Autism
Movement Differences
Understanding movement differences in a non medical way can be key to understanding and including people who otherwise may seem very challenging and difficult. All people with autism, but also those with labels such as Tourettes have movement differences creating difficulties in:
- Stopping
- Starting
- Switching
- Combining
- Continuing
- Executing complex movements
All of us in the world moving around in human bodies experience difficulties in one or more of these areas. But some people have much greater issues – the volume has been turned up and the difficulty is much greater.
Framework for Support
Donnellan and Leary have a great credo for supporting people with movement difference:
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You’re OK
Each person is OK just the way they are. Like all of us, people may want to change things in their lives, learn new skills, fit in, etc. Support includes recognition of a person’s current attempts to participate.
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Let’s Collaborate
Effective support includes the person in choosing goals for change and preferences for learning.
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Support to Organize
Focuses on working out the right prompts – respectful accommodations that peole can use to get around difficulties.
Read Derek Wilson’s book review of this fascinating account of movement challenges – direct from personal experience. Featured on Radio 4 Book of the Week.
Rethinking Autism: Implications Of Sensory And Movement Differences
‘Detailed personal descriptions of movement and sensory differences found in other disabilities have given us some additional insight as to what it may be like for a person to deal with various symptoms, such as compelling impulses, a loss of conscious control, lack of initiation, akinetic moments and unusual ways of being in the world (e.g. McGoon, 1994). Frequently, the person has both the challenge of the movement difference and burden of blame and misunderstanding. In Strandt-Conroy’s (1999) research, it was often necessary to use vignettes from people with other sensory and movement differences to enable the autistic interviewees to recognize their own experience. Most expressed gratitude for the opportunity to learn about movement differences as they often had blamed themselves for their behavior and thought they were alone in having these difficulties…’ by Donnellan, Hill and Leary…
Read more of this fascinating article here.
Sensory Super Sensitivities
Key area to explore when planning and delivering the inclusion of a child or young person. Sometimes an autistic child may behave in a ways that are hard to understand.
Often this is linked to super sensory sensitivities. A person who struggles to deal with everyday sensory information can experience sensory, or information overload. Too much can cause stress, anxiety, and even physical pain. This can result in withdrawal, shut down, challenging behaviour or meltdown.
Anything written by Gail Gillingham is well worth learning from and she has written several books and is on line. This what she says as one example:
‘The human brain receives all of the information that we know about the world and each other through our sensory system. There is no other way for this information to be gathered. People on the autism spectrum describe their experience in this world as that of being overwhelmed by the sensory stimulation they receive from the environments they are forced to deal with. Touch is like a tidal wave, sounds are too loud, language distorted, vision fragmented, focusing on each piece separately rather than the whole, odors often sickening and tastes unbearable. These descriptions have now been validated through research on the specific construction of the brain. Researchers at the University of Georgia (Casanova et. al ) have discovered that people on the autism spectrum have more mini columns in their brains and that these mini columns are smaller than those of a typical human being. The direct result of this difference is that information through the sensory system is received at a heightened level, overwhelming the system.
It is important to realize that there is a huge difference between a system that is overwhelmed by the amount of information it receives and a system that is “dysfunctional”. The sensory systems of those on the autism spectrum are NOT dysfunctional but are actually working at a higher level than those of the rest of us. They respond like the systems we attribute to fictional super heroes such as superman. The problem is that we do not realize how this level of response affects the human body. Superman would react like those on the spectrum if he was a real person.
Understanding that their sensory systems work at a higher level than ours does means that we must be very careful of any treatment modality that we use for those on the autism spectrum. The higher response to incoming stimulation means that the body is constantly having to deal with too much information which increases the level of stress on the body, which turn reacts with higher levels of anxiety. The symptoms of autism are actually the direct result of heightened levels of anxiety. Any treatment program that does not understand and respect this factor is in turn raising the level of anxiety, thus causing more distress to the body of the person with autism.
When a body reaches a danger level of input it will automatically go into shut down. Shutdown feels like a very safe place as there is no longer any response to sensory input of any kind. However, it is also a very dangerous place as the body is also no longer registering any messages from itself such as hunger, thirst, pain, or the need to go to the bathroom. Many of the myths that have surrounded autism for years such as the lack of response to pain are actually descriptions of shut down. Many of the treatments that have been developed for use in the field of autism actually are based directly on pushing a person into shutdown. This is extremely dangerous as it leads to another major problem in time: constipation. If you don’t feel the need to go to the bathroom, you don’t go, which in time leads to problems with the bowel system. If you don’t feel hunger or thirst you may go for days without food or drink and put yourself into a serious situation. If you don’t feel pain when you have injured yourself, you can do much damage to your body by using something that has been injured. We must be willing to make the effort to understand and respect shutdown if we are going to keep people with autism safe.’
See Paula Kluth’s book and web site for lots of ideas for accommodating sensory needs. Paula Kluth’s web site
For a useful UK link on understanding and helping with sensory sensitivities, click here.
Anxiety
Anxiety is like stress in a jug – as the stress builds up the jug fills – when there is too much for too long or too intensively – the jug overflows – meltdown or shut down in human terms!
‘People with autism claim the repetitive and stereotypic behaviors they partake in are used to control their body’s reaction to their environment. They describe the high levels of stress and anxiety they experience as a reservoir which fills and empties during each day completely dependent on the experiences they have. The reservoir is rarely totally empty because their level of response to input means that they are constantly overwhelmed by the environments in which we feel completely safe. As the reservoir fills, they gradually lose their ability to communicate and socially interact with us. Their repetitive and stereotypic behaviors increase as they are used to create endorphins to decrease the body’s response to the anxiety. This lowers the level of anxiety. When the reservoir (or anxiety) is low, communication skills are higher, social interaction skills are more accessible and the stereotypic behaviors decrease.
Input that leads to anxiety comes to the body from three different areas:
1. Over stimulation from the environment (a threat to ones safety). May come from sensory stimulation from the environment or from their reaction to the emotional state or acceptance or rejection of other people in their presence.
2. Over stimulation from within: This can be due to emotions: both positive (pleasure, excitement), or negative (anger, fear, anxiety, shame, failure). They also may indicate a physical need such as hunger, thirst, pain, or a need to sleep. This stimulation may also be due to a gastrointestinal or medical problem or may be connected to reminders of memories of past experiences that were negative in one way or another.
and/or
3. Boredom: they have very busy brains, which must be kept busy at all times or they are in trouble. Each individual uses a variety of different coping skills to keep this brain engaged.
We must fully understand and accept that any behavior that a person on the autism spectrum uses is a solution to a problem in the moment, no matter if it is what we see as a good behavior or inappropriate. We must also realize that the environment they are experiencing is completely and totally different from that which we are experiencing because of their response to sensory stimulation. Only then can we begin to work effectively with these people. Paying attention to the times that they take part in protective behaviors allows us to determine the level of anxiety that they are experiencing from one situation to the next throughout the various times of the day. It also will allow those who work with individuals with autism to understand their level of anxiety. Once you recognize that anxiety is occurring, observation of the environment will allow you to determine which of these three situations is occurring……’
Anxiety/Agitation Levels
Levels of anxiety and agitation are demonstrated through the use of a variety of different behaviors which are unique to each individual. The following are the different behaviors are examples which allow us to measure the level of anxiety/agitation a person may be experiencing at a certain moment in time. This list is only an example and not to be taken literally as the way you should expect any person to react. A list of this type should be created for each person you work with over an observation period so that you and others can be clear as to what level of anxiety the individual is experiencing.
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Low agitation: is able to concentrate on whatever activity that they are involved in for long periods of time. Able to follow directions and complete tasks. Calm, can be still or involved in an activity. Speaks in a low tone and shares information with others. Looks directly at their work or at another person. Responds to you the first time you say something. Follows directions when given in a soft voice and given time to respond. May not appear to be listening, but follows through if given the time. Initiates a variety of activities and explores the world. Asks for help when needed. May touch other people gently.
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Solution: not needed. This is when those on the spectrum are not only able to do things on their own the best but also is able to learn and engage with others. Our goal should be to have anyone with ASD at this level as much as possible each day.
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Buildup: Rising agitation level: Interactions and directions take more time and effort for them to respond to, but they will respond if they are repeated or perhaps after being given a tactile prompt. Will solve their problems on their own with no input to others, which includes leaving to do what they needs to do. Will tell you what they are doing if you ask. Will find or obtain their own objects needed for calming. May lean back up against another person for deep pressure or takes their hand or arm for comfort. May use a whiny voice to explain what they wants. May have a hard time sitting in one place for any length of time. May move away from the stimulating areas of the room. May use peripheral vision to check out what is going on. Body may become tense. May cover their ears as noise level increases. Echolalia may appear.
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Solution: Acknowledge what is happening for them in the present moment and tell them that they are doing well in spite of the discomfort they are feeling. Respond to all of the communication that they are sharing with you (verbal, body, gesture’s, behavior) and redirect them to new activities. If possible reduce the environmental stimulation they are experiencing in any way you can. Increase the level of mental stimulation to ensure boredom is not a factor.
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Survival Mode: Medium agitation level: Very low response to anything that anyone else says. Voice becomes loud and high pitched. Repetition of comments gets more and more demanding as agitation increases. Gives orders to other people in the room. Have a hard time staying still or sticking to one activity for any length of time. Reaches out for others for comfort such as holding the hands of two people when on the field trip. Body movements such as running become more awkward. May squeeze their head with both hands. Hands may be clenched. May walk on toes. Needs objects for calming and may not be able to find them themselves or get very upset if they are misplaced. Body becomes very tense. Body may shake. Repetitive behaviors will be used such as pacing or rocking or flicking ones fingers in front of ones eyes.
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Solution: Redirect, redirect, redirect. At this point acknowledgment will only make things worse.
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Survival mode: High agitation level: Needs to have control of everything and will take it with force if necessary. Charges through things and people without appearing to see them. Will push you away. Cries. Screams. Hits themselves on their head. Bites themselves. Hits others. May verbalize a lot of repetition or contradictory statements “I want to….”I don’t want to…” The language is not meaningful, but part of the agitation. May throw themselves on the floor. Little response to input from others. The use of verbal or other means of communication has decreased significantly. Lack of cooperation on tasks or activities. The use of repetitious behaviors will increase significantly. At this point they are very close to a meltdown. It is imperative that people who are with them when they have reached this state listen to them: to their words, to the pitch of their voice and to their body language. Any attempt to control them will push them over the edge into meltdown and may result in aggression towards you. Although listening may appear unreasonable at times, this is what they need. They are incapable of listening to you any more.
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Solution: Allow them to have the time and space to calm themselves. Trying to teach anything at this point is likely a waste of time.
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Shutdown: Very calm and still. Peaceful. May appear not be present in their bodies. May appear to look through you.
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Solution: Although this may appear to be a place we want them to be in it’s not a safe place. Bring them out of it with input that matches their needs: tactile, auditory, visual, or smell. Using the sensory system that they chose to us for their calming behaviors is likely the best choice.
Meltdown: Meltdowns typically look like severe tantrums but they are actually panic anxiety attacks if you compare them to the definition of these attacks as found in the DSM IV (The Diagnostical and Statistical Manual of the American Psychiatric Association). They may include aggression to others and to themselves in a variety of ways. In this state they are out of control of what their body is doing. They will not be able to take in information or learn while in this state so it is a waste of our time to try and teach them anything at this point.
Solution: The best treatment is to allow them to withdraw to a quiet place until they can calm themselves down. Each person will have their own calming techniques. It is important that we respect them and allow them to use them. Any input from anyone else at this point will only cause more distress.
Anxiety can be due to positive and negative experiences. When creating a list like this be aware that changes in the anxiety responses often occur as a person matures, so there may have been others in the past, and there will be new ones developing in the future.
It is very important that anyone who is interacting with anyone with autism does NOT take any of their behavior personally. This is NOT about you. It’s about a child or an adult dealing with a body that is not working for them as well as yours is for you…..’
Read more here… Gillingham 2017
Matching People with Autism to Real Jobs
Read this excellent article in the Guardian. Making up the 1%
The German software company SAP aims to have 1% of its workforce comprises people with autism within five years – adding up to about 650 people. The multinational works with Specialisterne to employ people with autism as software testers, programmers and in data quality assurance. The project was piloted in Germany, India and Ireland and later spread to North America.
Educators will find some excellent sections in this book by Paula Kluth on practical ways to tackle movement differences.
Paula Kluth’s web site is dedicated to promoting inclusive schooling and exploring positive ways of supporting students with autism and other disabilities. Most of her work involves collaborating with schools to create environments, lessons, and experiences that are inclusive, respectful, and accessible for all learners.
Amali
My name is Amali, I’m angel or pest
The Asperger chick in the Autism nest
I’m bold and I’m stubborn, I’ll always ask why
But I don’t know what tears are
If I see mummy cry
I struggle to listen or sit still in class
I need constant support just to keep me on task
My few friends lose patience, unsure what to say
My actions are clumsy
I don’t know how to play
I have no sense of danger, no signals, no codes
I chat to all strangers and dawdle on roads
I laugh loud at nothing, I fidget and spill
Obsessed with my laptops, I rarely stand still
Some kids call me stupid and try make me mad
They can’t even tell if I’m happy or sad!
I’m not invited to parties, there’s no girlie chats
They don’t share my fixation with animal facts
I’m over affectionate, don’t quite know why
Cos I don’t know what love is
And so seldom cry
Both bossy and anxious, I struggle with games
So I sit by myself but they still call me names
Yet I remember in detail each journey I make
The hum of the strip light that made my ears ache
That man outside Tescos..
The dog with one eye
The time of the train..
And when dad chased that fly…
I know I am different…
I know this is true
Cos I don’t see the world through the same eyes as you
I’m blessed with Asperger –
It’s the essence of me
A light and shade world where I’m happy to be
As fierce as a lion, as meek as a lamb
I am Amali.
Amali I am.Written by me, her mum, as I watched my daughter blossom in a world that no longer defines her because of her autism, but allows her to embrace her difference in a rainbow of possibility.
Written by: Yvonne Ugarte
Great Autism Links
Social Stories™ were developed by Carol Gray, President of The Gray Center. A Social Story™ describes a situation, skill, or concept in terms of relevant social cues, perspectives, and common responses in a specifically defined style and format.
The goal of a Social Story™ is to share accurate social information in a patient and reassuring manner that is easily understood by its audience. Half of all Social Stories™ developed should affirm something that an individual does well. Although the goal of a Story™ should never be to change the individual’s behavior, that individual’s improved understanding of events and expectations may lead to more effective responses.
Find out more on the Gray Center Website
Visit the Disability Studies Quarterly Website and take a look at Volume 30, No 1, this issue is about autism and full of some great work by self advocates, including Amanda Baggs and Tito.
Paula Kluth’s web site is dedicated to promoting inclusive schooling and exploring positive ways of supporting students with autism and other disabilities. Most of her work involves collaborating with schools to create environments, lessons, and experiences that are inclusive, respectful, and accessible for all learners.
Autism National Committee (AUTCOM) This is the only autism advocacy organization dedicated to “Social Justice for All Citizens with Autism” through a shared vision and a commitment to positive approaches. This organization was founded in 1990 to protect and advance the human rights and civil rights of all persons with autism, Pervasive Developmental Disorder, and related differences of communication and behaviour. In the face of social policies of devaluation, which are expressed in the practices of segregation, medicalisation, and aversive conditioning, they assert that all individuals are created equal and endowed with certain inalienable rights, and that among these are life, liberty, and the pursuit of happiness.
Sleep problems are common among children and adults with autism or attention-deficit/hyperactivity disorder (ADHD). While those with autism spectrum disorder or ADHD may be more commonly affected by sleep disorders and other sleep challenges, a lack of sleep can exacerbate symptoms of autism or ADHD. However, with healthy sleep habits and treatment, sleep problems and the daytime challenges they present may be alleviated or eliminated. For more on mattresses and sleep guides for helping people with autism – Click here
Neurodiversity.com is a great site for all kinds of links and resources related to autism. A true labour of love.
Have a look at this inspiring clip on YouTube. Finding Mike – Boy with Autism Wins 4th place at State Science Fair.
Atlantic Magazine – Autism’s First Child – As new cases of autism have exploded in recent years—some form of the condition affects about one in 110 children today—efforts have multiplied to understand and accommodate the condition in childhood. But children with autism will become adults with autism, some 500,000 of them in this decade alone. What then? Meet Donald Gray Triplett, 77, of Forest, Mississippi. He was the first person ever diagnosed with autism. And his long, happy, surprising life may hold some answers.
Want more reading on Donald Gray Triplett (the first boy diagnosed as autistic)? Click here for a BBC article.
‘Living with Autism and related difficulties is very challenging but also very rewarding, I’ve been living with it for all my life and I still haven’t got a clue about it! One thing that is very difficult is getting the support you need and in some cases the funding for it, Person centred planning is brilliant I must say. I felt it was very helpful getting my point across surrounded by the people who are going to take a course of action for my future, with Person Centred I was able to map my ideas visually which works tremendously for someone with ASD’.
Mark is doing really well and has a paid traineeship in a Museum before going off to University.
Thiandi Grooff,student of the international university of Amsterdam, the AUC.
An interesting speech…. download here.
Act Normal, The essential need to belong and be different at the same time; a personal account on common views on “normality”and “disability”.
Meet Thiandi at work and launching her new book at ‘Amsterdam University’ on Dutch TV here.
The Authorities Are Always Right
A mother’s battle to have her son’s capacity to understand and communicate with support recognised. This film tells the story of Nihal Armstrong, a boy with Cerebral Palsy whose misdiagnosed learning difficulties saw him spend some of his primary years within special needs education. Have a look at it here.
Training
Our well received – non medical model- training days on understanding and including children or adults with autism explore movement differences, sensory sensitivities and anxiety. We also explore the role of other children and adults in creating circles of friends or support and the need we all share for relationships.
Alternatively we can create a training workshop just for you or a personal session for you or your family to strengthen your understanding of these differences and how to respond to them.
Contact us to discuss your training ideas or check out our full training list.
Links
Read more by following these links: