On Twitter today, someone who is involved in mental health and considers himself an advocate, stated that
First of all, they are not being “removed” and suggesting so is only going to result in the panties of a lot of parents being twisted. They are being integrated into more broad definitions.
The real reason I have my own panties in a twist is that neither of these conditions are mental illnesses. I have no experience of dyslexia, so I will concentrate on the Aspergers (or Autism Spectrum Disorder) side of the debate here.
When I read this, I started looking around the internet to find out if this view was a common perception. And what I found was exhausting. I am used to people “buying the bullshit” so to speak, however I did not realise that the bullshit was quite so rampant.
When we talk about the brain and the mind, we are talking about two different things. Rather than try to explain in words, allow me to embrace my own Aspergers and explain per below:
Mind = psychological = mental illness (e.g. Depression)
Brain = neurological = disorder (e.g. Autism Spectrum Disorder)
Pretty simple really, isn’t it?
There are no biological markers to diagnose ASD, including Aspergers. Unlike other neurological disorders, there is no blood test, or scan, or whatever, to “test” for ASD. A clinician must study the person in front of them and decide for themselves whether or not that person meets the criteria. Diagnosis is subjective.
When ASD was first “discovered” as a condition in its own right, there was no formal diagnostic criteria. After some time, it was added to the Diagnostic and Statistical Manual of Mental Disorders (DSM), because it was thought to be a mental disorder. It was also added to various other diagnostic manuals and a few people came up with their own diagnostic tools. Despite the various ways in which to diagnose, diagnosis was left largely to mental health professionals.
Most of whom had (and still have), no idea what ASD involved, however that is a separate blog topic.
Autism Spectrum Disorder was studied, and we learned more and more about it. We are still learning more and more about it, however while we may not have all the answers, we do know this – it is a neurological disorder, not a mental illness. More and more, children are being diagnosed by paediatricians, and even neurologists, rather than psychiatrists. Indeed, one psychologist once told me that in all of her studies, she did not study ASD.
As for Aspergers being taken out of the DSM V, I have this to say…
For people in Australia:
Whoopdee Doo. Seriously, it is not that big of a deal. Children (and adults) who are diagnosed with Aspergers will fit the new criteria. It is actually a bigger deal for those who are diagnosed with Pervasive Developmental Disorder – Not Otherwise Specified, as some of these children may actually be left out now and not receive the support they need. This is not making the news however, as PDD-NOS isn’t as “sexy” as Aspergers is.
There are other diagnostic tools out there. In Australia, we do not need to use the DSM at all in order to diagnose. It is not needed for funding, or for schools. Professionals are free to use any diagnostic tool they like.
For people in America:
It may be a big deal. I am not sure whether insurance requires diagnosis from the DSM, and in any event, as the DSM is American, many may not realise that there are different tools out there anyway. I get why it may be a big deal over there.
That doesn’t mean that Australian’s need to buy into the hype.
Here is the deal – in America, where the DSM lives, people do not have the luxury of a public health system. Everything over there health related, comes down to insurance. Thus, if your insurance demands a certain diagnosis from a certain tool, then that is the one that you must use in order to receive health care. We do not have that issue in Australia. The DSM is the most popular perhaps, but it is not the only one health professionals use.
The writers of DSM-V have been quite clear that they are making changes to the ASD’s because of insurance concerns. It is not because we suddenly realise that people with Aspergers really don’t have a problem at all (silly us). It is because at the moment, some insurers do not cover Aspergers, or PDD-NOS, and the DSM writers want to make it easier for people to get help. Time will tell whether or not this will work. But rest assured – if your child was eligible for a diagnosis in Australia yesterday, then they will be eligible next year too.
What we cannot do anything about however, is the subjectiveness of “testing”. I know a few professionals who are very good at ticking the boxes, however most professionals that I hear about seem to go by “feel”. “Your child just doesn’t present like someone with Aspergers” is a common comment, and one I have heard myself. In Australia, we need to worry more about educating professionals, than we need to worry about what’s been floating the DSM boat of late. Because honestly – very few are using it anyway by the sounds of things!!!
Quite honestly, I like that the changes are going ahead. I know of some children who have been diagnosed with PDD-NOS, and because it’s considered that these kids are not as “severe”, these children do not receive the help they desperately need.
Think of it this way – If someone is blind AND deaf, then the world is harder than for a person is “only” blind. However, just because the person who is blind isn’t deaf, doesn’t mean that they see better than the person who is blind AND deaf.
Just because a person with PDD-NOS doesn’t tick all the boxes to be diagnosed with Autism, or High Functioning Autism, or Aspergers, doesn’t mean that the issues they do have are not severe. It may just mean that they do not have as many issues.
I really dislike the spectrum analogy, by the way. It is a globe, not a spectrum. But moving on…
Aspergers is not going anywhere. People with Aspergers will simply refuse to allow it. We are who we are. We may not have found our planet yet, but we have found our voice, and we have found each other, and this is the culture we have embraced, whether the writers of the DSM, or insurance companies, or anyone else, likes it or not. This is who we are, and we are proud.
For more general information that I came across while researching for this blog, please read the following: