Polly Tommey of Autism File Speaks to the Autism/Asperger's DSM V Question
The following is excerpted from Autism File Magazine with permission. A .pdf link to the original article follows at the end of the post.
By Polly Tommey
I think we have a problem; maybe people with Asperger’s and autism should not be underthe same umbrella. It seems to me that we are dealing with two completely different conditions.
We know all about the similarities, but it’s the differences that concern me at the moment, and it’s the differences that are so apparent in the calls that I receive every week.
I get calls from people with Asperger’s who say they need help with things like getting into
mainstream school, getting into college, getting a job and keeping it, finding somewhere to live within commuting distance of their own community, making friends, getting a girlfriend,
getting a diagnosis. Many are proud of what makes them special and proud to be a part of the Asperger’s community, but they want the wider community to accept them for who they are and to help them find their place.
Parents and caregivers dealing with autism tell me what they need: a school or place that
meets their child’s needs without having to take the school district to court every step of the way; a curriculum that recognizes the overriding
importance of independence and social skills; more access to specialized speech and language therapy; more access to educational and
therapeutic approaches that can help reduce anxiety, improve behavior and enhance life skills; and medical and nutritional needs to be taken seriously as a matter of urgency. Perhaps most importantly, they need the support of doctors
who can recognize and treat the various medical issues that plague so many of our children. They need someone to help them get fit and ready for learning, and, of course, they need an answer to the burning question that many are afraid to ask: what will happen to our children when they become adults?
Read the full article HERE.
Being, experience, and consciousness are becoming excessively (and increasingly) dream-like, unconscious, and inanimate.
There is an ongoing disintegration, contraction, and detachment of being, experience, and consciousness that is consistent with depression, autism SPECTRUM disorders, OBESITY, anxiety, etc.
Posted by: Frank Martin DiMeglio | March 22, 2010 at 03:55 PM
The fact that autism is a disintegration, contraction, and detachment of being, experience, and consciousness is consistent with toxicity/damage/disorder.
The NUMEROUS vaccines are biologically active, and yet they are unnatural and foreign to the body. So when the body THEN reacts as if it is infected with disease (via antibodies/immune responses), is it not diseased/ill/damaged/infected to some extent? All of these NUMEROUS and altered/unnatural immune responses/vaccinations will eventually compromise our immune function.
Autism also involves a disintegration, contraction, and detachment of memory, feeling, thought, and emotion. Importantly, autism is understood as involving biological toxicity/disorder/damage in relation to thought, feeling, and emotion.
Posted by: Frank Martin DiMeglio | March 06, 2010 at 03:18 PM
Lorene, about not being able to show you the difference between HFA and AS. Here is what I have noted. The major difference.
I am one of the few who believes that HFA and Asperger’s are not the same thing. And yes, for more than just the early language delay thing.
With Asperger’s, we actually do want to be a part of the rest of society. We want to be able to understand how to be social, how to have ordinary conversations to make friends. We want to be a part of the rest of the world, we just don’t know how.
We look for a bridge between our own world and the world everyone else is in, somewhere we can reach out to your world, and you can reach out to ours.
For those with HFA, those whom I have gotten to know, and I am not wanting to offend anyone it is different. They are very content in thier own world. Whereas they will talk to and socialize with others as much as needed to get along in life, they don’t feel this need to fit in or be a part of society the way someone with AS would. As stated before, they are content in thier world. They like friends, but society as a whole doesn’t hold a lot of meaning for them.
Addressing the rest of the issue now. What they are doing is a mistake for many reasons! I understand that parents are wanting services for those with Asperger’s. And this is desperately needed, as I have AS I know this! But we need services that make sense to deal with the issues that we on the other side of the spectrum face! I already have to go through therapies and tests that I don’t need, waisitng tons of state money, because issues that are apart of other kinds of autism. I don’t have these issues. No one that I know with AS does.
But we are put through the tests and therapies anyway.
Meanwhile, in the areas we actually DO need help, there is absolutely nothing!! I see no programs helping the college bound HFA/AS with transitioning from highschool into college.
I see no programs to help us find, apply for, learn interview skills for, and keep jobs. As well as communicating with your boss, and your fellow employees.
I see no programs that teach us how to budget, how to balance a check book, how to clean, how to cook, how to spend wisely. No programs on how to deal with and live in society and deal with people in a way that would make it easier to live independently on our own.
I see no help with housing, on helping us learn how to be a part of the community, on helping us cope with anxiety, or helping us understnad what is expected of us by society and why. No, all these services don’t exist. And continue to not even be discussed unless someone like me comes along who forces the issue!
They already treat almost all of us the same, giving us all the same therapies, same lessons, same benefits, etc. No matter how drasticly different we and our needs are from one another.It’s a waiste of time, money, resources, and continues to allow millions of people to fall through the cracks of our system, with still no help.
This will only make it worse. For along with lumping AS under Autism, they are changing the criteria to better fit it under that area. Which means more will fall through the cracks, even though they have genuine issues that need to be addressed!
I know, parents want to be able to get benefits for thier children. I understand that, I know there is a need. But why is the focus only on getting benefits to politicans? Why are there not programs out there to help and teach us how to transition and help us throughout college or employment so that we can get meaningful jobs and not NEED goverment benefits?
Why is it so hard to understand the idea of paying a little now for these services to save alot later when we are able to get along without goverment benefits?
We have got to stop this cookie cutter one size fits all approach to treating a Spectrum of disorders! Especially one as large with such drastic differences as the Autism Spectrum! We have got to start indivudualizing care based off the needs and the goals of each individual on the Spectrum.
It makes absolutely no logical sense to lump us in with those who's needs are so drasticly different from ours!
That is why the system is failing so miserably now, and will continue to fail. Because they don’t get it! THey are doing nothing but going in circles instead of addressing the issues at hand. The “at least we are doing something” mentality is total bs. Because if your something is the wrong thing, nothing will ever change.
This will just make all the special educators, the teachers, staff, case managers, doctors, and therapists to treat us all the same, with the same therapies, treatments, etc even though we do not have the same issues.
No one wants to help with the problems we do have. Everyone wants to treat us for the problems we don’t have.
Maybe it’s just me.
Posted by: Darian (nickname) | February 17, 2010 at 12:39 PM
Bob;
How do you know your four year old son when he reaches the age of my son will not then be aspergers??
Posted by: Benedetta | February 17, 2010 at 09:03 AM
Great article. I agree that the Aspies are well-intended, but they are inadvertently hijacking the agenda.
Yes, there is a lot of overlap. But, as the author points out, there are SIGNIFICANT differences. Different needs, different goals.
Better to have an Autism group and a separate Asperger's group. They can work together on the things where there is overlap, and work separately where their needs diverge. It's common sense. In fact, we could use those occasions where the groups "come together" to create media interest. And the fact that there would be 2 different organizations would almost FORCE the media to explore the differences in a way that would educate the public and the politicians.
I think it is a wonderful idea to have 2 different groups for Autism & Asperger's.
Bob
(father of 4 y.o. with idiopathic regressive autism, definitely not Asperger's)
Posted by: Bob | February 15, 2010 at 03:25 PM
ugh. More to upset our community.
Posted by: Kathleen Murphy | February 15, 2010 at 09:41 AM
My son had Asperger's/HFA. He has been recovered for 2 1/2 years. I don't believe Autism is a psychiatric diagnosis at all, but a treatable medical condition. As I treated his medical condition with biomedical interventions (exclusively) his need for special accommodations diminished drastically. He was learning all along even though his performance might not have seemed to show it. Healing him allowed him to go from never having written a paper independently through high school to writing totally on his own in his college freshman year. Papers were always dictated with lots of parental guidance.
Some people get upset over "labels", "Do you label a child or not?" Some get upset over which label, "HFA or Asperger's?", "Autism or PDD-NOS?" Others argue over "Don't fix me, accept me as I am" rather than "It's a medical problem that is treatable". Bottom line is that everyone has to make the best decision for their child under their individual circumstances and do right by their own child. This "shell game" of labels isn't the problem, the problem is the problem, and we need to do whatever we can to heal these children no matter what you call it.
Posted by: Lila White | February 15, 2010 at 07:07 AM
Thanks Polly, your piece summarises well the issues we are dealing with every day when meeting people on the Spectrum- Indeed autistic and Asperger people are very different, leading to very different needs and required solutions. One should stress however, as expressed here in the comment section by Jan Johnston-Tyler that the life of people with Asperger is not necessarily easy, depression, unemployment, isolation etc. The fact that individuals with Asperger, who undoubtedly have many more skills than autistic persons remain very much vulnerable, indicates that what is missing is a supportive system, missing on services, and an open-minded community. These lacks are also affecting people with autism, even these people need more still. The answers to the problems must come from a more accurate definition of the (currently defined) ASD people and conditions, in first instance and then a translation into provisions and services. Removing Asperger risks to blur the definition of autism further. I take a quote from Catherine Lord that is very much at the forefront in diagnosing ASD, to illustrate how blurry the definition of Asperger can be
"Nobody has been able to show consistent differences between what clinicians diagnose as Asperger's syndrome and what they diagnose as mild autistic disorder," said Catherine Lord, director of the Autism and Communication Disorders Centers at the University of Michigan, one of 13 members of a group evaluating autism and other neurodevelopmental disorders for the manual.
"Asperger's means a lot of different things to different people," Dr. Lord said. "It's confusing and not terribly useful."
Is the confusion C Lord refers to relating to the fact that many with Asperger people are self-diagnosed and possibly not truly Asperger? Or diagnosed following ADI-R (Autism Diagnostic Interview-Revised), that showed they had traits early on in their life, even though as adults they may have learned to compensate and overall are functioning? Should the answer be in any case more diagnosis, more evaluations, for everyone, rather than less?
The plans of the American Psychiatry Association seems to be heading in the right way as far as defining the rest of the spectrum further, reporting on severity and comorbid health issues such as GI problem (see link end of the comment). But why would they want to remove Asperger and possibly PDD-NOS as if these did not constitute recognisable conditions? That does not seem to fit with their aims to define the severity better, it seems to be contradictory.
In my opinion, ASD (as currently defined) should be looked at in terms of sub-phenotypes, health issues must be considered too, not solely the triad of impairment. Severity must be graded. The fact that individuals can move on the spectrum, up or down, must also be recognised. This can only come with more evaluations, more recognition and this realisation stands a lot more chance to lead to better provision, which is really our big aims - better provisions.
http://psychiatry.org/MainMenu/Research/DSMIV/DSMV/DSMRevisionActivities/DSMVWorkGroupReports/NeurodevelopmentalDisordersWorkGroupReport.aspx
Posted by: Lorene Amet | February 15, 2010 at 03:33 AM
Re Post by Gatogorra: "Though I agree with what I've read so far, that needs are different, since we're fighting to get autism recognized as a medical condition and not a psychiatric condition, I believe Asperger's and autism should be categorized by cause. If the cause of Asperger's is basically the same as severe autism, then it's simply the lighter end of the same "spectrum of poisoning".
AMEN. All categories on the autism spectrum are caused by the same thing, POISONING, and the single greatest cause of that poisoning is VACCINES. Some children are fortunate to have less toxic damage than others, but all of these children need to be recognized as medical conditions that can be treated, not as "psychiatric" conditions that require drugs.
Posted by: Autism Grandma | February 15, 2010 at 01:15 AM
I have a Diagnosed Asperger's and a Diagnosed Autistic (moderate functioning). I see more similarities than differences. The biggest functional difference I observe is that despite the tremendous good fortune of incredible resources, programs and therapies, my Autistic child will never fully mainstream. My Asperger's child who has also received incredible therapy is able to mainstream. Although my Asperger's child will always be literal, rigid, logical and quirky to others, he is now mainstreamed and looking forward to college.
It seems to me that both types need a tremendous amount of daily therapy, the expectations for each of them is related to the severity of the symptoms.
I am concerned that removing Asperger's from the Autism spectrum would eliminate the services that were critical to my Asperger diagnosed child's success in mainstreaming. What will happen to these kids?
Posted by: shari | February 14, 2010 at 08:16 PM
This piece is so well written and I find myself agreeing with all of it. I don't believe any autism should be in the DSM, but since it's going to be anyway--I firmly believe, as is stated here, that aspergers should not be under the same umbrella. Thank you.
Maurine
Posted by: Maurine Meleck | February 14, 2010 at 06:17 PM
I can tell you there is nothing for aspergers right now. It is like we are back in the school system and I had to threaten, sweet talk, and actually work right in the class room ---- Except now it is with the state trying to get them to do something in vocational rehabilatation. So far we meet in her office about once a year and she suggest to him that he should go to the community college and see if they have some type of co-op program.
After emailing, and calling she said that we could go over to another town and get some test done, like aplitude testing.
The woman called to set up the appointment for the aplitude test (this is such a hard test - always do it in high school and it takes all of 30 minutes when they do) But she says it will take a week. So we will be going 45 minutes away to test all week.
I tell her that two days my son does go to class. She says we can work around that. That is great I tell her, and then she goes off in another direction saying that she needs to call the vocational rehabiltation office and see what they actually want.
She says then she will call back and then she will make the apppointment with us and then it has been a month and I have not heard a word.
Yeap! Just like school except I was a school teacher and could sit on them - I however am not a state worker and looks like I am going to have to learn a whole new set of rules.
THis is never going to end -- is it???
I did not think so.
Posted by: Benedetta | February 14, 2010 at 06:11 PM
Hi all --
I work with autistic individuls every day, mostly higher functioning adolescents and adults who are or have been in special education in public schools.
While I'm very concerned about the new DSM V, and have begun submitting lengthy comments to the board, I do believe that ALL autism is indeed a spectrum from 'severe' to 'mild' -- this is what we see clinically -- people who will not be able to live independently without at least some scaffolding and others who will be able to live a mainstreamed life.
The reason why I think it is useful to continue to think of it as a spectrum is because there are pervasive themes (issues and strengths) than run through this population, and if we can develop treatments which allow us to finetune for the particular individual, I think we can make more inroads.
For example, teaching executive functioning skills to someone who is severely autistic and to someone who has severe Asperger's is a similar task, and can use some of the same program dollars and resources. If we divorce the two and have two completely different programs, less people overall get served.
I do believe that Autism MUST be in the DSM, for two reasons -- one, to procure services (without a diagnosis, no one will get services, and without a diagnosis with great detail, the services will not match the specific individul), and two, to help bring attention to the specific needs this group of people has.
I TOTALLY agree that the current DSM IV is quite wrong, and I'm concerned that rev V may not go far enough in detailing the specific challenges, such as sensory, executive functioning, emotional regulation, attention/activation, rigidity, etc. So, folks like me have to write very detailed reports, and pull on many different specialities (OT, PT, rehab, education, housing, vocationl, etc) to develop a reasonable plan for individuals.
My hope is that we can find a way to develop integrated programs that address these needs, and do a good job in doing so.
BTW -- I am passionate about this because my son has Autism -- I left my corporate career, went back to school to get my Masters so that I could be part of this solution. I love my work!
Posted by: Jan Johnston-Tyler | February 14, 2010 at 03:01 PM
Great piece Polly!
Jon can't even ask for a drink of water, left alone without supervision at all times, he would scoop from the toilet bowl.
I have a rigid fear of the future.
Asperger's and autism are poles apart.
Posted by: Alli Edwards UK | February 14, 2010 at 01:08 PM
The labels are interchangeable and arbitrary. My son easily fits into both categories. HFA or Asperger's. When he is in his element, he has Asperger's. When he is in a situation in which he is uncomfortable, or eats something he should not, he is definitely HFA. Are we going to perseverate on semantics or work together to help all the kids on the spectrum? I would love to see the DSM V thrown in a dumpster. Psychiatry did absolutely nothing to help my son improve and anti-psychotics do more harm to our kids. Dietary and other biomedical treatments help, they don't work for all kids. Schools with great support staff are few and far between. My son is 14 and while we are working hard to prepare him to be a responsible, independent adult, there is always that chance that he will need some support.
Let's just do away with DSM V all together and treat ASD as a biologically based illness with a wide range of intensity.
Posted by: Deb O. | February 14, 2010 at 12:46 PM
I can't download the whole article for some reason but this is an interesting discussion. Though I agree with what I've read so far, that needs are different, since we're fighting to get autism recognized as a medical condition and not a psychiatric condition, I believe Asperger's and autism should be categorized by cause. If the cause of Asperger's is basically the same as severe autism, then it's simply the lighter end of the same "spectrum of poisoning". Maybe these things require a different disability code.
I don't consider the DSM to a legitimate authority in any case and autism does not belong in the manual. Neither do a lot of the legitimate disorders or totally fabricated disorders listed in it. Someone once said that if psychiatry dealt with actual brain disease, it would have been absorbed into the field of neurology ages ago.
Posted by: Gatogorra | February 14, 2010 at 12:42 PM
Thank you for a great article. We have one child with severe autism, and one almost fully recovered (with very slight Asperger traits left, if you know what to look for). One will need care forever. The other will be independent and dreams (realistically) of a career in robotics. Their future needs could not be further apart. We need to recognise that these are two, distinct diagnosis. Yes, there are overlapping similarities, but long-term needs are often very different. This proposal to combine the two (autism and Aspergers) fills me with dread, as I don't feel the children on the severe end will be fairly represented.
Posted by: Anne | February 14, 2010 at 12:32 PM
Thank you Polly for writing this. I have been trying to find a way to put into words what I thought of this DSM issue and you have now done it for me perfectly.
A few years ago I started asking a statistician from the Minnesota Deparment of education to seperate out the kids on the severe autism end of the spectrum from those higher functioning and those with aspergers. I wanted this done exactly because of the points you make in your article. The future needs of kids like mine are going to be much more costly (read "aint gonna happen") than those that will only need some moderate guidance in life.
I was told it was a good idea but is impossible. I do not believe that. In fact I suspect they already have a pretty good idea. They also know that the rate of autism for kids born between 1994 and 2001 is double that of kids born in 1990, they have even presented graphs to state legislature showing this. They implied to the politicians that this was due to "the changes in diagnostic criteria" and "the older kids slipped through the cracks" and left it at that.
I have asked many Minnesota State Representatives, Senators, the Department of Health, Department of Education, County Commissioners and even advocacy organizations how they plan on dealing with the tidal wave coming. I questioned, even if only 50% of the approximately 7000 kids that will be aging out of school services for autism in the next eight years need substantial help, who is planning, what is their plan, what will happen to these young adults?
As Polly so politely points out, they seem to have a plan for the folks with aspergers and simply expect that the same will work for kids like mine. As a matter of fact the school of thought being pushed HARD by the Mayo Clinic is that the rate of autism has not changed at all, that the rate of "undiagnosed adults" is the same as the average rate for the 7 to 13 age group in Minnesota - now around 1 in 75, or 1 in 41 boys.
There is also an expectation that money will solve the problem. Parents of Downs Syndrome individuals have been pursuing allowing the parents to keep their children at home and be reimbursed. Good idea, for them, not so much for me and my son with severe autism.
And after all, if society has been able absorb the adults we have now, there seems to be nothing to worry about.
Unfortunately for us in Minnesota, that seems to be accepted as fact, and there IS no plan.
Posted by: Tim Kasemodel | February 14, 2010 at 11:47 AM
Then how come my son needs both things you have listed?
He needs all on the first list, and a little more than half on the second list?
Just saying?
Posted by: Benedetta | February 14, 2010 at 11:03 AM