Change in diagnosis – Threat or a possibility

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Backround for the article

As many of us know the international disease classification which Finland is using is changing. With change among other diagnosis Aspergers syndrome is removed from the classification. This course of events can arouse fear and confusion part of which is unjustified but a part fully justified. I strive for in this article explain fow I feel and think about this change and also the good things and what potential problems I see in it. I have written this article as an Aspergers person as an opinion piece based on my subjective feelings and opinions.

The Back round for the change

The ICD is and disease classification system developed by WHO. The ICD classification has many similarities with the DSM classification. The new DSM-V classification has been use since 2013. The ICD-10 has been in use in Finland since 1996 and the new version probly will be adopted in 2017 instead of the orginal goal of 2015.

With this change the autism spectrum will undergo a great change. Previously all forms of autism belonged to classification F84 pervasive developmental disorders, which included Aspergers disorder, Autistic disorder, overactive disorder associated with mental retardation and stereotyped movement, unspecified and Other pervasive developmental disorder and also very rare Heller’s syndrome and Rett syndrome. In the coming ICD classification these divide in to different groups as in DSM V, in which Autism disorder is not considered part of mental retardation or overactive disorder associated with mental retardation and stereotyped movement, Rett disorder or Heller’s disorder. The other disorders will be united under the common diagnosis called Autism spectrum disorder.

What will change­­?

Autism spectre disorder is divided in three subgategories according to the need of support. Roughly speaking people who can cope with out support, people who can cope some support or very little support and people who need constant support and rehabilitation in to three different groups. Because as part of ICD will be the use ICF2, the International Classification of Functioning, Disability and Health which describes persons condition in relation health and surrounding environment. In the future because of the combination of ICD and ICF the determining functionality and limitations will be more accurate than the current method based different diagnosis in the Autism spectrum.

What are benefits and drawbacks?

I feel that one clear benefit is that if things go according to plans, we will have more personal assessment of functionality and limitations. In my understanding until many parents have felt if the diagnosis does have specific information about functionality and limitations it does not have a lot of importance and that the support, rehabilitation and treatment is based on the Autism diagnosis. As a threat and harm some feel in this change all Autistic persons will be treated as stereotypical autistic persons, then people who need strong support and rehabilitation are left without the services they need. Especially in the Aspergers community its felt as great threat that the even now services thought to be insufficient for the needs will be deteriorate in the future with this change.

Definning our selves

How will we define ourselves in the future? How will we describe ourselves briefly? I have myself used the word neurospectrum, because it leaves in my mind quite nicely vague what kind of diagnosis I have, but still giving appropriate sense of scope of differences between the persons in the Autism spectrum. Because many of us have in addition to Aspergers diagnosis other neuropsychiatric diagnosis, as I have ADHD diagnosis and traits of Tourette’s syndrome. I don’t believe that the change in diagnosis will stop the usage of the Aspergers or its derivatives like Aspie or AS person, which can in any case refer as to Austism specturum as it now refers to Aspergers syndrome.

What do I fear, what do I hope?

For the most part I fear division among people in different parts of the spectrum. Thinking rehabilitation and support zero-sum game is not very constructive starting point. I would more like to think that some things may be for the benefit of all people in the spectrum and some in targeted way some parts of the spectrum, but nothing is off from anybody, because there aren’t for the most part opposite interests.

I hope we will see each other more similar than different. I hope the new and more precise diagnosis will also dispel old myths and stereotypes, for example the lack of empathy and being unsocial. This full is speculation and hope, for how things could change for the better if the diagnostics, solidarity and the solutions for autism spectrum persons would improve. I also hope personally that I will be part of opening and developing the conversation on this important subject as there wrong or bad opinions hopefully everybody will voice out their own opinions, if there is better and newer information about the things that are changing.


( Published 23.4. )