Why look for girls on the spectrum in school?

This guest blog is from Joanna Grace who I first knew through her start up of the Sensory Project in 2010.  I liked what she was proposing to do and I pitched in a tenner towards it and watched how (thanks to much more generous people than me) the Sensory Projects have grown. In her own words:

Joanna Grace is a Sensory Engagement and Inclusion Specialist, Trainer, Author, TEDx speaker and Founder of The Sensory Projects.

Consistently rated as Outstanding by Ofsted Joanna has taught in mainstream and special school settings, connecting with pupils of all ages and abilities. Since launching The Sensory Projects Joanna’s work has extended into adult care for people with complex needs and dementia. To inform her work Joanna draws on her own experience from her private and professional life as well as taking in all the information she can from the research archives. Joanna’s private life includes family members with disabilities and neurodiverse conditions and time spent as a registered foster carer for children with profound disabilities.

Joanna’s books Sensory Stories for children and teens , Sensory-being for Sensory Beings and Sharing Sensory Stories with People with Dementia sell globally. She has a further four books due for publication within the next two years, including two children’s books.

Joanna is a big fan of social media and is always happy to connect with people via Facebook, Twitter and Linkedin

In this blog she tells us why it is so important to be looking for girls who may be on the autistic spectrum…

I was once told “boys on the spectrum make problems for other people, girls on the spectrum make problems for themselves” and although I disagree with the statement in a number of ways, that girls with autism tend to create more problems for themselves than for other people is something that resonates within an education environment.

Girls with autism often go undiagnosed until adulthood. In school they maybe quieter than average, their lack of social circles probably puts them on the edge of the squabbles that plague neurotypical female friendships through primary and secondary school. They are likely to be studious, their autistic brain’s willingness to focus and love of structure and rules fits them nicely into your academic expectations so your grade book won’t flag them up as a concern.

Does this mean autism is less severe in girls? After all if we are noticing the boys surely that means it is a bigger problem for them/with them?  This question makes me think of a meme that I saw doing the rounds of facebook recently, it was a quote by Adam Walton: “Mild autism doesn’t mean one experiences autism mildly, it means YOU experience their autism mildly. You may not know how hard they’ve had to work to get to the level they are.”

https://www.pinterest.co.uk/pin/132856257740455067/?lp=true

Whether you look to support girls on the spectrum in school depends on what you consider your role in school to be. If it is simply to fill children up with knowledge and you can point to the fact that this girl is duly filled to the brim with knowledge then her autism is no concern of yours.  If you believe that your role in school is to prepare children for life and to ensure their present life is as well rounded and as happy as possible, then her autism is your concern.

Girls on the spectrum are likely to learn the rules of conduct in school quicker than most, they will learn how to mask their autism, and expend an enormous amount of energy doing so.  Of course I am writing in broad brush strokes, to quote yet another adage: When you’ve met one person with autism, you’ve met one person with autism. Expecting people with autism to be alike is akin to expecting people with neurotypicism to be alike.  Perhaps I should talk about particular people.

Professional Experience

Recently I was working in a school where they have a girl diagnosed as autistic whose mother is very worried about her because her behaviour at home is becoming dangerous to her own safety. The school see no issues in the classroom and confided in me that they felt this was “a parenting issue.”  Let me make this very clear: Autism is not a parenting issue.  That school are putting that child in an environment that she can barely cope with and it is having a significant impact on her mental well being. If it continues into her teenage years she will be at risk of suicide.

I have also attended a support group for parents of children with autism.  We did a count of how many parenting classes everyone had done, and how many more they had been offered. Imagine if you had a child who was a wheelchair user, who was struggling to get around in school due to a lack of ramps.  How would you feel if the school’s proposed solution to this was to send you on a parenting class? How would you feel after your third class? Parents of children with autism often appear to be short on patience with professionals. There are very good reasons for this.

I supported an autistic girl who was struggling at secondary school with overwhelming levels of anxiety but who did not want her peers to know she was neurodiverse.  We put sensory strategies in place to help her maintain calm during the day. I could continue this list, but you get the point. Girls on the autistic spectrum need understanding and support despite their ability to fly under the radar.

Personal Experience

I often do not speak about being autistic myself.  I do not want to detract from the experience of people who lead more challenged lives, but I have been encouraged by those people, and their families to speak more. If society understands more about the incredible diversity within the spectrum that will help ensure everyone is recognized as an individual, not judged by a stereotype associated with the diagnosis.

I worry about mentioning my autism because I want to be judged for my professional skills, for who I am, not for who people will think I am after I say I am autistic.  But not mentioning it does nothing to change attitudes either.

I resent having to tell people I am autistic now, after three decades spent mastering the art of masking to a point where now I believe that if you met me you wouldn’t know, it feels rather like shooting yourself in the foot to then reveal the very thing you’ve worked so hard to hide.

But yes: I am autistic.  Now I’ve said it you’ll notice my poor eye contact, my slightly off kilter turn in conversation. I was the child who stood in the playground and flapped. The one who only ate beige (and tomato sauce). I was the baby who refused to be cuddled.

When I was seven I kept a diary for a year, each day I drew a picture, not of what I had done that day but of what I would have done had I had a friend. All around me I could see people making friends, but I did not know how to do it. I was seventeen before I first made a friend by myself.

I am yet to run an event specifically looking at supporting girls on the spectrum, I am still getting used to being “out” myself. But I lace insights about life on the spectrum through my other events and am always open to conversations on social media.

                                                    Books by Jo Grace 

Further reading and articles from Jo:

On Ambitious and Inclusive Sensory Story Telling I talk about how sensory stories can support people to make friendships and be a part of a community, and how they can help people to cope with new environments and change. [My book Sensory Stories for Children and Teens covers similar ground].

On Explore the Impact the Senses have on Behaviour I look at situations of sensory overload and sensory disturbance that are commonly experienced by people with autism.

On Develop Your Sensory Lexiconary and The Super Sensory Lexiconary I look at sensory experiences that can be used to support people with autism in feeling calm and safe, and explore why some experiences more than others may cause distress. [My book Sensory-being for Sensory Beings covers similar ground].

The other event I run which will be of interest to those who support people with complex disabilities and autism is Sensory Engagement for Mental Well Being.

On any of my events you can expect to meet someone utterly thrilled to be being allowed to talk about their special interest to a room full of people interested in the same thing. Autistic paradise!

Please feel free to connect with me via social media and to find out more about what I do at www.TheSensoryProjects.co.uk

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Autism and behaviour in secondary school

I’ve been reluctant to wade into the sea of behaviour debate I see in the news and on social media at the moment, but I would like to share some insights from my practice about how autistic students in secondary school use behaviour to communicate that something is wrong.  I want to show you how we might go about supporting them so that the real issues are dealt with and behaviour improves.

I do think it is important in secondary classrooms for all students to behave in a manner that enables the lesson to continue and the content and learning to happen.  It is necessary for schools to have a clear behaviour policy and a system of sanctions that are consistently used by all staff.   This provides clear expectations and clarity of procedure.

However, in my many years of experience supporting autistic young people in secondary schools I have learned that negative behaviours always have a reason, and that we can mostly be sure that the autistic student is struggling to communicate what the problem is.  They may get angry, obstinate, oppositional, withdrawn, self-harm or disruptive as a reaction to the frustration and stress of not being able to communicate and sort out a problem.  Sometimes they cannot understand what the problem is they are having.   Sometimes they are trying so hard to be good that the pressure causes them to have meltdown’s, usually at home.  We need to listen when parents tell us that – it’s a great clue for us that the student is stressed at school.

The key is to find out what may be causing the behaviour and deal with the cause, not the symptoms.  This is where adhering to a school policy of sanctions is at best non-effective, but it’s usually worse,  sanctions add to the stress and problems for the child and so the behaviour difficulties increase.

What to look for

These are the issues we have often uncovered when a child’s behaviour seems to become a problem in secondary school (and especially when there are sudden changes in behaviour)

  • Outside factors  Lack of sleep is a big factor, as teenage sleep patterns are all over the place.  However, many autistic young people have poor sleep patterns and may have done most of their lives.  Lack of sleep on top of puberty and growing hormones can cause an autistic student to display extreme tiredness, anger and signs of depression which can impact on classroom behaviour.  Sometimes it is family relationships or events that are the root of the distress they are displaying.  Other things like a child that may be experiencing bullying or abuse and be unable to communicate to someone about it, because they are autistic and cannot find the way to communicate, or because they are being threatened or manipulated to stay silent.
  • Bullying.  Since working in secondary schools I never cease to be surprised at the levels of teasing and ‘banter’ between students.  It can start as soon as they begin year 7.  It can look like pack animals seeking out the weak and isolated prey.   Any difference or simple ‘mistake’, social difference or physical feature seems to be pointed out and picked on.   This is a symptom of our society and some would argue that it has always been part of school and growing up.   But autistic students, with a social understanding difference are easy ‘prey’ and easily confused by all this ‘banter’.   Friendship groups change and establish clear boundaries, often leaving out and isolating autistic students.   Those who had friends at primary school become confused when those friends find other friends and don’t want to hang around with them any more.   Being teased and not understanding the sarcasm or jokes directed at you can lead to a lot of stress.   Autistic students are not stupid, they know when others are being cruel even if they don’t understand the phrases and words they use.   What they do understand is that people are picking on them and being unkind.    Sometimes the other students are just doing the same as everyone else and don’t mean to hurt the autistic student particularly.  Sometimes there is misunderstandings.   But these are important and real dilemmas for autistic students that can show in their classroom behaviours.  I’ve known students who shout out, try to make jokes, do outrageous things to get the attention and approval of their peers.  But then there are students who pretend to be friends with the autistic student and egg them on to be disruptive.  Then they sit back and enjoy the autistic student getting into trouble.  This cruelty happens too often.  Schools who punish their behaviour without providing support to develop healthy friendships and recognise the early signs of bullying, are compounding the autistic student’s isolation and anxiety.
  • Workload. The most academically able autistic students are vulnerable to workload stress when they go to secondary school.  It’s not that they are less able but often the pace, the switching attention between ideas, content and then the next lesson to another subject, challenges them.  Autism often means that the student is dealing with sensory overload, anxiety about getting things right, struggling to make sense of ambiguous instructions and organisational challenges on top of listening to the teacher, taking in the learning and understanding the expectations of the task.   I am amazed at my students who tell me that this is how it is for them and yet their teachers don’t realise because they seem to hold it together in class.   One of my students told me that his hearing is so sensitive that he has to spend so much energy trying to ignore every scrape, sniff, cough, traffic sound and everything else he can hear, that concentrating on the lesson is really hard.  He manages it but if someone next to him makes a loud noise or scrapes their chair on the floor he shouts at them in his shock and distress.  And then it is him who gets told off (another assault on his hypersensitive hearing).
  • Homework.   For so many autistic students, homework is torture.  For many the line between home and school is a clear one so to do school work at home doesn’t make sense.   My autistic students often tell me they don’t understand the instructions, they can’t hear clearly when writing them down or the teacher doesn’t give enough time to do so, and when they get home they are so overloaded from the school day they have used up all their energy and cannot function to do homework.  (See spoon theory – here). Many autistic students want to do well and work so hard to mask their difficulties but failing at homework regularly compounds stress and anxiety and can lead to oppositional or withdrawn behaviours.  There are lots of ways to make homework more successful. See my post about that.
  • Anxiety.  Sensory issues cause a lot of anxiety along with worrying about friendships, tests, homework, being punished for getting something wrong and many other things that we often tell students not to worry about. However, worrying is so common in my autistic students that it is the first thing I investigate when behaviour is mentioned.   I also investigate what they are worried about when they are seeming to be good and have it all together, because being autistic in a secondary school is not easy.   Anxiety grows with puberty and often my students become much more anxious at the beginning of Year 10 when GCSE pressures really become an issue and the fear of not knowing what they might do when they leave school is added.  Anxiety is not part of the autism diagnosis but I rarely meet an autistic teenager who isn’t anxious.  This is where I find Emotion Works a great resource to explore their anxieties and enable us to provide the right support that they need.   Even anxiety about receiving sanctions can lead to disruptive behaviour – not because they want a sanction but because they are so worried that they will, they cannot concentrate, become angry easily and cannot cope in class.

All I am asking is that if an autistic student’s behaviour is deteriorating, causing them to receive sanctions regularly, please do not assume the student is being difficult “on purpose”.  There is always a reason and most of the time there is anxiety, stress and a difficulty they cannot communicate in any other way.  We can work with the student and parents to find out the root cause and then support that.  Then we can meet their autism needs.  It might be tempting to blame parents, too much screen time or puberty. In my experience, the root is nearly always something at school.  We can do something about it if we understand what that may be.  Even if it is something outside school, such as family break up for example, there is a lot we can do to make things less stressful at school and support the student to calmer behaviour.  I can’t give you an extensive list of what to do because every child will need a different solution.    But here are some examples.

So what do we do?

Child A in Year 10 who had previously behaved well, started to walk around the school in the opposite direction to the one way system, and shouting at teachers who reprimanded them.  The school discipline policy was implemented every time they did and they were given school time detentions after a number of warnings.  They didn’t attend the detentions and this was flagged up by the senior leadership team and was referred to the SEND department for investigation.   Their parents were called in for a meeting.   At this point, I was asked to work with them for a session and found out that at the root of the behaviour was an issue the student had become very upset about and felt that no-one was listening.   It also transpired that they didn’t go to detentions because they had no idea what a detention was and what they would do at the detention.   They thought they would be kept at school all night and not be allowed home at all.

Once we understood, we could help this autistic student.   We looked at the issue they were upset about, mapping out all the information they could tell me about it.  I was able to add some information to the mind map to show them why the teacher had made the decision they didn’t like, and that they could still benefit from the course of action that they were now having to take.  Secondly, we discussed the school behaviour policy and they agreed that it was fair to receive a sanction for deliberately breaking the rules.  All we had to do was write a social story to explain this and what would happen in a detention, how long they would have to be there for, and when it would finish.  They agreed to do one detention (supported by the staff) and then the matter would be finished.  The student also requested a report card (usually used for behaviour monitoring) so that they could monitor each lesson.   This card had positive targets for them to achieve and included the support they could ask for in lessons.  This was very successful and helped the student and the teachers to establish a very consistent approach.  The student behaved in the way they did because they were confused, upset and angry.  The support we put in place explained things properly and made a plan they could accept and carry out.   No further sanctions were needed.

Child B was in tops sets and seemed to cope well at the beginning of Year 7.  However, after the Easter break they became oppositional in some lessons and started to run away from school.  Every time a teacher tried to implement a sanction from the school behaviour policy they would complain loudly and argue with them, occasionally throwing something across the room in the direction of a teacher.  They had a ‘time out’ card which worked in some lessons, but some teachers refused to let them use it.  They were often late to class, spent lessons with their head on the desk and missed more and more of their learning.  Homework wasn’t completed and parents reported that they were having meltdowns after school most nights.  At first the school implemented its behaviour policies and sanctioned the student with detentions, but that is when they started to abscond from school.  When we investigated what was worrying the student we found out that because they were bright, it had been assumed they would be fine in secondary school.In reality, they were struggling with the more abstract content in some lessons, particularly English.  They had significant sensory needs which they’d managed to mask in primary school, but was now struggling to manage in the noisy, busy corridors and break times at secondary school.   This student was trying to function with an extremely high level of anxiety each day and their meltdowns at home were a symptom of their distress and inability to cope.

With parents, we arranged a reduced timetable of one subject for a term, which would then be reviewed.  They were taken out of two assemblies and one lesson a week and this time was spent with a TA to go over their workload, homework and explain anything they were unsure of.  The SENCO and student put together a one page profile to give to all their teachers which reminded them of his autism and the support that would help him in class.  They were reminded to make sure they could use their time out card and to explain things in smaller chunks to the student, checking that they understood.

Summary

Secondary schools have fewer TAs and tight budgets but understanding the behaviour and communication of autistic students is vital.  There are more complex students than these examples, but Emma and I have spent many years working with secondary schools to support complex needs and seen students get through each school year and be supported in the challenges they face.  Occasionally we have supported a move to a more specialist autism provision for the sake of the student, and at other times we have prevented exclusions.  You may need outside help, but listening to the student, acting upon their concerns and supporting their needs is achievable in most cases.

This year we supported with our schools a number of students doing their GCSEs.  The schools (especially led by the SEND departments) have adapted and supported the students from their shaky early years in year 7 and 8, through the puberty issues and relationships challenges and been there for them when things have got tough and stressful.   There is nothing better than seeing those students sit their GCSEs and knowing you have enabled them to survive and even sometimes thrive because you didn’t see behaviour as something to punish but as a call for help that you could answer.

I’m not saying it is easy.   I work with schools who put so much effort into supporting their autistic students and keep them going through the times that their behaviour shows us that they are not coping or trying to deal with a problem or worry.   These schools read the behaviour as communication and try to ‘listen’ to what the student is communicating.   Sometimes it can be dealt with quickly, other times it can be a continuous support package throughout the whole of secondary school.   This post is an attempt to share that and show the necessity and positives of being flexible when ‘reading’ behaviour in autistic students.