What is autism?
“What is autism?” I nervously asked Google. For months my wife and I had been trying to figure it out. Why was our two-year-old son’s behavior so markedly different from other children’s? At age two, he was still unable or unwilling to speak.
I sat there at a loss, fed up and on the verge of despair. Worry had gnawed at us through countless doctor visits as the months stretched on with no answers in sight.
My wife had just returned from our son’s speech therapist, who also happened to be a good friend. The therapist had recently started suggesting that our child’s unusual behavior could indicate an autism spectrum disorder.
The topic came up more and more often. “Maybe he is autistic?” Then we began to ask ourselves other questions, and next we stared looking for answers.
The first thing to come up, of course, was the Wikipedia entry for autism. I tried to see if it applied, but it wasn’t very relatable for a parent deeply concerned about his small child. True, some of the symptoms seemed familiar, but it was hard to digest everything. “My son… autistic? Really?!” I thought with disbelief.
Next I was angry and sad, but then I felt the stirrings of something else too. The term did offer an explanation. All the odd experiences could be explained somehow. Finally, the explanations provided some relief, eventually hope…
In this article:
In this post we will answer the questions:
- What is autism?
- Which behaviors indicate symptoms?
- What is the significance of a diagnosis?
- What is autism’s status as a disability, and what rights and services are there?
and offer some reflections on:
- parent perspectives
- child perspectives
- further information and community links
What is autism, exactly?
It is broad and overreaching
A good working definition of autism is hard to find precisely because it is a broad condition. Therefore, it is a spectrum, a constellation.
It affects social functioning
Autism affects communication and social interaction. Autism can show up in that a person clings to some restrictive or repetitive patterns for a sense of security. Also, it will be seen to some degree in a person’s difficulty in dealing with some or many situations which are part of average daily life.
It is lifelong
Autism is present starting in infancy, although it may not become apparent as long as social and environmental demands keep pace with and don’t overwhelm a child’s eventual development of coping strategies.
So in summary…
Autism is a lifelong, manageable neurodevelopmental condition. It is characterized by differences in behavior, communication, socialization, interests and sensory processing. These differences can present in many ways in people on the autism spectrum. In turn, this affect the ways the person might need to interact with people or their environment. For a diagnosis of autism, these symptoms need to be present from childhood and in some way impair the person’s daily functioning.
With many characteristics…
There are many different characteristics of autism. Some are quite typical across the board, yet others may or may not be experienced by a person with autism. Because of this variety, the word spectrum is used to reflect the broad range of ways that people experience autism. On the one hand, for some people on the autistic spectrum there may be an intellectual impairment or disability. On the other hand, many people have average and even above-average levels of intelligence. Thus, each person is unique and experiences autism in a different way. As a result, a diagnosis is incredibly helpful in identifying the problem and finding support systems and therapies that are available! Also, a diagnosis can provide your child the very best early- intervention opportunities and enable them to live a full, rich life right through adulthood.
What are the symptoms?
Symptoms of autism
What symptoms could indicate a possible diagnosis of autism? The post Symptoms of Autism: an Overview contains a list of symptoms which can help you get a feel for what autism constitutes.
Autistic differentials: boys vs girls
Finally, new research is suggesting that autism looks different in girls than it does in boys. Many girls are being misdiagnosed and missing out on the crucial support they need. Preliminary neuroimaging and behavioural findings suggest that girls with autism are closer in social abilities to typically developing boys. For this reason, it’s essential we know the differences to avoid overlooking or misdiagnosing girls. Part of the problem is the fact that much of the criteria for diagnosis in A.S.D. is based on data derived almost entirely from studies of boys. Historically, experts have thought that autism was four times more prevalent in boys than in girls. That assumption has begun to shift. It could be because it simply presents differently in girls.
Why the difference?
There are several possible explanations for the skewed gender ratio, one of the most common being that females learn to compensate for symptoms of A.S.D. much better than males do. Often girls with autism watch social cues and learn to mimic these behaviors. This mimicking of social norms (eye contact, social cues, empathy) means that young girls are too often overlooked. Brain analyses of girls with autism are showing that their activity is reduced relative to typical girls in areas associated with socializing. However, the measurements are not much reduced relative to boys. Consequently, this difference in brain chemistry as well as their ability to mimic, mask and compensate social behaviors can sometimes mean we overlook a possible connection to autism.
Here is the transcript of an interview with autism expert Dr. Tony Attwood conducted by the Autism Women’s Network on the topic of autism in females.
For additional information on girls with autism, watch the following talk by Dr. Attwood entitled “Aspergers in Girls”.
What is the significance of a diagnosis?
An autism diagnosis does not represent a deficit. Many parents are hesitant to seek diagnosis for fear of “labeling” their child. On the contrary, an autism diagnosis can also offer clarity, relief, and a status check which provides orientation and motivation to get support.
Autism is a particular way of perceiving things. Therefore, it causes people on the spectrum to react differently than one might expect. This can be even more the case for children. If these people lack strategies to deal with their particular ways of perception, it can sometimes lead to drastic reactions, which others then register as symptoms.
It is important for parents to realize that help is only offered on a comprehensive social scale after there has been a clear diagnosis. A diagnosis makes many options for early intervention and support possible.
Classifications in diagnosis
It’s important to keep in mind that there is no such thing as typical autistic people. Autism effects people in various ways and to different degrees, which is why it is referred to as a spectrum. With the aid of a medical diagnosis, it can be roughly determined where the child fits on this scale or which type of disorder is prevalent. This helps determine the most appropriate types of therapy and treatment.
The following are three types of autism listed in the ICD-10: Chapter 5 F84. The ICD-10 is the 10th revision of the International Statistical Classification of Diseases and Related Health Problems, a medical classification list by the World Health Organization.
Autistic Disorder or “Classic Autism”
This variety is noticeable in the first three years of life. Parents and siblings quickly notice that the child is different. Specifically, social interaction and communication are strongly impacted. In addition, insistent repetitive behaviors and motion are readily apparent.
Asperger’s generally remains unnoticed much longer. At first these children seem to develop normally . They only gain attention at around the age of three because of their special interests or extraordinarily specific powers of perception.
This is why Asperger’s is usually diagnosed much later. However, Asperger’s children do also exhibit social difficulties. Here too, their special skills are usually restricted to very specific areas of interest.
also known as Pervasive Developmental Disorder, not otherwise specified (PDD-NOS)
This type of autism is less readily identifiable. Sometimes this is because the symptoms are similar to classic autism, but fewer symptoms are present or they are milder. As a consequence, it is often not detectable until after three years of age.
Alternately, the US counterpart to the ICD classification system is called the DSM-5, or Diagnostic and Statistical Manual of Mental Disorders, 5th Edition. The DSM-5 uses the medical term Autistic Spectrum Disorder (ASD) for this whole range of conditions rather than differentiating between specific types. Instead, it indicates the degree of impact to specific areas of competence.
ADOS 2 diagnostic tool
The type of autism or the degree of impact to specific areas of competence are reflected in the diagnosis. The ADOS 2 (Autism Diagnostic Observation Schedule) is the diagnostic tool used to help determine the degree of impact to specific areas.
What causes autism?
There is currently no single known cause of autism, however, recent research has identified strong genetic links. Autism is not caused by a person’s upbringing or their socio-economic circumstances. It is currently estimated that worldwide there are 52 million people on the autism spectrum.
Statistics on the rise in diagnosis of autism
Here is a link to the US Center for Disease Control’s statistics on reporting of autism.
The possible reasons for this rise are complex but are thought to include:
- increased awareness and acceptance
- increased support measures available to diagnosed autistics
- (social) environmental factors which increasingly highlight symptoms
- increased awareness and experience from medical and educational professionals
- the uniting of various autism types into ASD by the DSM-5 classification
The phenomenon is also discussed in a TED-Talk by Dr. Wendy Chung.
Dr. Wendy Chung’s work elaborates the complexity of autism. At the same time, it exposes the gap between what is needed and what is currently on offer when it comes to caring for children on the spectrum.
Autism’s status as a disability
Many parents are justifiably worried about their child being labelled disabled or mentally disabled. Our society’s image of this label evokes pain, rejection, isolation and even poverty rather than the freedom to access resources and develop successfully which we all wish our children to have.
Someone who is disabled is someone who has not (yet) been enabled.
The right to access
The Caritas organization of Vienna said it well. Disability is not a characteristic, but it is a state. In addition, it is beyond the affected person’s control. That is, they are disabled in that they are unable to access something. For instance, in the case of someone with a wheelchair the lack of access is usually obvious, and a justified complaint is easy to understand.
The case of autistic people or, even more so, autistic children is less visible. For example, when they experience difficult conditions in kindergarten, in school or generally in social situations, they often find themselves excluded. Whether intentionally or not, this happens because they and their behavior are not “compatible” with the system or the social circumstances.
When this occurs, it is in clear violation of the United Nations Human Rights Conventions.
However, this is often part of our complex social reality. For this reason, one can refer to autism as a disability.
The legal situation
The ICD 10 is the 10th revision of the International Statistical Classification of Diseases and Related Health Problems, a medical classification list by the World Health Organization. According to ICD 10, autism is medically classified as a mental disorder.
Under the Social Code (Sozialgesetztbuch, or SGB), German law categorizes all functional difficulties arising from mental disorders as mental disabilities. Consequently, services for these disabilities legally fall under the jurisdiction of child services and youth welfare (not social services), and this affects what forms of aid are available (SGB, section VIII, §27 ff and 35a). For instance, aid includes support in the areas of raising children, education and social integration and specifically includes early integration and other therapies, family and education assistants, as well as trained personnel support in school.
Autism rights and services: starting points
The following sites offer legal context for autistic people in individual countries…
- In the USA, the US Autism Association explores legal issues related to autism. It also indicates where to seek help in individual areas.
- A Canadian Charter of Rights for Persons with Autism lists rights and resources for the Toronto region and gives contact points for other regions in Canada.
- The site Living Autism in the United Kingdom outlines available legislation and support for autistic children and adults. In addition it gives some legal framework for the diagnosis process. The Research Autism site further breaks down legal rights for children according to individual countries in the UK. They also provide a guide to health and education services for autistic children in the UK.
- A good place to start for legal help in Germany is Autismus Deutschland.
The uncertainty factor
Many studies report that confusion and stress are also clearly a part of the daily life of parents of children on the spectrum. Caring for anyone with special needs, physical or mental, certainly requires an extra degree of awareness, intention and energy. This drains one’s resources. Likewise, in the case of autism, parents are often confused about the nature of the problems, about what motivates their child and about what to do and how to get help. It follows that these uncertainties are a great source of strain for parents of children on the spectrum, somewhat a counterpart to the uncertainty the children face navigating the neurotypical world.
Studies on parental stress levels
A study from the University of Washington reports higher stress in mothers of autistic children than in mothers of children with developmental disabilities.
The Kennedy Krieger Institute’s Interactive Autism Network (IAN) project lists issues with autism treatments as a major cause of stress.
A study from the Child and Adolescent Services Research Center at Children’s Hospital, San Diego and the University of California, San Diego confirms information on significantly elevated parental stress levels, citing some reasons such as coping with a child’s uneven intellectual profile, pervasive disruptive behavior and long-term care demands. Exploratory research was also done about the positive effects of early intervention and integration on both autistic children and their neurotypical peers as well.
Self-care: no family member left behind!
Autism in the family affects the whole family, not just the affected individual. We’re no good to anyone if we’re not taking care of ourselves first. Self-care is crucial after a diagnosis, recognizing that we need to make space for ourselves so that we are better able to care for our families. There are lots of ways to approach self-care. Some seek psychotherapy, others might join a gym or sporting group and ensure they eat wholesome foods. For some it’s playing music or going for long walks. For you it might be talking to a trusted friend or family member or joining a support group. Whatever self-care looks like to you, try to make it a top priority. After all, if we’re not feeling well, we won’t be able to take care of anybody else!
Atypical.life provides one-on-one consultations for people who would like a bit of support and guidance. It would be our pleasure to listen to you.
The parent journey
As a parent, it is important to draw on your own knowledge of your child and situation.
Initially, you think that everything can be clarified medically. After all, there are systems of classification like ICD-10 and diagnostic tools. Unfortunately, in reality many pediatricians are not familiar enough with the nuances and challenges of autism. In the end, parent concerns are still all too often brushed aside.
In our case, our son hadn’t yet spoken at the age of two. When we voiced our concerns to the pediatrician, his first suggestion was that we deny our child food and drink until he verbally expressed his hunger and thirst.
Fortunately, we didn’t follow the advice of this doctor but sought to understand what was behind the behavior. This example is not an attempt to make medical professionals look bad. It just illustrates the reality that parents often look for answers from perceived experts who neither know the children nor the intricacies of autism.
Parents frequently better understand their child intuitively. Consequently, if they have doubts, we want to encourage them to get a second or third opinion until they feel confident that a solution is working for their child.
Books by parents
Cornelia Pelzer Elwood, a mother who saw the educational environment of her child wasn’t meeting his needs, describes her reaction: Take Charge of Treatment for Your Child with Asperger’s (ASD): Create a Personalized Guide to Success for Home, School, and the Community.
A father, Jason Hague, writes about his journey of communication with his largely non-verbal autistic son in Aching Joy: Following God Through the Land of Unanswered Prayer.
We are interested in hearing about your journey. Please leave us a comment with what was a defining moment for you.
Ultimately, the autistic perspective is perhaps one of the most helpful tools in navigating a hybrid life. Fortunately, there are many blogs that offer autistic perspectives on any number of issues and topics.
Individual autistic bloggers:
The blog link of an autistic teen.
The blog link of an autistic boy who communicates by typing and a list of other blogs like his.
An autistic woman writes her perspective on housekeeping in “A Healthy Mind in a Tidy House“.
Dr. Stephen Shore emphasizes the significance of music and art for autistic people.
One autistic man describes friendship from his perspective. He relates how, at fifteen, loneliness pushed him to analyze successful social interaction. As he became more adept at interaction, however, he felt it was “more like completing dull homework than forming genuine relationships”. In another post he relates a film experience comparable to attempts at social comprehension. The film is characterized by “the indelible ebb and flow of perception”.
Some blogs of the autistic community:
Do you have any favorite sites on autism? Please leave a comment!