Spectrum Disabilities
What is a spectrum disability?
A spectrum disability is a disability with various levels of severity or positions on a spectrum. This is a super broad term but is useful for understanding lots of different types of disability and issues with advocating for them.
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Many chronic illnesses are spectrum disabilities (regardless of whether they contain spectrum in their name). Some people with chronic illness may have a completely invisible disability and work full time. Others are maybe completely dependent on 24/7 care. But all would identify as chronically ill. A range of people exists in between these extreme examples. It is a spectrum disability because an infinite spectrum of levels of disability exists within this label.
Here are a couple of specific examples:
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Autism Spectrum Disorder is a spectrum disability. There is a multitude of autistic traits and people can exist with any combination of them all. For example, one person's autism might feature stimming and speech difficulty as its most prominent features while others might feature social anxiety and executive dysfunctioning. This means even though one person might definitely be more autistic than another by having more of every single trait, most autistic people will be unique points that aren't directly comparable. But it is still a spectrum because it affects different people differently with infinitely many levels and types of disability along the spectrum.
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MECFS is a spectrum disability. It often has levels defined as mild, moderate, severe, very severe, and extremely severe. However, individuals exist all throughout that range. There may be patients who are mild-moderate or severe-very severe. Once again it is a spectrum disability because it can be seen as an overlying condition that describes infinitely many levels of disability inside of it.
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What are the pros of spectrums in medicine?
-Reduce time to diagnosis by being able to diagnose and treat mild cases earlier
-Groups patients by underlying issue rather than how their disability presents, potentially improving studies and treatment
-Avoids unnecessary diagnostic criteria to separate discrete levels in illnesses where progression is continuous
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What are the cons of spectrums in medicine?
-Can lead to underdiagnosis of mild patients or dismissal / unmet needs of severe patients if doctors don't understand the range of the spectrum
-Can leave severe cases without a diagnosis that confirms their severity
-Can lead to misconceptions about what all people with a given diagnosis look like when spectrums encapsulate such a large variety of abilities
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Things to remember:
-Learn about the whole spectrum of a diagnosis or disability before you judge whether it is a serious condition
-If you only know one person with a spectrum disability, you know one person. Do not use their case to place functional expectations on others with the same diagnosis.
-Doctors should not be afraid to specify the severity of a spectrum disability on diagnostic reports
-The mild cases of a spectrum disability often serve as activists for the whole community due to being more able. These people should seek to raise awareness for the severe end of the spectrums.
-The severe cases of a disability should remember that while mild cases may not relate to what they are going through at all times they are still suffering from the same underlying condition and are thus our strongest allies in fighting for our rights.
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While my myalgic encephalomyelitis, MECFS and autism ASD are very different conditions they both share the trait of existing on a spectrum. Having low needs autism and severe ME allows me two different perspectives on spectrum disabilities and sheds light on why acknowledging spectrums is so important.
For those on the mild side of a spectrum, they may struggle with not feeling "autistic enough" or "sick enough". While it is important that mild cases acknowledge and highlight the struggles of people with more severe versions of a condition it is also important that they feel comfortable with their diagnosis. In fact, the biggest strength of spectrum diagnoses are their ability to bring together people of various severities and unite them to better understand and treat a condition.
It can also reduce the time to diagnosis for progressive conditions. For example, there is an initiative to create Behcets Spectrum Disorder which would include recurrent aphthous ulcers PFAPA Behcets Disease and Neurobehcets Disease. This could help people who fall between categories like having Behcet's disease with lots of neurological complications as I have. Or people with lots of autoinflammatory symptoms and recurrent mouth ulcers who don't quite qualify for a Behcets diagnosis but could benefit from treatments like colchicine.
On the other end of the scale, people with severe versions of a disorder can sometimes suffer from not having severe cases recognized. For example, severe ME is often dismissed because doctors don't know ME as a life-threatening condition despite the fact that it can be in severe cases. But severe patients can also benefit from being part of a spectrum as it increases the pool of activists and often stops them from having what would otherwise be a rare disease with all the complications that entails.
In summary, there are pros and cons to spectrums but the most important thing is the awareness that spectrums exist and that a given disease is a spectrum. Not every spectrum disease has a spectrum in the name (like MECFS) so it is important to remember to learn about disease in general and not just one case when you form your opinion of it.
