A big challenge for many parents and family members is coping with their perception of the “label” of Autism.
There are pros and cons of being associated/diagnosed with the word Autism. It is important to realise however that the cons do not outweigh the pros, many of the cons relate to issues of public awareness and education which many organisations, including ourselves, are committed to working on. Hopefully with time the “label” of Autism will simply mean an access to services, a compassionate but not patronising outlook from the public and a part but not a definition of a person – we believe this will come, but the battle will be won by making people think not from being afraid to be upfront about the condition (though we understand how so many are!).
The Positives of Autism as a “Label”:
Services and Supports: This is the big one, having a diagnosis of Autism directs diagnosis and allows you access (or access to apply) to a number of support services and interventions which can make a major difference in the life of your loved one. Without receiving the label of “Autism” these services could not be accessed and your child might be left without all important interventions.
Provides a clear definition: Without a diagnosis it can be difficult to research or fully understand your loved one’s challenges. Additionally without a basic term to begin with, it can be hard to explain the difficulties your loved one has to another person or even to the person them self.
Increases understanding: In an often cynical world, a diagnosis of a recognised condition such as Autism can increase the understanding others show to your loved one. Understanding is so important – allowing people to be who they are and to be respected and supported as they are. Anything which helps increase understanding has to be good! That said it is important we don’t get this mixed up with a non-existent obligation to explain away the behaviour of a loved one.
Helping your loved one: Imagine living with a condition like Autism but never receiving a diagnosis. All the challenges which the condition can bring to a person’s life would seem unexplained and force you to wonder why you are as you are and to think that there is “something wrong with you”. For many, knowing that they have a condition like Autism helps in gaining an understanding and acceptance of the challenges life with Autism brings.
There are, however a number of problems with the “label” and we absolutely recognise them and are determined to work to address them!
My child/loved one being treated differently: We all want the best for those we love and want them to have every opportunity to reach their own potential. We might worry that accepting a “label” like Autism runs the risk of exclusion, bullying or even well-intentioned fuss being shown towards our child/loved one. Bullying and exclusion however are problems for people with the condition with or without diagnosis and it is essential we would not let such a negative behaviour outweigh the positives. Equally, we are acutely conscious that people can be patronising towards people with Autism but we hope that educating the public about what Autism really is can make a huge difference in this regard.
People seeing the label and not my loved one: A very natural concern, people with Autism are just that, people who happen to have an additional challenge. It can be a real worry that people will see a disability and not a person but again this comes down to an issue of education which is slowly changing.
Will it hold them back?: This is another worry for some parents of children who are recommended to seek a diagnosis. All parents want their children to achieve great things but an Autism diagnosis does not stop this! Indeed there are geniuses out there with a diagnosis. In fact if a person is very talented or intelligent they are more likely to do well through diagnosis and appropriate support.