis, there are also numerous children who could benefit from support in school and understanding from family and friends, yet are not receiving such help because of a lack of diagnosis. Children with autism rather than AS can usually be spotted by professionals and diagnosed far earlier than those with AS. Because children with AS meet their milestones at the expected age, it is often only as they begin nursery or school that their difficulties become apparent to anyone other than their parents.

If you are a parent reading this and your child has already been diagnosed with Asperger Syndrome, you will already be used to his or her little idiosyncrasies and unusual ways. If your child has little idiosyncrasies and unusual ways and no diagnosis then don't doubt yourself for one moment - if you think your child has AS, then you are probably right. While it often seems to be an uphill task trying to convince professionals that you are not paranoid or have spent too much time on the internet, remember that having an official stamp of AS doesn't change your child one bit. If your child fits the criteria for AS, even if professionals have seen him or her on a day when certain criteria are not so evident, then don't wait for an official diagnosis before you start to work with your child in order to alleviate some of the difficult aspects of AS and help him or her make sense of the world. Whilst awaiting a diagnosis, whilst maybe fighting for a diagnosis, there is no reason why you can't explain to friends and family exactly why your child behaves the way he or she does and how best to help. You can tell your child's school and teachers that you think that he or she has AS or would at least benefit from strategies which help children with AS. These can be implemented while you run the diagnosis treadmill with your child. Even if you are in an area where professionals do not like to label children, the school will welcome ways (OK maybe I should write 'the school should' - not all schools are so helpful!) to help your child and therefore make his or her teachers' lives easier too. It is likely that your child will be experiencing some kinds of difficulties at school even if he or she does not present as a 'disruptive' child. As I have written in Chapter 4 on autism, children on the autistic spectrum often behave very differently in different situations. Just because a school is not having a problem with the child, it does not mean that the child is not having a problem with the school.

Luke once called AS a "more extreme version of real life". As his mum, I know exactly what he means and I suspect other parents of AS children, regardless of whether they already have a diagnosis, will also understand such a statement. Many children dislike certain sensory experiences, but the passion with which our children recoil from them is definitely different and far greater than the reaction of a typically developing child. Many children develop fascinations, but the intensity of an AS child's passion for a particular topic far outweighs it being merely a strong interest. Indeed obsessions and compulsions are aspects of people with AS that definitely distinguish them from the rest of the world and certainly mark them as being different from their peers.

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