One of our readers is the blogger for Planet Autism. We seem to have very similar ideas and understandings of the condition and have enjoyed lengthy conversations behind the blogs. In this regard I asked her to write a piece for corticalchauvinism.com and she complied. Usually I introduce the writer with some biographical information, this time she preferred to remain anonymous. The translation of the blog into Spanish can be found at: http://bit.ly/1INfwbC
People, as a whole, often judge by appearances. It’s human nature. If someone looks dirty and unkempt, they are clearly either homeless, mentally unwell, or an addict of some sort. The quiet guy with glasses is a geek, the rotund woman with children and groceries is motherly and the wildly behaving child must have ADHD or be poorly parented. But at a subconscious level, we know that we could be wrong, “never judge a book by it’s cover” as the saying goes.
Autism is a condition that affects every person with it differently, despite the core deficits adhering to diagnostic criteria in those with it, so there is often an according stereotypical view of how the individual will behave if they have the condition. There is public ignorance about autism – that can be forgiven to a degree, after all, unless autism touched your life in some way why would you know or bother to find out about it. When it comes to professionals, you would hope things were a bit better, especially if they are working with children as part of their job. So when autistic children are in education, it’s important that schools understand the nature of their difficulties, so that barriers to learning and well-being in the school environment can be addressed and the child correctly supported.
Many high-functioning children learn to mask their difficulties and also can display atypical presentation of what they are experiencing. One example is laughing when stressed http://www.autismontario.com/Client/ASO/ao.nsf/object/8+NewsLink+2004+Fall/$file/8+NewsLink+2004+Fall.pdf
“What are the “small signs” of stress rising?
These will vary depending on the student. It is important to identify these subtle behavioural changes in your ASD student in order to intervene before more spectacular negative behaviours occur. Here are some behaviours you might see:
• Small “tics” and repetitive behaviours (eg. eye blinks, facial grimaces, nose or throat noises, head movements, arm or hand movements)
• Language scripting (eg. reciting language from a movie or book, apparently unrelated to the situation) – certain phrases may reliably indicate stress (eg. “Do I have to do it?”)
• Distressed or angry facial expression
• Whole body movement (eg. getting up from desk and pacing, rocking, throwing things)
• Inappropriate laughter
• Rising volume and/or tone of voice”
So a child that is struggling in school, who may be suffering much anxiety, could be laughing and looking quite happy and teachers would believe there was no problem.
Another is flat affect. This means that either the child’s facial expression, or voice, or both, do not present the truth of what they are feeling inside. They could be upset, angry or again, stressed.
Because many high-functioning children hold their stress in all day at school, only to release it at home where they feel safe (a known phenomenon but one which schools often find hard to accept can be true, when parents report their child’s distress), teachers can likewise be unaware that they are indeed experiencing a high level of stress, related to such things as sensory overload, processing difficulties, bullying and pressure of the environment.
Females with autism particularly, excel at masking their difficulties and mimicking their peers, so they can appear superficially to be coping and to have friendships, but are often on the periphery of a social circle and may in fact be ignored or teased by their peers and just tagging along. To members of staff looking on, such a female can appear to be surrounded by friends and in no difficulty at all.
Autistic children have in addition, a difficulty in asking for help, in speaking up. So they may not express at school, how they are suffering or failing to cope. It can be the case that the only person they will report their difficulties to, is their parent.
Children with these difficulties, can therefore slip under the radar and this is why it is imperative that schools listen to parents when they do report their child’s struggles. When you consider the various reports out there that doctors should listen to parents as their concerns are usually proven to be accurate, doesn’t it also follow, that also as experts in their own children, they would be accurately reporting their child’s failure to cope? In this article about special needs in UK schools, a lawyer makes the following statement (http://www.bbc.co.uk/news/education-31858681 ):
“Eleanor Wright is a lawyer and now works as the co-ordinator for the charity SEN SOS which advises parents on how to get through the assessment process.
She says they are increasingly seeing unlawful reasons for education authorities refusing assessments.
“They will say there was no evidence provided by the school, or the wrong sort of evidence was provided, when it is down to them to get that evidence – they hope they won’t be challenged,” she said.
“Parents have the greatest struggle, they do not go into this lightly – they are worried about their child being labelled, I do not see frivolous requests.”
So clearly the vast majority of parents are honest, not looking to ‘milk the system’ and they know their children. There needs to be respect for parents, partnership in communication with parents and an open ear to listening to what parents are telling professionals. As a parent who had a child in this position, quiet and studious at school, releasing stress through outbursts of laughter, masking distress like a pro and tagging along with a group of peers to whom she barely existed, I was not believed. In our case, the school was additionally dishonest, she suffered ongoing bullying and reported this to the school, but most incidents were not recorded, were brushed off and the school referred to it as “minor socializing difficulties”. She had been physically bullied and humiliated as well as verbally insulted. She was cracking up and telling me she would throw herself out of a window at school or have a breakdown, but the school wrote a report to our GP saying she was doing really well. As a result, the GP, showing true professional bias, refused to believe me and accused me of concocting our daughter’s difficulties. It’s a dangerous game some professionals are playing. At all times, they must put the child’s needs paramount, at all times they must be honest and at all times they must be willing to learn.
Teachers cannot be forced to become autism aware, but there is a wealth of information out there on how autism presents in children and which behaviours can be misleading. If parents can educate ourselves on our children, as human beings, why can’t professionals too? That autistic child that is ‘laughing their head off’ could in fact be going through an inner hell.
Planet Autism