What happens in May 2013? If I said DSM5 is published, does that mean anything? DSM5 is a manual that diagnosticians and clinicians base their diagnosis on. The American Psychiatrists Association publish DSM. Currently we are using DSM4.

DSM4 is a manual of the diagnostic criteria for Classic Autism, Aspergers Syndrome, AD/HD, ODD …. and other Mental Disorders. Now I know what you may probably be thinking, Autism is NOT a Mental Disorder but a neurological one and why is it even included in this manual?  I would agree  with you all, but today that is not the argument, for now we have to accept that this is the system we use rightly or wrongly.

The USA and UK use DSM4 in the main although Europe tend to use a similar manual called ICD10.

In 1993 Aspergers Syndrome was added to the manual and this gave way to many more people accessing this as a diagnosis, I believe that no-one anticipated the level of demand  and it has taken many by surprise.  Consequently figures for Aspergers Syndrome and PDDnos are at the highest they have ever been.

Now for the sting in the tail…. DSM5 proposes to remove both of these diagnosis to replace it with ‘Autism Spectrum Disorder’ meaning the subtypes just disappear, vanish into thin air. In the future you or your loved one could be ‘classified as mild autism’! And what does that say? I would argue that it actually tells us NOTHING.

So why do this?  Why? Sadly it is all about cost. How can we sustain the high level of service provision in these dark economic days? We can’t. Scarily those are not my words but those of the Chair of DSM5 Dr David Kupfer. Am I joking? No. To see it yourself please click this link

What do the autism experts say? Those names we have all come to admire and respect have had no input, they are not generally consulted …  nasty whiff of fait au compli. Many have come out and aired their concerns and worries, as yet I have found only one who supports this change, the rest are vehemently against it.

So what about your son, daughter, nephew, uncle, sister……? Those who have already service provision put into place and are doing well with personalised support? Do they just vanish and once again become ignored and invisible? The reality is that yes they may. And all because of cost.  But  you can’t medicate Aspergers Syndrome, poor sad drug companies must be missing out. I can see them crying over their cauldrons of concoctions.

So I hear you cry, I am keeping my Dx and noone is taking it away ever! Sadly I wish that was true, today everyone is constantly being re evaluated, whether it is for Benefit entitlement, Individual Education Plans, Statements of Special Ed Needs or simply medical treatment. If criteria is to be ‘stricter’ services may just get cut.

AD/HD criteria will also change, working in the opposite way, it is anticipated that because of DSM5 the numbers seeking Diagnosis for AD/HD will rapidly increase. Are we ready for that? Does anyone know to expect a demand? Are there behavioural teams on standby? AD/HD does not qualify for Social Communication Teams, it will be the Behaviouralists who are going to be soon out of their depth. And without being too cynical, let’s remember you can medicate AD/HD, scarily.

As well as all of the above changes, there will be additions to DSM5 that alarm me hugely. One in particular Temperate Dysregualtion Disorder?? Guess that can be medicated too, job done. And of course a behavouralist maybe consulted otherwise it is my gut feeling the blame will come back to mums.

It is Professor Temple Grandin’s fear that there will be a whole generation of toddlers running around on heavy duty medication during a time when their brains should be growing naturally and without the input of chemicals. I agree.

Is there any good news to look forward to in DSM5? Sensory conditions MAY …MAY be included but at the time of writing, nothing is set in stone.

So what now? Is there anything WE can do? Yes there is, please inform everyone of these changes. They will creep up on us and before we know it’s job done. Do we have reason to be worried? Yes I believe we do but panicking about it and scaremongering everyone won’t help. How will this affect our Autism Act and the subsequent Autism Strategy, we are after all protected by legislation. The effects of one USA publication could in theory have potentially massive impact on the Autistic community here in the UK.

There is a ton of information out there so please go and look, check out the facts and make your own minds up. For me the Jury came back long time ago and my recommendation would be that DSM5 is halted and delayed. There are far too many issues not yet resolved, too many loose ends with not enough evidence to back the decisions up. It would be far better in my opinion to base services on NEED and not diagnosis.

Many are still in blissful ignorance of DSM5 and the effect it could have on the Autism community. Pass the word around, educate yourself and campaign for DSM5 to be halted until it can be produced safely. The consequences/repercussions currently in my opinion far outweight anything that will go to help the autistic community, but will potentially harm them for generations to come. Once it has been published there is no going back.

Let’s get the community pulling together, armed with the facts and all call for the HALT to DSM5 NOW. No good hoping it is going away, it is all but here on our doorsteps. Don’t panic, ACT NOW.

Categories: Debi

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