"New Definition of Autism Will Exclude Many, Study Suggests" NYT Article

[Emmeline II]

Apparently the new DSM-5 criteria for this may make a number of those in the higher functioning levels no longer eligible for a diagnosis and this may restrict their access to services. The article is from the New York Times; I'm not sure about accessibility to NYT articles since I registered at the turn of the century and it still lets me in.

New Definition of Autism Will Exclude Many, Study Suggests by Benedict Carey

http://www.nytimes.com/2012/01/20/he...s.html?_r=1&hp

The new analysis, presented Thursday at a meeting of the Icelandic Medical Association, opens a debate about just how many people the proposed diagnosis would affect.

The changes would narrow the diagnosis so much that it could effectively end the autism surge, said Dr. Fred R. Volkmar, director of the Child Study Center at the Yale School of Medicine and an author of the new analysis of the proposal. “We would nip it in the bud.” 70wds.

Edited by Emmeline II - 1/20/12 at 8:30am

[Mittsy]

The link you have posted didn't work for me. This is the one I used:

http://www.nytimes.com/2012/01/20/health/research/new-autism-definition-would-exclude-many-study-suggests.html?src=me&ref=general

Do you think this will affect those  pursuing a Aspergers dx as well? I'm curious because we're in the final stages of pursuing a dx of High Functioning Aspergers for dd, we have already been told she will not qualify for much at all because she is so high functioning and hearing that this new "definition of autism" could restrict what she is eligible for even more is very saddening.

[AbbyGrant]

I don't see how this would affect EI or school services.  It's all about how the child is functioning. A diagnosis does not guarantee services and lack of one doesn't preclude them.  My son would have still been eligible for services from both even if I had decided not to pursue an official autism diagnosis. 

[christinelin]

My DS has an Aspergers diagnosis (or PDD, depending on the day). He has never qualified for public services, but I think he benefits greatly from the therapies we fund privately. I doubt he would qualify for a diagnosis under the new criteria.

I am curious how they will reconcile discrepancies between the ADOS and the DSM criteria. Although my guy might not qualify because of his lack of sensory issues/repetitive behaviors, he has always had (and I suspect always will have) an ADOS score in the Autism spectrum range.

[ErinYay]

I was dx'd with Asperger's in 2010 at age 30, and still would be dx'd with autism under the proposed revision.

The aspie community is largely divided on whether the revision is a good or bad thing- most people who really embrace their aspieness think it's bad- I personally don't care- I think ASD is ASD.

The trick, of course, comes when you bring the really high functioning kids who already slip under the radar into the picture. Those kids who may not meet the new DSM critera but who aren't really neurotypical won't get the tremendous benefit of early help and acceptance- but, on the other hand, many of those kids aren't worrying their parents or educators to the point where they get early dxs anyhow. 

I think things won't really change much- some kids will slip through the cracks due to begin ignorance from their parents/educators, and some kids will get services they need due to the persistence of their parents/educators, and some kids will only have their parents to help them navigate the typical world as they won't qualify for services. 

The biggest problem is addressing insurance issues. For example, my STBX-husband's insurance only covers speech therapy with a 299.00 dx, or specific speech disorder. I think one of the myriad reasons ASD dxs seem to be on the uptick is due to insurance- if your kid needs OT, speech, and social skills help but doesn't have an ASD dx, good luck getting your insurance to cover things symptomatically.

It's a huge issue, and imo, yet another reason the US needs single-payer health care.

[AbbyGrant]

Originally Posted by ErinYay 

I think one of the myriad reasons ASD dxs seem to be on the uptick is due to insurance- if your kid needs OT, speech, and social skills help but doesn't have an ASD dx, good luck getting your insurance to cover things symptomatically.

When my son was in the process of being evaluated last summer, I was shocked to find out that our health insurance, which is a supposedly good plan through a major employer, does not cover treatment related to autism or developmental delays.  Turns out they aren't required to in my state and many others. That means they do not pay for speech or OT for my son who has an autism diagnosis and significant delays.  

Edited by AbbyGrant - 1/20/12 at 5:38pm

[fizgig]

I have a very different perspective than many about this issue.  The short version of my opinion is that the problem here isn't that people will lose a label, its that, by losing the label they might lose services.  Right now for some insurance companies and school districts, an ASD diagnosis = services and no ASD = no services.  This is the real problem here.

Otherwise, I feel like the new DSM will actually give everyone more clear guidelines for an accurate diagnosis.  I feel this way because, under the old DSM, my son could potentially be given a PPD-nos diagnosis.  However, it turns out he has a serious language disorder.  Under the new DSM there is no way he would be considered on the spectrum.  At least in our case this means that it is more accurate.  It matters to me because the kinds of therapy my DS needs are very different than some of the types of therapy often good for kids who are on the spectrum.  For example, ABA therapy can be great for some kids with ASD, but for very social kids who are having receptive language problems it can be counter productive.

Sadly this also means we are having to fight for services because so many of the services in our district are basically geared directly toward kids on the spectrum.  We are in a "no ASD = no services" school district and it is a real problem because DS definitely needs help, he's just not on the spectrum.  It doesn't make him any less severely delayed.

So, I'm of two minds.

1. I think providing a more accurate way to dx autism can only be good for everyone in the long run.  Obviously providing more accurate tools to people to dx what is going on with kids will help everyone get the right kinds of help.

2. However, if it dramatically reduces the number of kids qualify for services, cutting off kids who need services, that sucks. Clearly the problem here is the criteria for who should or shouldn't get services, but I don't know if the criteria will keep up with the new DSM and I suspect some kids might fall through the cracks in the mean time.

[AbbyGrant]

Per federal law, public schools are required to provide special education services to children ages 3 to 21 with disabilities that impact their ability to participate in school.  This includes speech and language impairments amongst other things and not simply autism.  

[Rik-E]

Great if your kid is in a  public school & having issues. FOr the rest of us with medicaid or private insurances it still means the possibility of losing all services.

Originally Posted by AbbyGrant 
 

[AbbyGrant]

Originally Posted by Rik-E 

Great if your kid is in a  public school & having issues. FOr the rest of us with medicaid or private insurances it still means the possibility of losing all services.

I'm not sure what you were quoting of mine since it didn't show up, but if it was about the federal law, that was in regard to the PP's concern about access to services through the school.

Edited by AbbyGrant - 1/21/12 at 8:09pm

[RiverTam]

Originally Posted by Rik-E 

Great if your kid is in a  public school & having issues. FOr the rest of us with medicaid or private insurances it still means the possibility of losing all services.

 Public school systems are required to provide services to all children, regardless of whether they attend the public school or not. They must give services to private school kids and home school kids. If your kids are home schooled, your local district provides services. If your kids attend private school, the district in which the school is located provides services.  Services apply to speech delays and all kinds of SN issues besides ASDs. 

[ErinYay]

Originally Posted by RiverTam 

 Public school systems are required to provide services to all children, regardless of whether they attend the public school or not. They must give services to private school kids and home school kids. If your kids are home schooled, your local district provides services. If your kids attend private school, the district in which the school is located provides services.  Services apply to speech delays and all kinds of SN issues besides ASDs. 

There are a few states, I think, that do require kids to be in the school district to get services, but mostly you're 100% right.

And as far as Medicaid goes, DD currently has CHIP via Medicaid, and it covers everything- if her doctors say she needs it, she gets it, and she only has a dx of "speech delay." Private insurance is a whole 'nother ball of wax, though- she'll require a speech disorder or ASD dx to get services through her dad's insurance, as I said above, so if she needs services above and beyond what the school district will provide, we'll be in a tight spot.

[fizgig]

AbbyGrant, I know IDEA mandates services but in our district there is currently a lawsuit being filed against the district because they have been denying services to kids who are not ASD. They are claiming an "educational diagnosis" that is different than their "medical diagnosis" and basically using that to deny kids services.  We don't want to put DS through that so we are screwed.  There are very bad enforcement mechanisms in place for these laws and so we are basically having to chose between services or a lawsuit.  Bleh.  I am actually hoping that if less kids are on the spectrum because of these DSM changes the district will be forced to change their system.

[AbbyGrant]

nm

Edited by AbbyGrant - 1/22/12 at 2:37pm

[Aufilia]

Originally Posted by fizgig 

AbbyGrant, I know IDEA mandates services but in our district there is currently a lawsuit being filed against the district because they have been denying services to kids who are not ASD. They are claiming an "educational diagnosis" that is different than their "medical diagnosis" and basically using that to deny kids services.  We don't want to put DS through that so we are screwed.  There are very bad enforcement mechanisms in place for these laws and so we are basically having to chose between services or a lawsuit.  Bleh.  I am actually hoping that if less kids are on the spectrum because of these DSM changes the district will be forced to change their system.

Wow, that really sucks.  I hope the lawsuit finishes up quick and the district loses badly.  It's really sad that they aren't providing services to kids who need them because there's plenty of evidence that the sooner services are provided, the better it is for the child. :(

That said, it sounds to me like the problem here is entirely your school district, not the existing law or even the potential changes.  I wouldn't be surprised if the lawsuit in progress effects more change than lowering the number of kids on the spectrum. Certainly I think it would work more quickly: kids don't get a new diagnosis every year, you know?  If they already have a diagnosis I think they'd be likely to keep it, at least for a few years.  DD's getting her developmental eval this month and believe me, I have no desire to pay that much cash out again any time soon.

[EarthRootsStarSoul]

My friend has a son who is in first grade and is about to be diagnosed with Aspergers.  She also said to me that since her son doesn't have 'educational autism' that he qualifies for much less services at school.  I don't even understand the difference between autism and educational autism.  But this totally sucks because we are also about to get the ball rolling for my four year old son to be tested for Aspergers.

[FarmerBeth]

I think the real issue is that other valid and function inhibiting disorders don't seem to get the full level of help offered with an autism diagnoses.  My son was DX'd this year (like some of the other posters here, it was very obvious on the ADOS but not necessarily obvious on the DSM.  He had a previous diagnoses of Tourette's spectrum disorder, OCD, anxiety, NVLD.  He also had one major episode of depression at only the age of 5, and some transient, seasonal depression since.  We already had help with a social skills program and with cognitive behavioral therapy for anxiety without the diagnoses.  But while the medical community was willing to offer us just about every ADHD drug out there (for a now overturned diagnoses of inattentive type ADHD), no one would help with the tics or repetitive behaviors and obsessions.  DS has scarring all over his arms and some of his face from picking, and he's had infections.  He's lost every nail (even toenails) from pulling.  He was refusing possibly contaminated food.  He could get so into a special interest topic that he'd refuse to do anything else.  After years of asking for a medication for the behavior, or help with guiding him through the obsessiveness, all it took was one diagnoses and all of a sudden everyone bent over backwards with help.  I was shocked.  I really hadn't thought it should make a difference.  I know a lot of parents in the Tourette's community, especially, feel like they are constantly fighting for services.  It wouldn't matter if the DSM changed in such a way that those considered to have high functioning autism were considered to have something else, if those other things got services.  I really think functional diagnoses and treatment would make sense, as everyone is so different, but kids get lost in the labeling shuffle.  For the record, DS's obsessive interest type issues are more obvious with age and increased cognitive ability, even with meds, so I think he would still fall under the diagnoses with the new DSM.  It just bugs me that some kids might have real functioning issues and not get help.

[Emmeline II]

Originally Posted by EarthRootsStarSoul 

My friend has a son who is in first grade and is about to be diagnosed with Aspergers.  She also said to me that since her son doesn't have 'educational autism' that he qualifies for much less services at school.  I don't even understand the difference between autism and educational autism.  But this totally sucks because we are also about to get the ball rolling for my four year old son to be tested for Aspergers.

I recommended reading "Wrightslaw: From Emotions to Advocacy" for both of you (Wrightslaw: Special Education Law, 2nd Edition, would be a good idea as well.)

"Educational autism" means that though a child may have a medical diagnosis of Autism he does not require special education services--what is defined as Autism (in education) is not affecting his educational performance. The bottom line is always if/how a condition affects how the child performs in school. Though her son may not qualify under IDEA as having Autism (and I would check that the school behaved appropriately/according to the law) it is possible that he qualifies as OHI (other health impaired) under IDEA and be eligible for the same services. If she disagree with the school's evaluation she can request an Independent Educational Evaluation (IEE) -- there are links below on that.

...they are not required to automatically qualify a child for special education simply because the child has a medical diagnosis of an autism spectrum disorder made by a physician or psychologist.The reason for the differing definitions is that some children with a medical diagnosis of Autism may not require special education services. The opposite is also true: Some children may meet the eligibility criteria of educational Autism even though they do not have a medical diagnosis of an Autism Spectrum Disorder. http://www.mo-feat.org/med_eddiagnosis.htm

This is from Missouri; I recommend finding the version of this document for your state:

Missouri

“Autism” means a developmental disability significantly affecting verbal or nonverbal communication and social interaction, generally evident before age three (3) that

adversely affects a child’s educational performance. Other characteristics often associated with autism are engagement in repetitive activities and stereotyped

movements, resistance to environmental change or change in daily routines, and unusual responses to sensory experiences. The term does not apply if a child’s educational performance is adversely affected primarily because the child has an emotional disability as defined in this document. 82wds http://dese.mo.gov/se/compliance/documents/MCP-FullVersion.pdf

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Under IDEA/IEP, if your child has a disability that adversely affects educational performance, your child is entitled to an education that is designed to meet the child's unique needs and from which your child receives educational benefit.

A 504 is helping your child get the same education that everyone else is getting--more for a student that needs accommodations to help them learn (like sitting next to the teacher) or for behavior, and that they are not punished for things that they cannot control due to the ADHD (like needing to work standing up or not sit inside a group).

[A IEP or 504 is not an escalation or punishment for the teacher/school. It's more about getting all appropriate parties involved and on the same page. The student, parent/legal guardian, teachers, principals, Pupil Services administrators, support staff (i.e. nurse, counselor, psychologist, language/speech pathologist) as well as the student's physician or therapist may be involved in the placement process including the 504 meeting.]

Eligibility under IDEA for Other Health Impaired Children (OHI)

Key Differences Between Section 504, the ADA, and the IDEA.

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Independent Education Evaluations: What? How? Why? Who Pays?

Independent Evaluations: Must Parents Select an Evaluator from the School's Approved List?

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Special Education Advocacy - When Parents and Schools Disagree .

How Can We Get an Independent Evaluation (IEE) by ...