This is an historical post from an earlier blog, Adopted Son of the Autism Family, which I had before this current blog. It is re-posted without modification (other than this introductory sentence).

First of all, I’m sorry for not writing more content for my blog recently. We’ve got something very exciting coming up at my Center, which is still unfortunately under wraps. It’s going to be public knowledge soon, but let me just say it’s incredibly exciting, and it’s kept me incredibly busy.

I’ve also been a little reticent to post on the topic of the DSM-V, for a variety of reasons, although I’ve tweeted about it and e-mailed privately with people I value highly in the autism community. This is in part because my own view, as a pragmatist, has been evolving, and in part because, the more I think about it, the question of whether the “DSM-V got it right” is really fundamentally the wrong question to ask.

Dr. Thomas Insel of NIMH wrote a post a few months ago that many of you have read. I think it raises some great points while simultaneously being somewhat disingenuous. He raises an analogy between how we diagnose complex neurodevelopmental disorders like autism and how we diagnose heart attack. I think this is as unreasonable as comparing how we diagnose cancer with how we diagnose leg fractures. Let alone that heart attack is ultimately an acute illness and autism is a developmental concern, this creates a false dichotomy in which psychiatric diseases are arbitrary and non-psychiatric medicine is black and white. I don’t mean this as disrespect to Dr. Insel — rather, I think that he (and the proponents of RDoC) are thinking radically, but they’re actually not thinking quite radically enough. I think this is true in part because RDoC is a NIMH project — a mental health project. Thus, it fails to be radical enough by failing to stop and critically ask how diagnosis occurs in complex disease states outside of of psychiatry. Even just a step as far as neurology is highly informative.

I think epilepsy is a great study, and it’s accessible to me, since I wrote my dissertation on epilepsy, and because, as a neuropsychologist, I’ve spent a large amount of time by the sides of children and adults both who have “neurological” disorders and those who have “psychiatric” disorders. Just briefly about epilepsy, it is a complex cluster of disorders that have the common feature of recurrent, unprovoked episodes of electrical abnormality in the brain (that is, epilepsy is, in essence, seizures that occur recurrently and at least sometimes in the absence of an acute medical cause such as fever). Diagnosing epilepsy is complicated — although there are some very well understood forms of epilepsy, in many complex cases, multiple diagnostics (EEG, MRI, PET/fMRI, MEG neuropsychological evaluation, etc.) can provide only partially overlapping results. Thus, some cases of epilepsy are not purely algorithmic — there is no conceptual machine whose crank can be turned and spit out a reliable diagnosis without use of clinical skill, at least not in all cases. Many cases of epilepsy are also “idiopathic,” or “cryptogenic,” meaning that, although we have possible models for how they came to be and why they occur, we don’t really understand their biological basis. The diagnosis of epilepsy is also evolving over time as new instruments and techniques come into use. Thus, epilepsy highlights the fact that complex disorders are not black and white, even outside of psychiatry. The ICD-9 has diagnostic groupings for epilepsy. The ICD-10 has diagnostic groupings for epilepsy. Note how very common conceptual classifications of epilepsy, like medial temporal lobe epilepsy, with mesial temporal sclerosis, are not in either the ICD-9 or -10. And yet the world does not end, and unlike children with autism, children with epilepsy (including children with autism and epilepsy) actually get access to proper and efficacious treatments … for their seizures. How do they do this? By way of classification schema that focus solely on the question of how we do best by people with seizures, rather than on some broader and amorphous question like “what is mental illness?”

This is where disingenuous comes in. These other complex disorders have in common that, although there are ICD diagnostic classifications (which change only slowly), there is international consensus driven by experts in that field who are mutually accountable and accountable to stakeholders in that same disorder community. It is the International League Against Epilepsy, ultimately, and not the American Academy of Neurology, that has traditionally taken the lead on epilepsy classification, and they do so with an eye to making progress in epilepsy, not worrying about whether there is some grand scheme in which the needs of people with seizures are not over-weighted against the needs of people with peripheral neuropathy. In contrast, in the DSM process, members of the autism professional community are picked by a team of psychiatrists, and then paraded in front of psychiatric review committees, and autism is put in the position of selling a diagnostic criteria onto psychiatry, for absurd reasons such as limiting the overall rate of psychiatric diagnosis. A sensible diagnostic process has to be driven by autism stakeholders, and not as part of some package deal for psychiatry, and this is not going to happen if “mental health” is held in a ghetto for “disorders” that aren’t “real.” (Which is a concept no parent of a non-verbal child with autism has ever worried about!).

The second major distinction between other complex disorders, epilepsy again as an example, and the way autism is treated today, is that it is well accepted outside of psychiatry that, in the post-modern era, knowledge can advance rapidly, and definitions will not be static. The diagnostic basis for autism should change when the data says it should change, not when there is a decision to make a new DSM. Other fields get by fine with making as-needed changes to the accepted practice for a disorder, without changing the related ICD codes. Note that this discussion does not really occur in other complex aspects of medicine — in spite of how quickly, for instance, cancer knowledge has been changing (while we are implementing, in the USA, an ICD that is already 20 years old). As far as I know, other fields dealing with complex disorders do not have or need a “bible” governing practice, but rather have many practice guidelines that are updated as needed and specific to diagnostic groups and entities.

So, my point in examining epilepsy is that, really, asking if the DSM-V got it right is the wrong question, because the DSM itself has become the answer to the wrong question. RDoC is a nice idea, but I’m not sold on it, particularly because it continues the tradition of an arbitrary ghetto that pulls psychiatric disease together and apart from other kinds of diseases (thus, for instance, emphasizing similarities and differences between autism and schizophrenia, over similarities and differences between autism and epilepsy). And, it is really not necessary, even with very complex disorders, to have a central “bible” that sets criteria in stone, in order to make progress (rather, to the point, one would have to ask why psychiatry has not far outstripped all other medicine, having had this advantage for decades).

In this way, I worry that the NIMH itself is as flawed a way to solve this problem as the APA (their APA, not ours) is. The real solution should start with the radical concept of simply considering these psychiatric disorders in the same way we consider complex disorders in other parts of medicine. I honestly do not know exactly what the answer is. I think there are almost certainly differentiable neuroendophenotypes within autism, and I think that mixtures of neuropsychological results, genetics, neurodiagnostics, and other markers will likely enable us to diagnose them correctly. I personally doubt that they happen to take the form of the DSM-IV framework. But, I think, in order to solve this riddle, we need to focus on autism and not engage in grand bargains, whether they be NIMH or APA driven.

This is an historical post from an earlier blog, Adopted Son of the Autism Family, which I had before this current blog. It is re-posted without modification (other than this introductory sentence).

Editors note: please give a warm AutismFamily welcome to Neha Siddiqui, our first guest poster!

https://www.youtube.com/watch?v=mE7Mq7pLdwI

This is an historical post from an earlier blog, Adopted Son of the Autism Family, which I had before this current blog. It is re-posted without modification (other than this introductory sentence).

I get accused sometimes of being an ABA (Applied Behavior Analysis) proselyte. Most typically by people who don’t know me or my professional field. As a neuropsychologist, I’m really clinically involved in autism on the “front end” — I diagnose kids and develop treatment plans. Because I run my autism program, I get to also use that as a means to drive therapy and hold it accountable. I don’t just evaluate kids and recommend therapies and never see them again, but rather I re-evaluate them, typically annually, to determine if they are growing and gaining skills, to determine if new approaches are merited by new problems or challenges at a new level of development, and to give the family a central collaborator in myself to help their child thrive.

My simple four-step model of treating autism

When I do that, I integrate a variety of approaches — for young children with autism, I almost always recommend a behavioral intervention, whether ABA, PRT (often if ABA cannot be accessed), or family therapy (typically when skill level of the child is higher). Our early intensive behavioral intervention (EIBI) program is the go-to route for children who are below age level in social/functional communication skills, self-care skills, play skills, or other developmental skills in the context of autism, but I don’t just “throw” children into it without thinking carefully. In our approach, I don’t recommend speech & language pathology, family psychotherapy to aid in friendship development, or other in-clinic services until children are at a threshold level of skill (typically I will talk about these therapies once children are around the verbal level of the mean normally developing five-year-old, based on the logic that many group activities for children, including formal schooling, are designed for children starting at about this level). I will also consider medical diagnostics a family and their physician should consider (MRI, EEG, genetic testing/consultation), dietary or other complementary interventions, academic recommendations, and informal things the family can do at home. I rarely recommend medication before age five years, but after that I will recommend medications where appropriate, largely following the kind of guidelines in this practice parameter.

In this context, ABA-based interventions like the EIBI package are my go-to behavioral intervention because they’re the most effective. I’m not a behavior analyst, although I am an affiliate ABAI member. Let me be clear that I choose ABA for my kids because it has the evidence, and because the evidence from large scale trials correlates closely with the evidence we see in our own clinic of children making dramatic gains (like the boy I mentioned here). And it does so without a lot of side effects (this is a topic for another blog, but our children have fun in our EIBI clinic… anyone who wants to know more about this is very welcome to buy a ticket to Grand Rapids, MI and see for themselves). Let me also be clear that ABA is not a wonder drug. Even very famous people tried it for the wrong things with disastrous results. Dr. Ivar Lovaas, the man who proved our kids could make double digit IQ gains and go from a 2% chance of mainstreaming to a 50% chance via 40 hours a week of intensive behavioral therapy, also tried to use ABA to “cure” children of unacceptable gender identities, with now unsurprisingly disastrous results. Moreover, if something does come along that out-performs ABA, you can bet that I will know about it before almost anyone, and that I will actively be planning to implement it in my programs and deliver it to the children who’s autism care I manage. Because my job is to help them thrive absolutely the best that they can.

In the meantime, my question is, why is anyone doing anything different? Why are there diagnosticians who work with children with autism who think that “good” practice is to prescribe them Risperdal, note every three months that they’re doing “well” (while they can’t hold a conversation and aren’t learning anything in school)? Why are there clinicians who put children with autism in other therapies (whether Floortime or Auditory Integration Training) as first-line therapeutic options because they “like” them? What on earth would make a clinician think that what they “like” or “don’t like” trumps the evidentiary basis?

I’m not a proselyte of ABA. It fits into a larger package for me. For young children with autism, who have limited skill acquisition and significant behavioral barriers to learning, it does better than anything, as monotherapy. If the children are aggressive, medications can help. If they are school age and learning, medications sometimes also help, particularly if they are dysexecutive in neuropsychological testing. If they are above a five year old’s verbal level, I’m thinking about getting them into team sports, martial arts, theatre or dance, and I’m thinking about giving their parents tools to help them make and keep friends. I’m thinking about getting them in our Puzzle Partners informal social supports programs, once their teenagers. I’m thinking about getting them through college and into professions.

But given the current state of the art, I think it’s completely absurd to be doing this without ABA, and until something better comes along, I shan’t dream of it.

This is an historical post from an earlier blog, Adopted Son of the Autism Family, which I had before this current blog. It is re-posted without modification (other than this introductory sentence).

After the two day intensive autism workshop, I continued to make many great connections and learn a lot that I will be taking back to Michigan. The next three days of AACRC were definitely just as invigorating as the first two!

A significant part of the second half of the conference had to do with continuing to reduce restraint and seclusion in residential care. Residential care, for those less familiar (and it keeps a low profile) is an intermediate level of intensity for kids – mostly teens – who no longer have the acute stabilization needs that justify a psychiatric hospitalization but also are not ready or able to return to the community. It represents an ongoing process to make life for these kids both more therapy/improvement focused and also do this in a way that limits the restrictions placed on them. In the “old” days, these kids ended up in “institutions,” which were typically locked facilities, that, honestly, focused on warehousing children rather than helping them thrive. There was some limited therapeutic component to these programs, but the goal was rarely community re-integration, and most people who fell into this “system” we’re slated to spend the rest of their lives in it. There was usually little, if any attempt, also, for children to be engaged in the community, doing all the things their peers were doing, while still being based out of the treatment facility. 

The “State Psychopathic Hospital” operated by the University of Michigan in the early 1900s

The residential treatment center was a big improvement over the institution because it was designed to continue stabilizing these kids (and adults as well), give them skills, and teach them to function in the community, with the goal of getting as many kids as possible back into community placements – back to their birth home, to  extended family, or into a new adopting family. Those who could not achieve these goals could still at least step down to a “group home,” where they would have freedom of movement and some self-determination. 

I am fortunate to spend this week learning about innovations in children’s residential services, including a two day workshop on how to serve children with autism who need residential placement. (which just ended!) This is a tough part of what we do. I’d love to live in a world where residential services were not needed (and things like our EIBI clinic will slowly reduce the number of children, at least with autism, who need it!). But the reality is that these challenging kids will not thrive if our “A game” is not dedicated to them, and yet they’re frequently an afterthought. I only half joke when I proposed an alternate mission statement to my boss, that we take the kids everyone else gave up on, and we change the rules so that they, too, may thrive.

This is part of yet another weird paradigm shift for me in my career. Later this month, I’m sitting for the fourth and final phase of board certification in clinical neuropsychology (the ABPP  system mirrors fairly closely the ABMS system in medicine, both systems recognizing specialists after they have completed the entire licensure process, to become psychologists and physicians, respectively). ABPP represents the culmination of a process I started 11 years ago to leave engineering (two years “catching up” on psychology via evening classes and learning psychology research at Wayne State University, four years at the University of Florida, a year at the University of Chicago interning and two years at Mary Free Bed Rehabilitation Hospital as a fellow, prior to my nearly two years at Hope Network). It’s been a long but tremendously rewarding road (and I agree with Neha’s tweet!).

All this left me knowing neurological injuries, neurodevelopmental disorders, diagnosis, treatment planning, developing a research program, and collaborating with physicians in a hospital setting, like the back of my hand. I did not expect (almost a year ago) to also take on the responsibility of overseeing and leading children’s residential services alongside my outpatient autism program. I have a great team, including the residential program director, Niki, who is just awesome. But, I have had a lot to learn! And that includes a lot of things I wish I didn’t know about the bureaucracy that surrounds the residential world. However, I love to dive in feet first. So if I’m going to lead residential, I’m dedicating myself to leading it far into this 21st century. And, hopefully, still manage to pass my neuropsychology boards, which will have nothing to do with any of this!

And thus, I came to New Jersey. The American Association of Children’s Residential Centers is the nation’s premier organization in this area, and I want to learn from and with the best. I’m going to lectures not only autism but Trauma Informed Care, treatment and discharge planning, aftercare, integrating medical and behavioral care, and several other topics.

As I mentioned, it all started with a two day autism fest. Which is, as Neha said, awesome. All-you-can-eat DRO, RIRD, and FBA (and you heard the way kids with autism speak can be repetitive and self-stimulatory!). Stimming / fidgeting toys at my table waiting for me at the lectures, too! I saw some great things that I’m taking home as I think about where I want our residential care to go next.

• I love that everyone here is very humanistic in their motivation to serve kids woth autism who need residential placement. Like us, they work hard to understand behavior based on the premise that, when the function of problem behavior is learned, new behaviors can be taught or the behavior can be treated, rather than the child being labeled as a “bad kid,” and us moving into punishing crimes. I respect our police, judges, and so on, but punishing crime cannot be what we do.
• One of the most consistent themes was a highly structured day, with organized transitions between activities, and play that hides teaching instead of excessive downtime. I think we do this well, but it’s a continual effort to do it better. I saw some great examples of how to push the envelope on structuring the physical space to make it more conducive to activity participation (while still being ruggedized for kids who destroy property!).
• Speaking of the physical space, one small but great idea I saw was to use one’s own body as the visual analog scale for frustration or anger (that is, a very calm level might be anger at one’s feet or ankles, a moderate level at their belly button, a high level a their shoulders). We’ve all heard someone say, “I’ve had it up to here with you!” Beyond all the great things that just systematically quantifying anger does, using the body as a scale is great because it is ever present. And I personally also love the idea of developing a confirmatory code language with our kids that fosters our mutual goals. They can say, “I’m at my waist,” and their meaning is perfectly clear to us, to their loved ones, and to and each other but opaque to people who don’t need to know. As if that were not enough, we have been working on using the Soles of the Feet mindfulness approach, researched specifically for teaching anger management to people with cognitive deficits. It seems to fit perfectly, and between the two techniques, we could really teach our kids to walk on water!
• I am sympathetic to the IT guys who are concerned about data security and respect HIPAA, but I really think we’ve got to move farther and faster to use solutions like Skype and FaceTime to not only connect kids in residential care with their family (which happens routinely) but also to do much more parent training, irrespective of distance, and for the kids where true family psychotherapy is possible, that as well needs to happen whenever it is clinically indicated, with distance as no excuse.
• I’ve heard about a couple of models of aftercare that I want to explore farther. We deal with children who come from very far away, and we’ve met before with some innovators in distance aftercare, but one of the simple ones I really like is a hotline system where kids who are discharged have a lifeline back to that one staff with whom they really formed a bond (our kids have this staff formally assigned as their “mentor”).

I learned a lot of interesting things during the second half of the conference, which focused more on program design and providing high quality services to all youth in residential care.

So far, I really like AACRC. I’m definitely thinking about getting more involved, and I would like to see if I can’t present at next year’s conference.

This is an historical post from an earlier blog, Adopted Son of the Autism Family, which I had before this current blog. It is re-posted without modification (other than this introductory sentence).

The concept of investing is one that is pretty readily accessible to us. If you save $100 towards retirement when you’re 30, and you invest, it will be worth far, far more than $100 you invest when you’re 60. We prize early intervention for children with autism not only because they make radical gains when we provide intensive behavioral therapy at a young age, but because, if we change the teaching so they may learn (to paraphrase Lovaas), we can get them to a place where they can learn in traditional ways. That’s huge – for many of these kids, thirteen years of special education will not only be costly, but it will not produce great outcomes (this is not a dig against special education – it is a vital component of education, and a massive improvement over what has been done in the past – but any special educator would prefer their kids in mainstream classes if they could learn and function effectively there). In contrast, with EIBI, they can access 13 years of mainstream education, which will prepare them for college, professions, hobbies, and all kinds of other pursuits. So, that early investment has a big payoff.

Empowering parents pays dividends, too. Think about this. Parents who have a child with autism who have additional children have a one in four chance of subsequent sons having autism, and one in eleven for subsequent daughters. Just in my practice I’ve met many families with two kids on the spectrum, and even some with triplets, all with ASD. So in that latter case, obviously, tools like Pivotal Response Training or ImPACT (the video below is a GrandRounds presentation that Dr. Brooke Ingersoll of Michigan State University, who developed ImPACT, did for us) pay dividends, because if we can do parent training for a parent with three young children that addresses autism-related issues, training the parent once has a threefold effect.

But it doesn’t stop there. PRT and ImPACT are great tools, that produce evidence based gains for kids and families, but they clearly do not take the place of EIBI or other intensive behavior analytic therapies for most kids with autism. That’s why, while we provide parent training interventions, they are primarily used as a stopgap to getting children into EIBI. Once kids are in EIBI, parent training doesn’t end. Every time we are able to produce a skill and show sufficient generalization so that it occurs for multiple tutors on multiple days, we want parents to know what those skills are and when/how they can be elicited. We love it when parents take these lists home and memorize them – “if my daughter can do that for you, then she’s going to do it for me, and her mother, and her teacher!” If parents are struggling to elicit the same skills we can get in the clinic, we provide additional training, using one-way mirrors, our bug-in-the-ear system, and anything else necessary to transfer the ability to demonstrate the skill to mom and dad. When we do get kids listening, talking, engaging in gestural communication, socializing, and playing, via EIBI, we start immediately thinking about things like getting those children into structured physical activity, like team sports, martial arts, yoga, or theatre. We’re also thinking, right away, about helping them make and keep friends. How do we do that? We empower parents.

When I do psychotherapy, I often tell patients that I meet with them for an hour a week, and this leaves 167 hours a week when I’m not meeting with them. If I can’t teach them something they can use in those other 167 hours, therapy will not be that impactful. Even with the 10-40 hours per week of intensive therapies, there are still many waking hours outside of therapy. So, the first way that empowering parents is that it massively extends the range of therapy efficacy.

There is a second way that empowering parents pays dividends. As a clinician, I do a lot of battle with and advocating in front of insurance companies, community mental health agencies, the state, and to some extent, the federal government and nationally influential bodies, to try to fight for access to care. I have a little impact – people respect my title and my education, and the number of children with autism I serve (although I’m very early in my career, and others are far more experienced than I am!). But my voice is not impactful in those spheres like parent voices are. They will listen to me politely, and then ignore me. They may be rude to you, but they know they ignore you at their peril. Your voice matters. So, the second way that empowering parents pays dividends is that the blend of your passion and voice with our knowledge and skills is the ultimate advocacy weapon to demand the things we need to help people with autism thrive.

The mission I set for my Center is: The Center for Autism, through formal clinical services, informal support programming, research, and community advocacy, empowers families and transforms the community so that people with autism may thrive. These are just two ways that empowering parents is central to our mission. Clinicians, how are you empowering parents? Parents, how can we lift you up?