Living with Asperger’s – The good and the bad

If you want to know a fun fact about anything to do with the medieval time or even any history really, most likely my brother will tell you all about it and then engage you with another ten fun facts just because he can.

He is brilliant. His mind works in ways I will never fully understand how its humanly possible but that’s just him. He doesn’t fit into what society perceives as ‘the norm’ and these amazing skills he has often go unappreciated. My brother has Asperger Syndrome.

Autism Spectrum Disorder also known as ASD, is a neurodevelopment disorder which causes substantial impairments in social interaction and communication. To simplify that, ASD causes individuals to see the world a little differently and communicate in their own way. Under the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), there are three diagnosis, these include Asperger’s Syndrome, Autistic Disorder and PDD-NOS, that have all been merged into one single diagnosis, known as Autism Spectrum Disorder.

My brother was diagnosed at around the age of 5 and I remember mum and dad coming home and the family having a big discussion about what this means and how society sees his mind as ‘different’. Mum was handed a big 15 page document from the pediatrician outlining what Asperger’s was and how to deal with it at home.

I don’t remember reading the booklet I know I looked at it but to me my brother was just my brother, and I didn’t ever think of him being different. We accepted him and embraced his way of doing things differently to us and that was okay. He completely owned his Asperger’s the first year of him being diagnosed I remember him going up to strangers and telling them the great news of his diagnosis and for years to come him doing the same thing.

Late last year I along with my mum went to a workshop that focused on ASD, we found that it made us not only understand my brother it also made us understand ourselves as well. Although boys are approximately four time more likely to receive a diagnosis of autism than girls, current research indicates the actual prevalence of girls with autism may be higher than previously thought.

We also learnt that the characteristics that women with autism have are different to those men with autism, and because it is a lot more common for boys to have ASD, most media represented the characteristics that they have. The speaker actually spoke more so about girls with autism which I found quite interesting but still got a lot out of the workshop.

Apparently, women and girls with ASD are often artistic and not always focused on logic and maths which was news to me. The reason as to why girls are often not represented as people with ASD is because they are good pretenders, they often copy those they are influenced by speaking like them and wearing similar clothes.

Girls are better with social skills, communication, and imagination than some boys, this means that often their autism can go unnoticed and can be hard to diagnose. Girls with autism also often like things to be even and colour can often affect mood and concentration and they are often never ones to break the rules at school.

Girls try to remain ‘good’ and follow directions along with wanting to do well at school subjects. I saw this as completely different for my brother especially in his younger school years. I remember mum always used to get phone calls telling them that once again my brother had thrown a tantrum because he didn’t get his own way again.

I remember asking mum why his teachers didn’t understand him. We would always try to choose our words carefully around him making sure that he receives the information we were telling him in ‘his way’ for example he is always strict with times, if you tell him we are having dinner at 7pm you bet he will be at the table right on 7pm.

We never found it hard to communicate with him which made it that mum was forever going down to the school to sort it out and communicate to him the way we always had.

Apparently, people with autism have more brain-related health problems, such as headaches and epilepsy than typical people. Although he was cleared of epilepsy, he still to this day faints and there is still no clarification on what happens and why it happens.

In my brother’s case he can be looked at as sensitive, the smallest things triggering him to act out in his own way or as he got older quite the opposite. He is now very aware and feels so much and at times finds the only way he can deal with everything is shutting down completely in order to survive.

In most cases disability is in the eye of the beholder my brother along with my family are continuing to adapt and will continue to until we learn more about what makes him, him.

Fortunately, we are supported by AIIM Choices in our journey towards gaining a deeper understanding of my brother’s condition. As an NDIS Plan Management service provider, they go above and beyond to make sure that my brother’s plan is administered properly. AIIM Choices know the NDIS rules and most importantly, they support us in how to use all the funding necessary for support services that he needs. Through AIIM Choices’ NDIS services, my family and I are able to focus on helping my brother live his best life.