“Brendon!” I scolded. “I’ve asked you repeatedly not to use that word. It’s disparaging and inappropriate.” As usual I reddened, embarrassed at his misuse of language and feeling inadequate as a parent.
“It’s just a word.” He replied kicking a torn piece of paper on the floor in front of his muddy trainers. “Everyone says it. Like they say someone’s gay. Doesn’t mean they're gay and gay is bad, it’s just a word of the moment.”
“Err, which is also wrong- for all the reasons I’ve explained!” I said shaking my head at the doctor.
“ It’s OK Brendon.” Said Kathy, the in house pediatrician. Actually I didn’t think it was OK but that wasn’t what she was referring to.
“Having Aspergers/ PDA doesn’t mean you have anything bad or seriously wrong with you. It doesn’t mean you are stupid at all, it just means you see the world a little differently and may have trouble in social situations.” She offered calmly.
This was his first official diagnosis after we had been through the ADHD / Inappropriate /unruly/rude/defiant descriptions from the school. Although Brendon had been on a plan for behaviour with the SEN team, they said that he showed more than the usual ADHD traits and definitely Aspergers/ PDA. After various tests it seemed they were right.
“Here’s some information and some books to take home to help you understand it.” She offered.
“I’ll look it up myself, thanks.” He stood to his feet and went to the door. “Come on.” He urged at me, glaring out under his black fringe.
“Thank you very much.” I smiled and took the books and leaflets from Kathy.
This is what I learned.
ASPERGERS: People with Asperger syndrome can find it harder to read the signals that most of us take for granted. This means they find it more difficult to communicate and interact with others which can lead to high levels of anxiety and confusion. Asperger syndrome is mostly a 'hidden disability'. This means that you can't tell that someone has the condition from their outward appearance. People with the condition have difficulties in three main areas. They are:
Whilst it falls under the ‘Autism’ umbrella, people with Asperger syndrome have fewer problems with speaking and are often of above average intelligence. They do not usually have the accompanying learning disabilities associated with autism, but they may have specific learning difficulties.
PDA: Pathological Demand Avoidance:People with PDA can be controlling and dominating, especially when they feel anxious and are not in charge. They can however be enigmatic and charming when they feel secure and in control. Many parents describe their PDA child as a 'Jekyll and Hyde'. It is important to recognise that these children have a hidden disability and often appear 'normal' to others. Many parents of children with PDA feel that they have been wrongly accused of poor parenting through lack of understanding about the condition. These parents will need a lot of support themselves, as their children can often present severe behavioural challenges.
Layman's terms from a Mother who knows: Be prepared for strategic games at all times. If you can’t play chess, learn it now as it will help. You have to be 10 steps ahead and make them think that what you want them to do was their idea all along. This often doesn’t work. Be prepared to be out manipulated and out smarted at every turn. Always be ready for inappropriate responses and behaviour; if your child thinks someone’s got a big arse or he doesn’t like them, he’ll tell them. To others your child will seem like a cocky, obnoxious reprobate; sometimes you will think the same but you will also see the vulnerable person who can’t cope with reality. Do not buy nice things for your house for they will only get trashed when he goes on a MELTDOWN. You will be shown an honest and somewhat refreshing individual who is full of wit and charm but you will also be shown a living hell and the depths of despair. Know that you will be judged by those that are ignorant on the subject and think you clearly have no concept of parenting. Have tools that enable you to cope in a crisis like: good red wine, comedies and excellent friends. And chocolate. Definitely chocolate.