Why is a diagnosis important?
Autism is an extremely complex and nuanced condition. It affects social interaction, communication, interests and behavior in both children and adults. In order to ensure correct care and support throughout life, it is essential to be diagnosed as early as possible. Being diagnosed with autism can of course be an extremely daunting time. However, this is the first and most important step to a better life. The diagnosis will be beneficial for everyone involved. It will help the child, as well as the family, feel informed, understood, supported and empowered. Without a correct and early diagnosis, many areas of life can become extremely difficult. Life can seem distressing and bewildering for an undiagnosed person. This can often result in difficult behaviors, social isolation and withdrawal, and difficulty attaining the best result at school.
The tools to help oneself better
Therefore, an early diagnosis is invaluable in helping a child understand themselves better. It helps them to realize they are not alone. It also helps parents to understand what they are dealing with and how they can best help their child. Without a clear diagnosis it is impossible to know where to turn. A diagnosis helps determine the right services and adaptations to put into effect in school, as well as at home. Early, consistent intervention methods make a world of difference for the entire family.
Better access to the positive aspects
There are so many positives about A.S.D. Some of the most successful people in the world have a diagnosis of autism. Often an individual with autism will see things in a way other people may not be able to. Consequently, they will think about problems in a way that offers unique solutions. Children on the spectrum have so much to teach us and so much to achieve in life. It is crucial that we act as early as possible. This enables our children to move forward to become the best person they can.
Describing the problem…
In almost any life situation, having the language to articulate an issue or set of circumstances is hugely valuable. There can be some hesitance about assessing a child for fear of labeling or putting our children in a box. However, you are in fact labeling the interaction problem, not the child.
Diagnosis helps shape solutions
Applying language to a problem can assist both child and parent in articulating the situation. It can empower both parties to know what is happening and how to approach the next steps. In one way or another, every single person has a different neurological makeup and neurodevelopmental behaviors, not just people with autism. Defining the condition can start a dialogue that describes and clarifies the problem and creates expectations which can be realized. After all, knowledge is power!
Early Diagnosis is Crucial
Studies have established how crucial early diagnosis and intervention therapies are for autism. Oswald et al. surveyed 1,420 parents of children on the Autistic Spectrum. Unfortunately, they found that, regardless of early parental concerns, children in the autism group were diagnosed later than children in the developmentally delayed group.
Strategies reduce family stress
Later diagnosis is associated with heightened parental stress. It delays early therapeutic interventions which are critical to positive outcomes for quality of life. Studies show that therapeutic intervention implemented before the age of four (12 months to 48 months) is associated with significant gains in language, cognition and adaptive behaviors. Correspondingly, research has linked the implementation of early intervention with significant improvements in daily living skills and social behaviors. This body of evidence extends far beyond the individual with autism. It shows marked improvement in quality of life for parents, siblings, extended family, caregivers and all involved. Collectively, the research is clear. Early diagnosis and intervention are imperative for long-term quality of life of children and families affected by autism.
What are the diagnostic requirements for Autism?
Diagnostic Criteria of DSM-5 [Diagnostic and Statistical Manuel of Mental Disorders]
This information is according to The American Psychiatric Association.
Note: Individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s disorder, or pervasive developmental disorder (not otherwise specified) should be given the diagnosis of autism spectrum disorder. Individuals with marked deficits in social communication, but whose symptoms do not otherwise meet criteria for autism spectrum disorder, should be evaluated for social (pragmatic) communication disorder.
A. Persistent deficits in social communication and social interaction across multiple contexts.
These can be manifested by the following points, currently or by history:
- Deficits in social-emotional reciprocity. These range, for example, from abnormal social approach and failure of normal back-and-forth conversation to reduced sharing of interests, emotions, or affect. They also include failure to initiate or respond to social interactions.
- Deficits in nonverbal communicative behaviors used for social interaction. These range, for example, from poorly integrated verbal and nonverbal communication to abnormalities in eye contact and body language or deficits in understanding and use of gestures. They can also include a total lack of facial expressions and nonverbal communication.
- Deficits in developing, maintaining, and understanding relationships. These range, for example, from difficulties adjusting behavior to suit various social contexts to difficulties in sharing imaginative play or in making friends. They can include absence of interest in peers.
Specify current severity: Severity is based on social communication impairments and restricted repetitive patterns of behavior.
B. Restricted, repetitive patterns of behavior, interests, or activities.
These can be manifested by at least two of the following points, currently or by history. The examples are illustrative, not complete:
- Stereotyped or repetitive motor movements, use of objects, or speech [e.g., simple motor stereotypes, lining up toys or flipping objects, echolalia, idiosyncratic phrases].
- Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior [e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat same food every day].
- Highly restricted, fixated interests that are abnormal in intensity or focus [e.g, strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interest].
- Hyper- or hypo-activity to sensory input or unusual interests in sensory aspects of the environment. Some examples are apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects or visual fascination with lights or movement.
Specify current severity: Severity is based on social communication impairments and restricted, repetitive patterns of behavior.
C. Symptoms must be present in the early developmental period.
They might not, however, become fully manifest until social demands exceed limited capacities. They might also be masked by learned strategies in later life.
D. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.
E. These disturbances are not better explained by intellectual disability [intellectual developmental disorder] or global developmental delay.
Intellectual disability and autism spectrum disorder frequently co-occur. If making co-morbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.
Diagnostic Criteria of ICD-10 for ‘Childhood Autism’
This information is according to The World Health Organization. It falls under the International classification of diseases: Diagnostic criteria for research [10th edition] Geneva, Switzerland (1992).
A. Abnormal or impaired development is evident before the age of 3 years in at least one of the following areas:
- Receptive or expressive language as used in social communication;
- The development of selective social attachments or of reciprocal social interaction;
- Functional or symbolic play.
B. A total of at least six of the following symptoms must be present.
They must include at least two symptoms from section 1. At least one more symptom must be from section two and at least one more from section three.
1. Qualitative impairment in social interaction is manifest in at least two of the following areas:
- Failure adequately to use eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction;
- Failure to develop (in a manner appropriate to mental age, and despite ample opportunities) peer relationships that involve a mutual sharing of interests, activities and emotions;
- Lack of socio-emotional reciprocity as shown by an impaired or deviant response to other people’s emotions; or lack of modulation of behavior according to social context; or a weak integration of social, emotional, and communicative behaviors;
- Lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (for example a lack of showing, bringing, or pointing out to other people objects that are of interest to the individual).
2. Qualitative abnormalities in communication as manifest in at least one of the following areas:
- Delay in or total lack of, development of spoken language. In autism this is not accompanied by an attempt to compensate through the use of gestures or mime as an alternative mode of communication. A lack of communicative babbling often heralds this deficit;
- Relative failure to initiate or sustain conversational interchange (at whatever level of language skill is present). A lack of reciprocal responsiveness to the communications of the other person can indicate this;
- Stereotyped and repetitive use of language or idiosyncratic use of words or phrases;
- Lack of varied spontaneous make-believe play or (when young) social imitative play.
3. Restricted, repetitive, and stereotyped patterns of behavior, interests, and activities are manifested in at least one of the following:
- An encompassing preoccupation with one or more stereotyped and restricted patterns of interest that are abnormal in content or focus; or one or more interests that are abnormal in their intensity and circumscribed nature though not in their content or focus;
- Apparently compulsive adherence to specific, non-functional routines or rituals;
- Stereotyped and repetitive motor mannerisms that involve either hand or finger flapping or twisting or complex whole body movements;
- Preoccupations with part-objects of non-functional elements of play materials [such as their order, the feel of their surface, or the noise or vibration they generate].
C. The clinical picture doesn’t belong to other varieties of pervasive developmental disorders.
Fighting for Diagnosis
Doctors use ICD-10 and the DSM-5 as the official, clinical resources to pursue an assessment for your child. However, this may be no easy task. Lack of awareness accounts for some of the difficulty. Over-awareness, as professionals make up for historical lapses, carries its own set of problems. The wide variety of symptoms plays a role. We will also elaborate on the differences between boys and girls on the spectrum.
Issues with getting a diagnosis
Medical training and awareness
A recent survey led by Professor Katrina Williams of The University of Melbourne shows that a high percentage of pediatricians are ill-equipped to recognize and diagnose autism. This is due to lack of information on ways to accurately diagnose the condition, as well as lack of training.
First of all, the current training in medical schools and universities is inadequate in educating doctors on the myriad of ways the condition may present. Secondly, there has been an extraordinary rise in the diagnosis of autism in recent years. Studies between the 1960’s and 1980’s show a prevalence of 0.02% to 0.05%, whereas in the 2000’s the rates recorded are 0.5% to 1.14%. This is a statistical jump which has raised questions and controversy about A.S.D. Are doctors simply uncovering cases that would have been missed in the past? Do environmental toxins affect early brain development? Is there a ‘false’ epidemic due to over-diagnosis?
Be aware to avoid pitfalls in the process
All of these political variables only serve to further muddy and complicate the diagnostic process. It’s important to be aware of some of these issues so as to know what difficulties you may be up against and, most importantly, ways to circumnavigate them. The most important thing to remember is that you know your child better than anybody else. Your thorough knowledge of your child makes you the expert, which also means you know best. Knowing the politics and controversies surrounding autism will afford you better decision-making skills when it comes to your child and your family.
Autistic differentials: boys vs girls
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 behavioral findings suggest that girls with autism are closer in social abilities to typically developing boys. Therefore it’s essential we know the gender differences to avoid overlooking or misdiagnosing them. 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 thought that autism was four times more prevalent in boys than in girls. Now that assumption has begun to shift. It simply presents differently in girls.
Why the difference?
There are several possible explanations for the skewed gender ratio. One of the most common is that females learn to compensate for the 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 fly below the radar. Brain analyses of girls with autism show that their activity is lower compared to typical girls in areas associated with socializing. However, the measurements are not much lower relative to neurotypical 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 more information on girls with autism, watch the following talk by Dr. Attwood entitled “Aspergers in Girls”.
For advice on help with seeking a diagnosis, contact us for a consultation.