Posts Tagged ‘
diagnosis ’
Sunday, December 30th, 2012
Two themes stand out for me this year with respect to research on ADHD: 
Diagnosis: We continued to observe a potential paradox – ADHD may be overdiagnosed, yet many kids do not receive proper diagnosis and care. Here’s why. The overdiagnosis aspect comes about because kids are given a label of ADHD without going through a rigorous interdisciplinary evaluation. And that’s where some kids slip through the cracks – some kids with severe symptoms do not get evaluated properly and struggle for years without appropriate intervention. So even though studies suggest that the rate of ADHD is very high (like some of the data reported by the Centers for Disease Control and Prevention), that does not translate into saying that all kids who may suffer from high levels of severity and impairment are getting the clinical services they need.
Treatment: The debate about using medications to treat ADHD got more extreme this year. A controversial opinion piece by a leading developmental researcher essentially negated the role of biology as a root cause of ADHD. On the other side of the issue, there were suggestions that kids as young as 4 years of age should start receiving medications to control their symptoms – and there were reports that in some (economically disadvantaged) areas of the country doctors are giving kids ADHD medication (without assessment and diagnosis) to try to improve their behavior and performance in school. Lost in the debate is the very real need for behavioral treatments that focus on parental strategies to help kids with ADHD function better both at home and in school. My viewpoint on all this continues to be that behavioral approaches should be tried first and should always be in place – and that once those effects are established clinicians and parents can have a more meaningful dialogue about the possible additional advantages of medication.
Time For Review via Shutterstock.com
Categories: Behavior, Health, Intervention, Must Read, Parenting, Red-Hot Parenting | Tags: 2012, ADHD, diagnosis, Health, Kids Health, medication, medication for ADHD
Thursday, October 4th, 2012
The impact of the newly proposed diagnostic criteria for autism have been debated this year and the conversation continues with a new study published online in the American Journal of Psychiatry (you can read it here). The key issue has been the extent to which the new criteria will lead to fewer diagnoses of autism. Here’s a summary of where things stand right now. 
1) The new criteria lumps all disorders along the autism spectrum together under one diagnosis. This means, for example, that separate criteria for Asperger’s Syndrome would no longer be in place. Whenever diagnostic lumping takes place, the criteria become less specific, in order to take in a large range of symptoms. A result of this is that clinicians making diagnoses have to use even more professional insight and discretion to determine if a diagnosis is warranted because the criteria are more general than before.
2) To account for the wide range of symptom expression that can be observed within this broad autism spectrum, there will be a severity scale, ranging from mild to severe.
3) A key concern has been that the new diagnostic criteria will result in fewer diagnoses of autism in the future. Some have claimed that this effect will be profound. The study cited above suggests that less than 10% of current cases would no longer meet diagnostic criteria for autism.
Now this is where the fuzziness in the debate comes into play. Whenever a child is not diagnosed with a condition, then the availability of services gets reduced. Do these 10% of kids still need services? Will they get a diagnosis that will permit access to services? This is really the crux of the question. Furthermore, there are suggestions that this study was a “best-case scenario” because it focused on more clear-cut cases and used expert clinicians with lots of experience (see, for example, the New York Times report on this). The implication is that once the new diagnostic criteria are used out in the real world, with a range of clinicians in terms of experience, the number of cases that will not be diagnosed may be higher than the 10% reported in the study.
Earlier this year, I asked an experienced clinician – Dr. Gil Tippy – to offer his take on the matter. He suggested that the rates of autism will not be severely affected if experienced clinicians are doing the assessments. His greatest concern was that the use of the new severity criteria would substantially decrease the number of kids who could receive services for their condition. His argument was that insurance companies could deny coverage to those who were given a “lower” severity rating of mild impairment – even though that “mild impairment” requires intervention. You can read the entire blog post here if you are interested in the details.
So I think there are 2 take-home messages right now:
1) The rate of diagnosis will go down – but it’s not clear to what degree.
2) The impact of the severity criteria on the ability of families to secure coverage needs to be considered in more detail, as this could result in impediments to secure treatment.
If you read Dr. Tippy’s suggestions noted above, he offers advice on how to advocate to ensure that kids are not denied services in the future. This is especially important as early screening and early intervention continue to be the most effective strategies for accelerating the development of youth diagnosed with autism. To that end, it’s important that all parents know the early signs of autism that would indicate the need for early screening – if you haven’t seen it before, here is a prior blog post that lists 7 key early signs that should never be ignored.
Autism symbol via Shutterstock.com
Categories: Behavior, Health, Intervention, Must Read, Parenting, Red-Hot Parenting, Stories | Tags: autism, autism spectrum disorder, diagnosis, DSM-V, early intervention, early screening, Health, Kids Health
Wednesday, January 25th, 2012
The debate about proposed changes in the way that autism and related disorders is diagnosed is not over. There are two issues at the heart of the debate. First, there is a scientific discussion focused on how to best diagnosis a number of disorders that both share core clinical features and also differ in terms of symptom expression. Second, there is an extremely important conversation going on to determine if the suggested modifications could result in the future loss or denial of coverage for treatments that are known to be effective. In order to understand better this part of the debate – and what parents and advocates can do to have their voices heard – I have the privilege of sharing insights from Gil Tippy, PsyD. Dr. Tippy is the Clinical Director – and one of the founders – of the Rebecca School in Manhattan, a school for children and young adults with neurodevelopmental disorders of relating and communicating. He has been a teacher, a psychologist or both for 33 years. He is the co-author, with Stanley Greenspan, MD, of Respecting Autism (Vantage Press, 2011). Dr. Tippy also has a large private practice in Oyster Bay, NY. 
Here are his thoughts. I urge you to read them carefully and completely as he identifies what he sees as the primary way services may be denied or withdrawn if the proposed changes take place. Please note that the quotation marks define where Dr. Tippy’s remarks start and end.
“The controversy boils down to this. The committee who has been given the job of writing the Autism part of the new Diagnostic and Statistical Manual (DSM 5) got rid of the diagnoses of Autistic Disorder, Asperger Disorder and PDD NOS, and replaced them with the diagnosis of Autism Spectrum Disorder. This new ASD diagnosis will have two severity scales, to determine how severe the ASD is for the individual child or adult. The fear seems to be that some people who currently have a diagnosis on the autism spectrum will not meet the criteria for the new ASD. A concerned clinician even did a study cited in the New York Times article that showed that some people currently diagnosed would no longer get the diagnosis. Needless to say, people were scared at the prospect of losing services for themselves or their loved ones!
I do think there is good cause for alarm, but not because people will not longer meet the diagnostic criteria. After studying the new proposals for the last year-and-a-half, I think that no child or adult, previously diagnosed with an Autism Spectrum Disorder by a thoughtful clinical professional, would not meet the new criteria for Autism Spectrum Disorder. So, the concern I speak of is not from the clinical point of view. The main concern that I have, and that I think is very real given historical precedent, is that state and federal governments, and health care payers, will use the new severity scale to exclude those people who look like their ASD is less severe. Companies and governments are currently in the business of cutting costs and budgets, and I am concerned that they will use the new severity scales to reduce payment to people.
There is great hope here, however. Everyone who currently receives services or whose loved ones receive services can speak up! What is critical, where we need to take action, is in letting our state and federal legislators know that we vote, that we are watching this issue closely, that we demand appropriate coverage for autism, and that we will not compromise. We need to state, unequivocally, directly to our representatives, that we will not support a reduction in services on the basis of this new set of diagnostic criteria. This is especially important now. The Affordable Health Care act, which will be finalized by 2014, will look to how the states have handled the issue of the new Autism Spectrum Disorder diagnosis. How the states act, particularly key states like California and New York, will directly influence how the AHCA is written and interpreted. That means that now is the time to begin to tell your legislators how you feel.
For me, the issue boils down to advocacy. I would like my overall message to be that the proposed changes in diagnostic criteria are worth being worried about, but not because the clinicians will exclude people from treatment; they will continue to diagnose and treat appropriately. If you, or your son or daughter has an appropriate diagnosis on the Autism Spectrum now, responsible clinicians will find that you or your children meet the criteria for Autism Spectrum Disorder under the new guidelines. The place where we need to put our energies is in advocating with our elected officials (on the state and federal level) to not allow our children to be excluded from appropriate treatment based on the new severity scales associated with the diagnosis. The time to do this advocacy work is now, as health care legislation is in the works, and powerful lobbying groups will go in and speak to your legislators if you don’t. Parents and people with the diagnoses need to be the people who are directing this legislation. If you do not feel like you can go directly to your representatives, go to the not-for-profits you support who hire lobbyists to influence legislation. Tell them that you do not wish to have them advocate for one behavioral treatment or another as they are now, but that you want them to advocate for the continuation of appropriate behavioral services under the new diagnostic criteria and under the new health care law. Insist with your favorite not-for-profit that they need to follow your wishes, or you will no longer support them financially. There is power in numbers, and if we all joined together we could assure a better future for ourselves and our children!”
Given Dr. Tippy’s experience servicing children and families with neurodevelopmental disorders, I hope you give his perspective some thought. But most importantly, since this debate is not over, I encourage you to find a way to have your voice – and story – heard in order to ensure that kids who need services get them. It is critical to join the conversation now to express your viewpoint as the debate is not over.
Categories: Behavior, Health, Intervention, Must Read, Parenting, Questions, Red-Hot Parenting | Tags: Asperger Disorder, autism, autism spectrum disorder, diagnosis, DSM 5, Health, PDD NOS
Wednesday, August 31st, 2011
This is the last of three “Q and A” sessions I’m conducting (with myself) to sort through the complex issues raised by the recent suggestion that ADHD is on the rise, and now thought to affect nearly 1 in 10 kids.
If ADHD is more common than ever, does that mean that all kids with ADHD are getting diagnosed?
Not necessarily. Many kids are not properly assessed and diagnosed by appropriate clinicians. Remember, for a child to be diagnosed, that child will either have to be referred for assessment (e.g., by a school) or the parent(s) will have to seek out a professional opinion. There are undoubtedly many children who have symptoms of ADHD, but do not get a full diagnostic screening. So if a parent thinks their child is showing signs of ADHD, or if they are told by a teacher that they should consider that possibility, the most important thing to do is work with either their pediatrician or school to get a referral to a qualified team of professionals who can perform a comprehensive screening.
Why is is “comprehensive screening” necessary? What does that mean?
Just because a child is showing evidence of ADHD, there could be a number of things going on clinically. There could be, for example, an underlying learning disorder, or other medical conditions. Ideally a team of professionals will conduct a complete assessment to rule out other possibilities.
But what if the screening concludes that a child has ADHD? What happens next?
There are lots of things to consider clinically. ADHD comes in a variety of forms — some kids can have, for example, just problems in paying attention without showing hyperactivity. It’s also important to determine the level of severity (it can range from mild to severe) and how much it interferes with behavior at home and in school. The diagnosis itself isn’t the most important thing — the key issue is to figure out the nature of the problem behaviors so a plan can be made to change them.
That means medication, right?
Not necessarily. Although medication helps a number of children, there are also behavioral methods that are effective and should be considered as well. It can depend on the type and severity of symptoms, which is why assessment is so important.
Last question. Aren’t all kids inattentive and hyperactive? Why label kids?
The clinical issue is when kids are much more inattentive and/or hyperactive than most other kids their age and gender — and especially if they are showing problems with school work or functioning at home. The diagnostic procedure is a way of determining if children are showing impairment and could profit from intervention, so that a plan can be made to make their life easier and help them do as well as they can in school.
Read the Previous Posts in the Series “Is ADHD On the Rise?”:
