autism

[Karl_K]

With the anti-vax thread at 6 pages I thought I would start a new thread rather than add it there as I was going to do.

http://arstechnica.com/science/2014/03/whats-driving-the-rise-of-autism-diagnoses-vs-what-drives-autism/

http://arstechnica.com/science/2012/04/new-autism-studies-find-new-mutations-many-genes-behind-the-disorder/

 

[baby monster]

Interesting articles. There was a similar one in NYT recently discussing the role older fathers' genetic material plays where only mother's genetic material used to be studied for mutations. The parents' age at the birth of their first child certainly went up in only a couple of generations. My parents already had 2 school age kids by the time I got around to having my first. And I'm probably one of the youngest moms at our playground.

 

[Maisie]

I wonder how it would be if they developed a medication to treat autism. My son is nearly ten. If he was on medication and no longer the same kid it might be a bit weird.

 

[Asscherhalo_lover]

I teach children with Autism and to say it's a spectrum is an understatement. I have never worked with two children who have the "same" Autism. I think this is one of the most difficult things for people to realize. I also personally feel that a large majority of the "numbers" is that the diagnosing has changed so much. The best thing I could advise any parent to do is to educate themselves as much as possible and get involved with the Autism community as much as they can. That is your best resource to find out what is needed to help your child and what is available. I'm more than happy to answer any questions anyone might have to the best of my ability.

 

[zoebartlett]

Asscher, do you know why they (DSM, I'm assuming) got rid of the Asperger's diagnosis?

 

[ksinger]

Asscher, do you know why they (DSM, I'm assuming) got rid of the Asperger's diagnosis?

LOL! Wow. THAT is a completely loaded question! You realize that the latest DSM-V is highly controversial, and has been rejected by NIMH, and so controversial within its own circles, that Allen Frances, who was the chairman of the DSM-IV task force, has come out firmly against it, and can tell you exactly why. I have his book, Saving Normal: An Insider's Revolt Against Out-of-Control Psychiatric Diagnosis, DSM-5, Big Pharma, and the Medicalization of Ordinary Life. It's very interesting and an eye-opening look at how the process of adding/subtracting things from the DSM, actually happens.

Not an answer to your question, but every time I hear someone mention the DSM now, I think of that now...

 

[momhappy]

I teach children with Autism and to say it's a spectrum is an understatement. I have never worked with two children who have the "same" Autism. I think this is one of the most difficult things for people to realize. I also personally feel that a large majority of the "numbers" is that the diagnosing has changed so much. The best thing I could advise any parent to do is to educate themselves as much as possible and get involved with the Autism community as much as they can. That is your best resource to find out what is needed to help your child and what is available. I'm more than happy to answer any questions anyone might have to the best of my ability.

I don't care to go into any personal detail, but I can speak from experience on the subject and I agree with Asscherhalo. It is SO important for parents to educate themselves and become involved. I also can not stress enough the importance of early detection and early intervention. An early diagnosis can lead to much-needed help, which can be extremely beneficial in the long run. I have known parents who have been in denial. They recognize symptoms, but refuse to accept them and sadly, it's the children who suffer the most. There is help out there for parents who seek it. Do your research, get help, and be involved.

 

[zoebartlett]

Ksinger, no, I didn't know that the new DSM was controversial, actually. I didn't mean it as a loaded question -- it was a genuine one.

 

[Asscherhalo_lover]

Ksinger, no, I didn't know that the new DSM was controversial, actually. I didn't mean it as a loaded question -- it was a genuine one.

Only the authors could answer that question, it is beyond hot button.

 

[ksinger]

Ksinger, no, I didn't know that the new DSM was controversial, actually. I didn't mean it as a loaded question -- it was a genuine one.

I hope you know I was not making light of your question. Reading that book around the time the DSM-V was being published, was an eye-opener as to how the process of including/creating diagnoses for publication, is done, and the some of the pitfalls of psychiatric diagnsis in general. With each successive revision of the DSM, it has become more fraught and much less "scientific" than we'd like to believe.

Allen Frances, on diagnoses rates of autism:

"...the general public misunderstanding of how psychiatric diagnosis work - i.e., that the prevalence rates are always extremely sensitive to any change in definintion. The twentyfold increase in just twenty years occurred because diagnostic habits had changed radically, not because kids were suddenly becoming more autistic.

The autism "epidemic" has three causes. Some part surely comes from improved surveillance and identification by doctors, teachers, families, and the patients themselves. Spotlighting any problem reduces stigma and improves case finding. Some was triggered by the DSM-IV introduction of Asperger's disorder, a new diagnosis that greatly broadened the concept of autism. But about half of the "epidemic" is probably service driven - children get the diagnosis incorrectly because it is the ticket to more attention in the school system and more intense mental health treatment.

We had estimated that Asperger's would be about three times more common than the classic, severe form of autism. But rates have artificially swelled because many people within the range of normal variability (or with other mental disorders) have been misidentified as autistic - especially when the diagnosis is made in primary care, in school systems, and by parents and patients.

DSM-IV may have started the autism epidemic, but other powerful engines drove it forward beyond all expectation. Probably most important was the positive feedback loop between spirited patient advocacy and the provision of school and therapeutic programs that require an autism diagnosis. As the population of "autistic" patients and their families grew, the gained power to push for many additional services - sometimes by initiating successful lawsuits. The additional services than provided further incentive to increased diagnosis. With more people diagnosed, there was then an even larger constituency to push for more services."

And this article, while not written for that purpose, goes into some of the reasons that Asperger's was dropped (Frances does not in his book) and demonstrates pretty well the feedback loop described above, as well as the (dare I say it) the emotional attachment and self-identification that some families and patients have to the Asperger's label, and to the fluidity and subjectivity of much of psychiatric diagnosis in general.

http://www.slate.com/articles/health_and_science/medical_examiner/2013/05/autism_spectrum_diagnoses_the_dsm_5_eliminates_asperger_s_and_pdd_nos.html


Disclaimer: I realize what I posted will likely be controversial. Please know I posted it to add to the discussion, and that the words are not mine, but those of someone with intimate knowledge of diagnosis, and how a manual like the DSM is put together, since he was in charge of putting the previous one together. He spends a good portion of the book issuing mea culpas for areas where he feels HIS group went badly off course, or did not anticipate how out of control things would get with this or that inclusion. He does not spare himself just to slag the version that updates his.

And for anyone who is wondering why I would be so interested, there IS an intersection to my life, since my husband works in a low-income school district where an increasing percentage of their student population is diagnosed with some form of special educational need, (I will have to check with him again, but the 60%+ range keeps coming to mind) but the teachers trained to deal with it are in desperately short supply, or (more likely the case) are just fed up with the abysmal working conditions. They simply cannot hold onto them. Consequently, those kids are being mainstreamed (along with the ELL students who are being put in regular classrooms before they're prepared and are failing miserably) and are crushing the regular teachers.

 

[Asscherhalo_lover]

I can say personally that I have had several students "diagnosed" and educationally labeled with Autism when the diagnosis is clearly not appropriate just so the child will receive services such as speech, occupational therapy, physical therapy and a small ratio classroom.

 

[KristinTech]

I can say personally that I have had several students "diagnosed" and educationally labeled with Autism when the diagnosis is clearly not appropriate just so the child will receive services such as speech, occupational therapy, physical therapy and a small ratio classroom.

Thankfully, I have not seen this very often at all where I live. I'm an SLP in Early Intervention, and I help families through the process of being evaluated by medical and school personnel. Parents generally want to pass on the lifelong neurological diagnosis for the benefit of 30 extra minutes of speech therapy or occupational therapy. I just don't see it.

Many, many more children come away with a medical diagnosis and NOT an educational one in the area of Illinois where I live. We really have to support the families to persist in seeking an educational diagnosis after they've gotten the medical diagnosis. If a child meets the diagnostic criteria for a medical diagnosis, it is very rare that they would not meet the educational criteria. But the process is not always initiated during the transition process, so those extras sit and wait for an extra semester or longer before the child benefits from them.

When I go to national conferences and see international presenters locally (where participants fly in from all over the country), it is fascinating and FRUSTRATING to hear of all the differences in different regions of the country. And that's just me as a service provider! I can't imagine what it is like as a parent.

 

[Asscherhalo_lover]

I can say personally that I have had several students "diagnosed" and educationally labeled with Autism when the diagnosis is clearly not appropriate just so the child will receive services such as speech, occupational therapy, physical therapy and a small ratio classroom.

Thankfully, I have not seen this very often at all where I live. I'm an SLP in Early Intervention, and I help families through the process of being evaluated by medical and school personnel. Parents generally want to pass on the lifelong neurological diagnosis for the benefit of 30 extra minutes of speech therapy or occupational therapy. I just don't see it.

Many, many more children come away with a medical diagnosis and NOT an educational one in the area of Illinois where I live. We really have to support the families to persist in seeking an educational diagnosis after they've gotten the medical diagnosis. If a child meets the diagnostic criteria for a medical diagnosis, it is very rare that they would not meet the educational criteria. But the process is not always initiated during the transition process, so those extras sit and wait for an extra semester or longer before the child benefits from them.

When I go to national conferences and see international presenters locally (where participants fly in from all over the country), it is fascinating and FRUSTRATING to hear of all the differences in different regions of the country. And that's just me as a service provider! I can't imagine what it is like as a parent.

I work in Brooklyn, major differences in what you find here. Many of the parents are not very involved and we have the school "psychologist" who handles all evaluations for the most part. Here a label of Autism often means a social security check, sad but true. It's a very different environment.

 

[zoebartlett]

Thanks Asscherhalo, and Ksinger.

Ksinger, I know you weren't making light of my question. Thanks for the info!