Understanding The Autism Spectrum, & Information-Gathering Tool For Teaching Staff
I often go into schools and I see children who are struggling and finding everything very hard, yet the root of these difficulties is often unclear. Some of these children have perfectionist traits, and will not make a mark on paper for fear of making a mistake. Other children appear sociable yet have difficulties initiating interactions appropriately and responding to others – I could list many more behaviours, but that is another blog entry. These children are easy to misinterpret, and of course, they might not be on the autism spectrum, but they often are. And they have often suffered for a long time as a result of being understood through neurotypical eyes, ie someone who does not have ASD.
Seeing The Person Underneath
It is important for those working with children to be aware of signs and behaviours to look out for, and to be able to observe and gather information in order to access the appropriate help and support for children. But it’s also important to be able to see beyond the traits of being on the autism spectrum, to the person underneath.
We Are All Unique
The spectrum in Autism Spectrum Disorder (ASD) can be hard to appreciate and, to an extent, hard to comprehend. It stretches out like a vast African plain; it is so huge it can be hard to see the beginning and end. Not only is it a vast landscape, but it is also a varied one.
There are core features, but these features do not look exactly the same in every person who is on the spectrum. We are all unique individuals, regardless of whatever conditions we might have. We are all coloured and shaped by different experiences, relationships, desires, interests, etc. Having a condition, such as an attention deficit or Autism Spectrum Condition does not define who we are. Ideas about what ASD is and what it isn’t, and ideas about the impact it has on a person can result in losing sight of the person and seeing only the condition. Yes, many people have ASD, but it does not define who they are. It is an aspect, but it is not the sum of all the parts that make a person.
Interpreting Through Neurotypical Eyes
The fact that the spectrum is so broad and that the core features can look different in different people, can lead to misinterpretation, misdiagnosis and misunderstanding of people. Whilst we may look the same on the outside, research has found that we are wired differently. This results in differences in areas such as perceptions, sensations, thoughts, understanding and use of language. Of course these differences exist between all human beings, but it is a matter of degree. These differences can be invisible on the surface, and we can misunderstand each other because we are evaluating and interpreting through different eyes. For example, it is relatively easy for a neurotypical person to:
- read someone’s facial expression
- predict and infer the underlying emotions
- understand the tone of voice
- use their knowledge and experience of the world, and of that person, to work out how the person is feeling
- respond in an appropriate way
What Does Happy Mean?
However, this is not as instinctive and immediate for people with ASD. As a result, using words like happy, sad, or angry do not help clarify situations, as we do not always have a shared meaning for words that describe emotions. The parameters of these words are vague and woolly, which makes them hard to understand. When I say things like, “I hope you feel happier today,” to a very good friend, who has ASD, she says, “I don’t understand that word. What is happiness? What does happy mean?” It is as if we are speaking different languages sometimes, and we are trying to teach each other. My friend and I have learned that we have to avoid assuming anything! We have learned that we have to explain everything, including non-verbal communication.
It is easy to assume that everyone recognises and understands the tone of your voice, but they don’t. It is easy to assume that everyone can read your face and interpret it accurately, but they can’t. For years my friend and I had heated discussions over what seemed to me at the time to be tiny little things, but they weren’t tiny little things. They were great big barriers to our relationship and understanding of each other. Since her diagnosis of ASD we are now climbing the walls of that barrier and it is a joy for both of us (please excuse the use of a non specific, subjective word that has no clear parameters).
Girls and ASD
Much has been written recently, and continues to be written, about girls and ASD, and about intelligence and ASD, both of which make it harder for people to see differences and to respond to the differences appropriately. Being female and having a certain IQ allows girls to mask their difficulties and this can lead to depression, self harming, eating disorders and suicide. Here is a link explaining how girls mask their symptoms of ASD http://www.autism.org.uk/about/what-is/gender.aspx. 25% of young people on the spectrum are reported to have tried to kill themselves (Young Minds, 2016). A major part of this often comes from trying to make sense of the world, which seems utterly unpredictable and chaotic, and from being completely misunderstood. No one should suffer like this. No one should be so misunderstood.
Information Gathering Tool For Children With Suspected Social Communication Difficulties
If you work with children and young people, you might want to download this information-gathering tool PDF. Perhaps there are children who you have niggling worries about, children you cannot quite fathom, bright children who are struggling to access the curriculum and girls who are not quite the same as their peers, but you cannot put your finger on what the difference is. Gather information on these children to help you decide what to do to help them and to get the right support. It may be that they have social communication difficulties, which could be the result of ASD.
When you have gathered enough information, discuss it with your SENCO / Inclusion Manager to decide if you need a referral to an outside agency, e.g. Speech and Language Therapy, Occupational Therapy, CAMHS (Child and Adolescence Mental Health Service) or if a referral for Paediatric Assessment is needed. Talk to parents and carers and show them the information you have gathered to help them understand your concerns and to involve them in the discussion around next steps. Unfortunately, many NHS Speech & Language Therapy Services do not have a pathway for high functioning children on the spectrum, although they might do an initial assessment. Some counties have ASD monitoring groups or support groups that work with schools and these would obviously be helpful.
If you are the parent or teacher of a child who has social communication difficulties and you would like to chat about assessment and diagnosis, please do get in touch.