Redefining Autism: The Need for Accurate Diagnoses

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Let’s take a closer look at Autism Spectrum Disorder (ASD) and its impact on individuals’ lives, including how inaccurate diagnoses can have serious consequences such as discrimination and depression. We’ll also explore the possibilities of reassessment and correction of diagnoses.

Autism Spectrum Disorder (ASD) is a multifaceted neurological diagnosis affecting social interaction and communication skills, often accompanied by repetitive behaviors or interests. With an estimated prevalence between 0.7% and 2.6% in children, ASD has profound consequences for individuals, their families, society, schools, and the healthcare system. Accurate diagnoses are crucial for providing appropriate interventions and support, but incorrect diagnoses can lead to serious consequences such as discrimination, psychological stress, and a lack of adequate care. In this article, I reflect on the extensive consequences of inaccurate ASD diagnoses and examine the possibilities of reassessment and correction to enhance the quality of life for those affected.

Are you getting diagnosed?

The prevalence of autism diagnoses has increased over the last 25 years. Studies from various parts of the world have shown a dramatic rise in autism prevalence during this period. For example, Stockholm in 2016 had a prevalence of 3.1 percent among children. This significant increase compared to previous decades has sparked interest and concern among researchers and society at large.

The cause of the increased prevalence of autism diagnoses is complex and influenced by several factors. Changes in diagnostic criteria for autism, as seen in diagnostic systems like the Diagnostic and Statistical Manual of Mental Disorders (DSM) and the International Classification of Diseases (ICD), have broadened the definition of autism. This expansion has resulted in including more individuals under the umbrella of the diagnosis.

It’s essential to note that increased prevalence doesn’t necessarily mean an actual rise in autism symptoms. Research indicates that children aged 7-12 diagnosed with autism exhibit half as many autism symptoms today compared to a decade ago. This suggests that many individuals receiving autism diagnoses today might not have received a diagnosis earlier, or they might have received different diagnoses or none at all.

Another factor contributing to the increased prevalence of autism diagnoses is heightened awareness and knowledge of autism among healthcare professionals, schools, and the general public. Increased awareness of symptoms and better education for healthcare professionals may lead to more accurate diagnoses and identification of individuals with autism.

Diagnose on the rise.

There is a notion that it has become trendy to have a diagnosis, not only for Autism but also for other common diagnoses such as ADHD, bipolar disorder, and similar conditions. However, is the increase genuinely due to expanded knowledge, or has society changed? I believe it’s the latter, that societal demands on individuals have increased, causing those with an “invisible” diagnosis to suddenly stand out and attract attention. Additionally, there is a greater willingness to pinpoint and change the individual rather than working to change the individual’s environment so they can live on their terms.

An ASD diagnosis can lead to discrimination and stigmatization of the individual. People with ASD may encounter biases and preconceived notions about their abilities and potential, resulting in social isolation and limited educational and employment opportunities. Moreover, an incorrect diagnosis can lead to improper treatment and support, worsening symptoms and diminishing the overall quality of life for the affected individual.

If someone has Cancer, a physical defect can be identified, and a fairly accurate diagnosis can be made. However, with a neurological deviation, it becomes more challenging. A child struggling in school may have a diagnosis, but it could also be attributed to various factors such as home environment, peers, lack of peers, bullying, harassment, teachers, and the list goes on. In today’s society, there is a trend to believe that a child with problems has a diagnosis, so that’s often where one looks first—searching for the problem within the individual rather than exploring issues in the environment.

To reduce the risk of inaccurate diagnoses and improve the lives of those affected, increased awareness of ASD is necessary, along with better education for healthcare professionals and society at large. It’s also crucial to use standardized and reliable diagnostic tools to ensure accuracy in diagnoses. Perhaps the focus should be on identifying environmental issues first and individual issues second. For those already diagnosed with ASD, there should be opportunities for reassessment and correction if there are suspicions of inaccuracies. By doing this, we can help provide the care and support these individuals truly need and enhance their quality of life and well-being.

I also believe there is a need to find a way to hold accountable the authority or institution that contributed to an inaccurate diagnosis. Perhaps the school that incorrectly insisted on an ADHD diagnosis should help rectify the individual’s life they affected. This could increase awareness of the importance of considering the environment and surroundings.

Growing up in the ’80s, I wasn’t diagnosed, and I think it’s because the environment and surroundings were more forgiving. My problems and concerns existed back then, but they were addressed differently than they might be today. The environment was adapted for each individual in a better way, and most importantly, there were more resources in schools than there are today (something I believe is a consequence of shifting responsibility for schools from the state to municipalities).

Getting the wrong diagnose can have profound affects

If one receives an incorrect diagnosis, it profoundly affects the individual. Besides the physical and social implications, an incorrect ASD diagnosis can also have severe psychological consequences. Individuals mistakenly diagnosed with ASD may experience feelings of confusion, anxiety, and depression. They may also struggle with their identity and self-esteem when they don’t recognize themselves in the assigned diagnosis. Working with a self-image that doesn’t quite match and facing discrimination in society can make matters more challenging. If the diagnosis is also incorrect and involves medication with narcotics, it likely creates more problems for the individual than the absence of a diagnosis would.

Simple things like obtaining a driver’s license, completing military service, applying for various education programs, and many other tasks become problematic with a diagnosis. Instead of assessing each individual’s abilities, it is assumed that everyone with ADHD or ASD cannot drive a car, train, or airplane. Even though there is evidence that people receive their diagnosis later in life and have been driving a bus or train perfectly for 25 years, they simply didn’t know they couldn’t do it based on their diagnosis.

Reassessing and correcting a diagnosis is a crucial process to ensure the patient receives the right care and treatment. Diagnoses can be complex, and diagnostic errors can occur due to various factors. Here are some steps that can be used to reassess and correct a diagnosis:

  1. Gather complete and accurate information: To reassess a diagnosis, it’s crucial to collect all relevant information about the patient, including medical history, previous tests and examinations, symptoms, and any previous diagnoses. Involving multiple healthcare providers and specialists may be important to get a comprehensive view of the patient’s health.
  2. Symptom assessment: Evaluate the patient’s current symptoms and compare them to the criteria used for the diagnosis. This may require a thorough physical examination and possibly additional tests or laboratory work to rule out or confirm different diagnoses.
  3. Consult other experts: Reassessing a diagnosis can benefit from consulting other healthcare providers and specialists in the relevant medical discipline. Other experts can contribute their perspectives and assessments based on their experiences and knowledge.
  4. Follow-up on the patient’s condition: In cases of doubt about the diagnosis, it may be helpful to follow up on the patient’s condition over time to observe any development or changes in symptoms. This can contribute to gaining a clearer picture of the patient’s health status and whether the diagnosis needs adjustment.
  5. Correction of the diagnosis: If new or sufficient evidence emerges indicating that the original diagnosis was incorrect, healthcare providers should consider correcting the diagnosis. This may involve adjusting the treatment plan and taking measures to meet the patient’s needs based on the revised diagnosis.
  6. Communication with the patient: Precise communication with the patient throughout the process is crucial. Explain the new findings and discuss any changes in the treatment plan. Patient involvement and understanding are essential for achieving good care and treatment outcomes.

Reassessing and correcting a diagnosis is a necessary part of the healthcare process to ensure that the patient receives the most appropriate care and treatment. It requires precision, collaboration among healthcare providers, and communication with the patient to achieve the best possible results. It’s not certain that one will be rid of their diagnosis even if they try; they may be so influenced by previously incorrectly diagnosed conditions that they’ve developed a different personality and suddenly fit into the criteria. They may also find themselves with a different disorder than they believed they had.

As you may notice, it’s not a straightforward path when one receives a diagnosis; individuals are often left alone with their thoughts, and the support they receive after getting a diagnosis is often far from as good as one could wish. The fact that individuals are suddenly discriminated against in society for being different doesn’t make things easier. If the diagnosis is also incorrect and perhaps involves medication with narcotics, it likely creates more problems for the individual than the absence of a diagnosis would. If you want to know more, there are several links below. Please feel free to leave a comment if you’ve had an incorrect diagnosis or if you’ve experienced discrimination in society.



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