My son is diagnosed with mild to moderate autism.  I’m lucky in that he’s very high functioning – he’s in a mainstream classroom with no aide.  He has just mild delays – he has fine motor and social delays, and he isn’t super coordinated, but one way or the other, he will live a happy and mostly typical life.  The down side?  DSM-IV – the manual used to diagnose not just autism but all other disorders that psychiatrists treat (yes, I have issues labeling autism as a mental disorder, but I’ll let that go for the moment).  It’s in the process of being updated right now, and my concern is that he will no longer have an autism diagnosis.  That’s great, right?  Well, not so much actually.  Mister Man still needs various therapies from speech groups to occupational therapy – and who knows what he’ll require in the future to ensure that he has as full a life as possible.  Without the diagnosis, insurance won’t cover his therapies, and paying out of pocket… ouch.  And there’s also the issue that without a diagnosis, beginning at age 9, he loses his IEP.  Did I mention he turns 9 in October?

There was a great panel at Autism One discussing the old and new DSM versions and many of the issues it encompasses.  These are my notes – completely unedited at the moment.  I found much of it fascinating, and my initial gut is that Mister Man will lose his autism diagnosis.  Whether he’ll gain the new label or not, I’m not sure.  The big question is what to do next.  How will these changes impact you?

NOTE:  THESE NOTES HAVE NOT BEEN EDITED YET.  THERE WILL BE SPELLING/GRAMMAR ISSUES.  I WILL REVIEW THESE LATER TODAY AND FIX THEM.

DSM V is the revised version of what physicians will use and is updated periodically.  They have been looking at the autism diagnosis for about the past five years.  They felt pretty strongly that it is a spectrum and should not be split into different disorders.  If they are going to have autism spectrum, Asperger’s and PPSD will not be diagnosed.  They are also trying to capture other areas like if there was regression, if htey have speech and language or not.  What’s come up lately is that a study has come from Yale with major press that looked at the data sets from DSM IV and found that 55% of those cases would not meet an ASD criteria under the new critieria in DSM V.  We aren’t entirely sure how this will play out.  We have several studies now out showing a significant drop of cases – approximatly 47% of toddlers they diagnosed would not meet the new crtiera.  The panel has also spoken with the DSM panel and they are seeing a net zero change in the trials.  There are some children – 5-10% who are dropping off the spectrum – and some who are now being picked up.  So we don’t know now whose data is more accurate.  There is a question of whether insurance is going to require children being rediagnosed to get coverage or whether school districts will have to report different numbers.

With such a change in the diagnosis, it is really going to muddy the waters in terms of truly understanding if autism is growing significantly or if there is better diagnosis or something else – it is already a controversy and question.

There is a handout showing the criteria of new nad old criteria to see if this impacs you or a loved one.  We are also in a public comment peirod so you can go to comment on this to provide your feedback.  The DSM V as a whole – this is everything from bipolar to PTSD – is scheduled to be published next May, but it is already 2 years late, so there is huge pressure to publish it on time.  The committee promises that they read every comment submitted.  Urges caution – the manual is intended to be updated periodically, so maybe the new diagnosis should go into DSM V-1, still publish now so that we have the time.  Concern is that we don’t have de-diagnoses and that insurance is covering what the children need.  Want to ensure they are not impacting families.

They are also adding social communication disorder.  They are anticipating that some kids who fall off the sepctrum in this new definition would get this diagnosis instead.  It is focused more on the speech and communication but removes the repetitive actions that not all children have.

The work group has been together for about 5 years.  Originally had 28 researchers around the world come together and put into 9 groups.  Should it be 1 spectrum v multiple diagnoses.  What would be the impact of eliminating the diagnosis of Aspergers.  Did a first round of field trials – screened an entire city in Finland and found the number of people diagnosed has been reduced.  Since that time, they updated the diagnosis criteria to address some of these issues.  There is also a study that shows that the new diagnosis has good spectificity that means people aren’t being diagnosed who don’t belong on the spectrum.  There are many, many studies, and all the studies are not agreeing in terms of the impact of the diagnosis change.

Mitch Perlman:
Living with a child with autism is so different than raw research.  Two criteria that are not in DSM – every child with autism is drop dead gorgeous.  As he’s testing these kids, they pick at their nose.  There is some sort of allergy of some sort – not regular picking the nose but picking at it.

It is important to know just a couple quick things.  Psychiatry is not psychology.  The field of psychiatry was never developed as being scientists or clinicians.  The field of psychology was always meant to be the diagnosers.  They are trained to be with people to see what it looks like, they are trained to do the research and diagnosis.  The DSM-V isbeing put out by the American Psychiatric Association.  There are a lot of offlabel prescriptions going on right now.  The new manual needs to be updated so that they cover themselves as prescriptions will no longer be offlabel – particularly for bipolar.  But if you are being medicated for autism, it’s chasing the symptoms, not fixing anything.  This eleventh commandment of covering yourself is not applicable to autism because any prescriptions will be offlabel because there is no pill for autism.

Most research being done is being used via DSM-IV to see do they fit PPD or Autism or other.  What we’redoing now is 30 some odd criteria that are questions, rather than letting someone diagnose, it is either a yes or no to these questions.  The clinicians just need to say do they meet the criteria for these questions.  This includes all the diagnosis criteria for Autism, Asperger’s, PPD, social communication disorder.  This keeps the provider from being biased because they aren’t diagnosing, but it tells the researchers what they meet the criteria for, and if they don’t meet a criteria, where is the failure.  Then can go to the committee to say “if you include this piece of crtieria, it will solve a lot of the issues” and they will give everyone the data so they can do other statistics and also see what they have done.

The DSM has always had subtypes for certain disorders.  ADD with and without hyperactivity, ADD with and without other subtypes.  Their research can start to help promote the thinking for these types of subtypes.  No two children with autism are alike, but we do know that there are certain children that respond to diet.  There are certain children who received vaccines and regressed.  There are certain children who have regressed that we can’t tie into vaccines.  Because we include all these subtypes into one diagnosis, we end up with muddled studies that makes is much more difficult to untie everything and start to see what makes a difference.

The first trial of this will be with clinicians.  Then we are opening it up worldwide to log in with a username and passwords.  The Safe Minds newsletter will put up updates around when this opens up so we can participate.  If you want it for your own personal usage, he can get this to us to use on our computers – not part of the research but so we can look at and how this relates to the different criteriafor our own children.

We are not doing retroactive diagnosis but proactive.  Don’t use it to look at your previous patients but instead use it for the next patients who come through your doors who you suspect may be on the autism spectrum.

Even after the DSM-V is published, we can still make an impact on this.  We can urge congresmen or state legislators or the people diagnosing our children to do the old and new critiera together for at least two years.  We have a five year window for MMPI when we went to the new version so we could learn how to take advantage of the previous research and apply it to the new criteria.  Diagnose with old and new criteria so we can see the impact and how this goes.  The American Psychological Association is likely to ask if not demand that this is the way it be done.

In the beginning of DSM-IV, it states that this is a work in progress.  As a worst case scenario, we can still bring in new research and make an impact via legislation and other methods.  There is no group of people as cohesive and passionate as those of parents of people with autism.  You are more educated about your children’s diagnosis and you don’t just sit back and say “we lost.”  Again, the manual is psychiatry.  Who is diagnosing your kids?  Psychiatry is not your first line.  It’s the psychologists and others you turn to.

Jody Barrow:
Insurance carriers are driven by language and definitions.  They are driven by the language in the statutes and the language in the policies.  It is important that we look at the language in the statutes.  California, Illinois, New Jersey – all compel coverage for diagnoses that fall under PDD.  PDD will no longer exist, and carriers will go with the language in the statutes.  Worst case standard, they no longer have a coverage obligation.  There are going to be some carriers out there that are going to make that argument.  Best case scenarios is that most statutes either discuss specific diagnoses, but if the new diagnoses don’t cover the same children, they may have issuses.  Recommended that social communication disorder be added to the language in the statutes.  In New York, there is a statute in the work that requires that insurance carriers cover under the definitions of the old DSM.  If the new DSM loses people, that is who will not be covered for new cases.

There is a concern that insurance carriers will require people to get re-diagnosed.  There is definitely going to be an issue.  If a child falls outside the new criteria for autism, they aren’t going to get the speech, OT, ABA, etc that they said they needed this because there is no longer research showing that this is an efficacious researched based need for this.  There is no research right now any new disorder because they are brand new.  This is going to be an issue to get coverage for these kids.  It is important to think of how this is going to affect kids.  If we have a state mandate, it is important to find out how it is drafted and see how we can change it to ensure that people get what they need.  Require doctors to use both DSMs for a certain number of years to ensure there is coverage until research is completed with new diagnoses.

If an insurance company can argue that there is no requirement to cover a therapy, then we are stuck to get insurance paid as we have to show medical necessity for the treatment and for the diagnosis.  Possibly if you have a child who is mildly autistic and may fall off the spectrum, they may be able to get an alternate diagnosis so they can get some types of therapy that those will cover – e.g., pica.  Many insurance have exclusions for developmental things that they don’t cover or it’s only for short term therapy.

For states that have parity acts where they don’t have a state mandate, then they have to provide medically necessary therapies.  If a child falls off the spectrum, they are also not going to have a coverage right under state parity acts, which is often the last line of defense for coverage.

Steve Kossor:
With DSM-Iv, we are talking about a diagnostic system where you have to take some from column a and b and c, etc.  Then you get to an overall agreement on the diagnosis.  Circle the areas that relate to your child.  Then look to the DSM-V side and circle the words that you circled in the lower left corner and you’ve translated the DSM-IV diagnosis to a DSM-V diagnosis.  Both of these are written at about an 8th grade level, so you can diagnose autism “Read a  cookbook and follow the recipe”  There is not the evidence yet that DSM-V is going to be a train wreck, but there are suspicions.  In the psychology/psychiatry/mental health field, for every expert there is an equal and opposite expert.  Show your comparison of your diagnoses to your licensed practioner who is your ally.  You need an ally on this one.

You have to find a courageous professional who will do the right thing and then render a diagnosis and based on the criteria and go to the insurance  company.  I know this child, I observed and interacted with the child, I went to the school, and I believe the child has X.  The insurance company 99 time of 100 won’t try to challenge the diagnosis.  You want to have the DSM to help your child.

In New York, there is a bill proposed A9983.  In Senate 7072.  These are the bills mentioned earlier to have insurance still cover under the old diagnoses.

There is a federal mandate out there to compel all large group and self-funded insurance groups to cover ABA therapy and other therapies for autism.  ABA in the research literature is only validated for autism disorder.  There is nothing published for social communication disorder because it doesn’t exist yet. 

Video everything – there is nothng better than video to show impairment on a daily basis with your child. Put together a video clip whenever you have an evaluation so that you can easily get this to the necessary people to help the diagnosis.  Or write “A day in the life with my child” to send to the evaluator that will be added to the report, so that you can really feel the child and get more data to them.

One comment or concerns over multiple diagnoses on claims forms.  1 is the primary diagnosis your child has that connects with the claim.  If therapists put multiple codes, insurance companies tend to choose the one that that will deny the claim and doesn’t go with that diagnosis code.

For children with sensory issues, the DSM-V does use this as more of a criteria now than DSM-IV.  So long as your child still falls under the new autism diagnosis, you will be fine getting the OT covered.

For many companies, they are self-insured.  While they hire insurance companies to process claims, use their in network doctors, etc, the claims come from the employers’ pocket.  They are not covered under state mandaters.  You need to truly get a copy of the contract to work through this and see what is covered and not covered.  You can also appeal directly to the company, as they rule the plan.  Many times they will make exceptions even when there are exclusions written because they know how autism touches so many.

One member of the audience mentioned that her insurance company (BCBS) has told her that speech disturbance 784.5 is best code to get services coverage for what she needs.  Potentially look into this to have providers – legitimately – utilize this diagnosis code when submitting claims.

For those children who have not gotten a diagnosis on paper, get the diagnoses done now so it’s in stone and on paper.  For those who do have somthing on paper, look at the criteria to see where you are going to fall under the new crtieria.  For those who are receiving medication for anxiety under autism, get a diagnosis for anxiety so you can continue to have medication covered if you no longer have the autism coverage as a backup.  Just be careful of how you put the diagnoses and codes on claims so they aren’t denied as discussed above.

    Comments

  • Pat


    Wow, this is complicated. I certainly hope your son's therapies will still be covered by insurance after he turns 9. I hadn't really thought about the differences between psychiatrists and psychologists before. You explained it well. It was interesting to read that the words used in describing your son's problem areas are VERY important. Best wishes to you and your family as you follow through on all of this!

  • Sandra


    Goodness, this will mean a significant amount of change in all areas and from all perspectives. It seems like the changes would have many families up in arms about insurance coverage and access to therapies. I do hope this pans out well, for your family and autism research in the future.

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