The Hidden Difficulties of Autistic Children in School

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

invisible disability

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.

Exclusion-1

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

14 responses to “The Hidden Difficulties of Autistic Children in School

  1. To the author of Planet Autism Blog
    (Don’t know her name)

    I always knew that things were not fine. I knew my language scripting would not match the language it was supposedly adequate in school. I remain ignorant until this day what Spanish words I should have used at school in La Banda, Argentina. It was a time of silence and poor introspection. In the midst of school, autism is ever present. I constantly fought the strong need of getting up from the desk and wandering around out of the classroom.

    I don’t like to generalize my experience but I think we do not have a reliable means of learning about our own ongoing repetitive behaviors, or distressed or angry facial expressions, or inappropriate laughter, etc. As a teenager with autism, I was as in the dark about that as about anything else, perhaps even more so.

    Sometimes I would shut down and block out all the stimuli. Sometimes I would show such over responsiveness to a particular situation that did not escaped the notice of the people who failed in assessing the causes of my mental states or the processes underwriting them.

    However, I very early was made aware how important is to realize that you cannot receive knowledge on high literacy from a High School education, not from its teachers. You have to proceed with open eyes and an iron will to become thoroughly educated. I came to believe that insight could not be taught, but had to be discovered through a personal quest.

    I’ve still got plenty to learn about how to overcome my autistic tics. For one thing, I’ve never learned to regulate my tone of voice or to avoid rising the volume of my voice at the phone. Could you advice?

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    • I too have autism, my husband complains my voice is too loud frequently! I wouldn’t cause yourself stress over this issue, it is part of who you are and who you are is unique as is everybody. Be accepting of yourself, nobody is perfect, we all have faults or things that annoy others. You mention insight, self-insight is a good thing but also can be an enemy – you can judge yourself too harshly. Don’t try to live up to what others expect of you, or what you *think* they expect of you. Be yourself and be true to yourself.

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    • Hi Claudia, I enjoyed reading your story, my son who is now 22 has struggled in much the same way as you thru school and life. It is so nice to know although alone, he is not alone. I wish I had all this information when he was younger, was so hard and still is, to explain high functioning Autism. Keep on going with your quest as he will. Thankyou Jane

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  2. I wrote a little book (15 pages) to help parents with autistic children…mine is 18 and doing well (now). Amazon “Rescued,,,a story of hope & help for parents of children with autism” Roberta Gore

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  3. Oh how true, thankfully our school is very informed but teachers different every year they get to know the child’s ways at the end of the year and then we start all over again and again

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  4. I’m going through the same scenario with a child who’s behaviour is different in school. I’m feeling like I’m going mad, where the do not see what we see as a family.

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  5. As a teacher in a primary school and also the SENCo I was really interested in reading the different experiences you have all had. It is often difficult to identify why a child is behaving in a certain way, and in a busy, over crowded classroom any teacher can become cross or frustrated by ‘disruptive behaviour’. But teachers are in that job because they care about their pupils and in the quieter moments away from the classroom they will nearly all be worrying about what is causing a child to behave the way they do. Please arrange a time to go and see your child’s teacher at the start of the new school year and explain how your child may show stress, what they dislike and like. Many of us are parents and we know children can behave very differently at home than at school. I have arranged a cooling down time for a child in the last half hour of the day when they could sit in a quiet place – this helped reduce their stress and made the journey home much nicer for child and parent and gave a chance to talk about things that had been perceived as unfair that day. With another child I arranged for them to have a ‘run around letting of steam’ time before going home, that meant they could manage to hold mum’s hand and get home safely. There are ways home and school can work together. We do not always get it right first time but we do want the best for your child. If you find one adult in school is unsympathetic please speak to someone else! I look forward to the new challenges September will bring, I hope you and your children are supported well enough by school to be able to look forward to the challenge of getting to know the quirky behaviour of your new teacher x x

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  6. Thank you for your message Clare. Some schools and teachers are better than others. I don’t personally believe in inclusion, I think teachers don’t have sufficient time or training to deal with that number of special needs children and the children are the ones who suffer. What is needed is a lot more autism-specific schools, there are special schools for the more severely autistic but what about those who have at least average IQ through to highly intelligent? Many can’t cope in mainstream but they would not be adequately catered for in a special school either. As a parent of two such children, it has been a constant battle which is still ongoing dealing with the issues caused in school, which they seem unwilling or unable to resolve. I am not alone in finding this, there is much anecdotal evidence out there on forums of other parents going through this.

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  7. Hello All,

    Thank you very much for your post and I want to congratulate you on your blog. As has been said, the time has seriously come to question the ideology of inclusion that prevails and whether teachers always have enough time or training or even the right personality type or level of empathy to work with neurodiverse children with ‘hidden disabilities’. At the heart of this is sufficient recognition of the neurodiverse as a distinct and diverse collection of individuals within society. My feeling on this is that majoritarianism still prevails and that until the neurodiverse community unites as one and demands as a united and growing group its right to be educated in alternative provision that nothing will change. The problem is that doing all this will cost a lot of taxpayers’ money because inevitably ASD/neurodiverse may have to attend boarding schools or be bussed long distances to schools that can be financially viable and can offer pupils a sufficient curriculum. As it stands, inclusion is the cheap way out and a lot of the time doesn’t really work.

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