How Has Our Understanding Of Asperger Syndrome Evolved
1944: Austrian pediatrician Hans Asperger described four strikingly similar young patients. They had normal to high intelligence. But they lacked social skills and had extremely narrow interests. The children also shared a tendency to be clumsy.
1981: British psychiatrist Lorna Wing published a series of similar case studies. In it, she coined the term Asperger syndrome.
1994: Asperger syndrome listed in the Diagnostic and Statistical Manual of Mental Disorders .
2013: Asperger syndrome and other previously separate types of autism folded into one umbrella diagnosis of autism spectrum disorder in DSM-5.
Should We Say ‘with Autism’ Or ‘autistic’ Here’s Why It Matters
Should we say “with autism” or “autistic” when talking about kids or adults on the spectrum?
I get this question often. I also have readers ask me to change the way I use the terms in this blog, and hear a lot of confusion from my friends, family, and the professionals who work with my son, a non-speaking 7-year-old on the spectrum.
With autism, as with all things, how we speak about it reflects how we think about it, our priorities in relation to it, and what we believe to be the truth of it. For these reasons, many advocates are challenging the use of “person-first” language and reclaiming the term autistic.
At face value, person-first language, which is what Parents uses when writing about ASD, makes sense. It puts the person before the disease. We don’t say things like “my diabetic brother” or “my cancerous mother.” Those are cringe-worthy constructions, indeed, and many people argue that saying “my autistic son” is in the same league.
The problem here, however, is both simple and complex. By using person-first language and saying “my son with autism” in conversation, I’m calling his autism a disease, like cancer or diabetes. Wrapped up in that is the notion that a disease needs a cure, that my child needs “fixing.”
It’s for these reasons that many people on the spectrum refer to themselves as autistic. There’s a wonderful, detailed explanation of this on the Autism Self-Advocacy Network’s website, but some key points of their stance on language are worth quoting here:
What Is Asperger Syndrome
Asperger syndrome, or Aspergers, is a previously used diagnosis on the autism spectrum. In 2013, it became part of one umbrella diagnosis of autism spectrum disorder in the Diagnostic and Statistical Manual of Mental Disorders 5 .
Typical to strong verbal language skills and intellectual ability distinguish Asperger syndrome from other types of autism.
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I’m Not Staring I’m Actually Completely Dissociating From My Vision I’m Not Looking At You That Thing Or Anything That’s Just Where My Eyes Happened To Be Pointing When I Went ‘inside’ I Also Dissociate From My Vision Whenever I Am Actively Listening
“It wasn’t until I was 19 that someone pointed out that I was always ‘staring at their tits’ whenever I was talking with them. No, lady, your tits are just ‘down and out of the way,’ where my face is always pointed. Nowadays, I usually have the presence of mind to add ‘off to the left’ to my ‘down and out of the way.'” u/Jarhyn
Attention Deficit Hyperactivity Disorder
Symptoms of ADHD include:
- finding it hard to concentrate and getting distracted easily
- acting without thinking
- finding it hard to sit still
People with ADHD may need extra support at school or work. Sometimes they need to take medicine.
- problems with reading, writing and spelling
- clumsy movements and problems with organisation and following instructions
Extra support at school can often help.
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Use Of Information Collected From You
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Domain B: Repetitive Or Restricted Behaviour Interests Or Activities
Restricted, repetitive patterns of behaviour, interests or activities in at least two of the following:
- Repetitive motor movements, use of objects, or speech.
- Insistence on things being the same, inflexible and insistent on routine, or ritualised patterns of verbal or non-verbal behaviour.
- Highly restricted, fixated interests that are uncommonly intense or focussed.
- Extremely reactive or not reactive at all to sensory input, or an unusual interest in sensory aspects of the environment.
Spell Structure Positive Empathy Low Arousal Links
Structure:
Positive
In order to explore the potential of individuals with ASD, it is very important to plan intervention programmes that are based on careful assessments, which in turn determine realistically high expectations. Positive feedback and motivators can be used to ensure that appropriate behaviours are continued.
Consistent behaviour support plans must be put into place while dealing with challenging behaviours. Identifying individual strengths and building on them is the key to success in intervention.
Empathy
Seeing the world through the eyes of individuals with ASD is the most important aspect of working with them. To gather a better insight into their world, it is essential to understand their experiences by viewing things from their perspective. Some individuals who are non-verbal have a lot to say through their behaviour, hence effective support workers/professionals must be endowed with personal attributes of calmness, sensitivity, positive regard and an analytical disposition.
Low Arousal
Low arousal does not mean no arousal. Individuals must be exposed to a range of experiences but this should be done in a sensitive way considering the fact that they could be oversensitive to certain stimuli.
Links
The SPELL framework can be applied across all individuals with ASD and can also be used as a complementary approach to other methods of intervention.
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Autism Wandering How Do You Spread The Word
Parents of children with autism are working hard to spread awareness about the diagnosis. Social acceptance and awareness are both critical to ensuring that these children grow into successful adults and are kept safe in their journey. However, parents cant do this alone. Their advocacy is what drove Kevin and Avontes Law into action, but it is now up to our communities to spread the word of the dangers of wandering and what can be done to prevent it.
Wandering is a common danger for children with autism.
Parents fear every day that their child will elope from even the safest places, such as home or school. Many parents have referenced too many close calls with children who were found near bodies of water or high-traffic areas. More specifically, drowning is one of the biggest safety concerns of children with autism, because of their tendency to wander and inability to perceive danger accurately. This is a harsh reality for families who are desperate to keep their children safe, but until now, have not had the resources to enlist community assistance.
Education and training will be available.
What Is The Prevalence Of Autism
The exact prevalence of autism in Australia and internationally is unknown.
The Australian Bureau of Statistics reports that there were 205,200 Australians with autism in 2018, which is around 1% of the population or 1 in 100.
Internationally this rate varies significantly, from 1 person in every 59 people in the USA, to the average prevalence across Asia, Europe, and North America is between one and two percent.
Statistics also show that:
- the number of Australians diagnosed with autism increased by 42% between 2012 and 2015
- three out of four people diagnosed with autism are young people, aged between 5 and 24 years and
- 1-2 out of 4 Australians diagnosed with autism are female.
While the reported prevalence of autism varies around the world, there has been a clear increase in the number of people diagnosed on the autism spectrum in recent years, but this doesnt necessarily suggest that there are more autistic people in the world than there were ten or twenty years ago.
Evidence suggests that the increase is the result of a number of cultural and clinical factors, including social influences driving greater awareness of autism, and improved diagnostic procedures and changes in diagnostic criteria allowing more people to access a diagnosis.
According to Professor Whitehouse, from Australias Autism CRC, research shows the majority of the increase in autism prevalence over this period was due to an increase in diagnosing children with less severe behaviours.
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How Is Asd Diagnosed
There is no simple medical test for diagnosing ASD.
To diagnose a child with ASD, a healthcare professional observes the childs levels of:
- communication
This could include the childs:
- verbal skills
- how they relate to others
- behaviours related to their interests and activities
- repeated actions related to how they speak, move or use objects
To determine the severity of ASD, the healthcare professional observes the amount of difficulty the child has with:
- social communication
Medical professionals use the Diagnostic and Statistical Manual for Mental Disorders to evaluate ASD.
If a health care provider thinks that your child may have ASD, get a referral for a diagnosis. A specialist will create a detailed description of your child’s strengths and challenges. A team of health professionals may work together for this assessment.
Testing for ASD will also make sure that this is not a different condition. For instance, sometimes hearing loss can explain your childs unresponsiveness in social situations or when their name is called.
What Behaviors Should I Accept And What Behaviors Should I Change
As parent advocates, we accept and embrace our kids, and we want the world to accept and embrace them as well.
But also as parent-advocates, we have to, you know, parent our kids.
And sometimes accepting and embracing can kind of feel like we stopped parenting altogether.
So heres the dealIt really doesnt matter if what your child is doing is autism or behavior.
What really matters isIs it harmful?
Harmful behaviorseven if theyre Autistic traitsshould be changed.
Now you might be thinking, hold the phone Kaylene You preach constantly about not changing Autistic kids And now this?
But heres the thing: If a behavior is causing harm, the cause of the behavior doesnt justify ignoring it.
Now, the cause of the harmful behavior is important for solving the problem or changing the behavior but it shouldnt determine whether or not it is changed.
Now you might be thinking Okay, then when is a behavior harmful?
And eventually, Ill write an entire post on that specifically. But for now, here are a few questions I run through when determining this:
- Does the behavior harm themselves?
- Does the behavior harm others?
- Does the behavior ignore other peoples consent?
- Is the behavior illegal?
And if you go through this list and your childs behavior is harmful, it means that as a parent you get to solve that problem with your child.
But its important to remember that solving the problem isnt about harsh punishments or strict rules.
And you dont have to do that alone!
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How Does Asd Affect Communication
The word autism has its origin in the Greek word autos, which means self. Children with ASD are often self-absorbed and seem to exist in a private world in which they have limited ability to successfully communicate and interact with others. Children with ASD may have difficulty developing language skills and understanding what others say to them. They also often have difficulty communicating nonverbally, such as through hand gestures, eye contact, and facial expressions.
The ability of children with ASD to communicate and use language depends on their intellectual and social development. Some children with ASD may not be able to communicate using speech or language, and some may have very limited speaking skills. Others may have rich vocabularies and be able to talk about specific subjects in great detail. Many have problems with the meaning and rhythm of words and sentences. They also may be unable to understand body language and the meanings of different vocal tones. Taken together, these difficulties affect the ability of children with ASD to interact with others, especially people their own age.
Below are some patterns of language use and behaviors that are often found in children with ASD.
What Research Is Being Conducted To Improve Communication In Children With Asd
The federal governments Autism CARES Act of 2014 brought attention to the need to expand research and improve coordination among all of the components of the National Institutes of Health that fund ASD research. These include the National Institute of Mental Health , along with the National Institute on Deafness and Other Communication Disorders , the Eunice Kennedy Shriver National Institute of Child Health and Human Development , the National Institute of Environmental Health Sciences , the National Institute of Neurological Disorders and Stroke , the National Institute of Nursing Research , and the National Center for Complementary and Integrative Health .
Together, five institutes within the NIH support the Autism Centers of Excellence , a program of research centers and networks at universities across the country. Here, scientists study a broad range of topics, from basic science investigations that explore the molecular and genetic components of ASD to translational research studies that test new types of behavioral therapies. Some of these studies involve children with ASD who have limited speech and language skills, and could lead to testing new treatments or therapies. You can visit the NIH Clinical Trials website and enter the search term autism for information about current trials, their locations, and who may participate.
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Things Never To Say To Parents Of A Child With Autism
We know they mean well. Or at least we hope they do. All of the family, friends, co-workers and even strangers who approach parents of children on the autism spectrum with words that really should never have left their mouths in the first place. Words that often unintentionally hurt or upset family members who are affected by autism.
So, in the spirit of National Autism Awareness Month, some of my friends and clients who have children on the autism spectrum decided to brainstorm a list of statements they wish people would and wouldnt say.
1. Dont say: Is your child an artistic or musical genius? What special gifts does your child have?
Weve all seen Rain Man and know about the extraordinary artistic and musical gifts that some individuals on the autism spectrum possess. But the truth is that most on the spectrum do not have these gifts. In fact, only about 10 percent have savant qualities.
Do say: How is your child doing?
This is what youd say to the parent of a typical child, right? Its perfectly acceptable to say this to the parent of a child on the spectrum. They can share with you whats going on in terms of their childs treatment and/or educational experience.
2. Dont say: Youd never know by looking at her that she has autism! She looks so normal.
Do say: Your daughter is adorable
Or offer any other compliment that you would use with any typical child.
3. Dont say: God doesnt give you what you cant handle or Everything happens for the best.
How Is Autism Spectrum Disorder Treated
There is no cure for autism, but treatment can make a big difference. The younger kids are when they start treatment, the better.
Doctors, therapists, and special education teachers can help kids learn to talk, play, and learn. Therapists also help kids learn about making friends, taking turns, and getting along.
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Activate Prior Knowledge And Provide Background Before Reading
Children who struggle with reading comprehension can benefit from pre-reading strategies that help them activate relevant information that relates to the text. Teachers may connect the reading to a childs life or provide background on the central theme in order to indicate gist.
The more direct you are, the better. Sharing personal experiences and stories may also be helpful as is watching film clips or even looking at books on the same topic.