Short exchange with Dr. Richard Solomon

Dr. Rick,
A few days ago I was reviewing a web presentation on attachment. Nothing new but a nice refresher. This morning I was reviewing a comprehensive assessment on a child diagnosed with PDD NOS. I was also thinking about some thoughts a co-worker had recently shared, about co-occurring dd and cmh disabilities and it struck me that the diagnosis of autism or something in the spectrum almost requires an attachment issue. I also thought about the LOVAAS approach and autism treatment in the clinical or community setting with non family members who sometimes change frequently. Where there has been some corroboration of positive outcomes with LOVAAS in IQ, those positive outcomes have not generally included behavior. The best overall outcomes must include family participation and even LOVAAS/ABA has now acknowledged the importance of joint attention. Yesterday I also read an article about the longing that many if not most children in the spectrum have, in spite of inappropriate or ineffectual attempts, for relationships. (Hope that wasn't too long of a segue.)
If most children with autism also have attachment issues, is center based or even community based treatment ultimately counter productive for the overall and long term benefit of the child and family? From a mental health perspective you would NEVER prescribe a child with an attachment disorder, especially a young one, with 30, 20, or even 10 hours per week in a center or community setting with strangers and without a family or caregiver present. That would be almost unfathomable.
Your thoughts, please?
Pete

Hi Pete,I fully agree. Drilling a young child 30-40 hours per week is developmentally inappropriate and can interfere with multiple developmental processes including attachment, affect, initiation, and autonomy. ABA is good for cognitive gains but depends on naturalistic settings for generalization and attainment of true social abilities. The fundamental relationship in ABA type interventions is: 'Do this. Good job' which is a very impoverished form of relationship. The adult leads. Child led interventions promote affect, initiation and autonomy--three very high values for me. Joint attention is just the beginning. I'm afraid we've let the tail wag the dog. By using empirical approaches only without a respect for what we know to be developmentally necessary, we've been able to teach discrete skills at the cost of developmental integrity. You can quote me on this. Hope this helps.Take care,
Rick
Richard Solomon
MDMedical Director
Ann Arbor Center for Developmentaland Behavioral Pediatrics

Added note from Pete: This does not mean that children with Autism have an attachment disorder. Children with Autism generally do develop strong attachments: however it is often an irregular and sometimes difficult attachment. The developmental needs of the child as well as the relationship and what is called "joint attention" are central to the needs of the child and family.

Why spend additional time and money on planning if it takes away from service or project hours?

Imagine you were going to Mars. (There is some current debate in the United States about a new goal for the space program, to go to Mars and perhaps place a permanent settlement there.)Now imagine you are one of the potential astronauts. You are in a first stage promotional meeting and the director of NASA says: “we’re not going to spend a lot of time planning; but we’ll make it up with close contact during the trip. This is pretty big so we won’t have time for people to review and talk about all of the components. Don’t worry though; we have some great people working on this. Some of the traditional experts for this sort of thing may not be involved; but, that’s ok, we’re sure we won’t need them. We’re pretty sure it will all fit together and there won’t be any negative consequences. This is exciting. It’s going to be great!”Now the director looks at all the astronauts and asks: “So who will be the first to go to Mars?” Would you volunteer?In the case of a trip to Mars, hopefully NASA would not need to make such a choice, but in other situations this choice is presented. Most of the time it is a red herring. A false argument. More treatment does not always mean better outcomes and at a certain point, it never means better outcomes. If though, there really had to be a choice, I would always choose thorough (not over) planning, even if it meant just a little less in the way of services or project time.

The Quest for Quality, is it still important in an upside down economy and chaotic society?

Life, plus economic worries, time constraints, conflicting information and the pull of multiple demands can certainly cause anxiety, adding a child with autism or behavioral problems can seem almost impossibly and absolutely overwhelming.
There is an old adage that goes something like: 'when you're up to your neck in alligators it is difficult to remember that your original intention was to drain the swamp.' I like this adage because draining the swamp would take care of the problem with the alligators and a whole bunch of other potentially serious but not as seemingly urgent problems, such as mosquitoes.
That's sometimes how it is with children's treatment. The immediate relief of your stress and more treatment seems to be the best cure for what ails you and our child. Unfortunately this is not always the case. The right intervention is always more important than the most intervention. Years ago my wife and I owned a Ford Escort. All in all it was a good car. We kept having an electrical problem though and kept having to take it back to the dealer. After many trips, a mechanic discovered that we kept a spare set of keys in the ash tray. (Seemed logical to us.) Those keys would move around as the car was moving and eventually would make a connection and cause a short. Once the keys were removed, we had no more electrical problems with the car.
When you are looking for the right treatment for your child, more is rarely better, especially when it is in a contrived environment or primarily with the therapist. Remember to look for quality above quantity.

Meaningful Functional Outcomes and Parental Involvement

As many know, one of the problems with the SIB-R is how much it lends itself to malingering. Sometimes this malingering comes from coaching by the provider and other times it is just a parent's rationalization due to a feeling of desperation. This desperation comes from a number of sources, sometimes it is out of a hope that something will be better for their child and sometimes it comes from the need to have someone watch their child and their fear that there is no one except someone from an agency who will watch their child. Often times they have given up on the possibility that their young child with a disability might be accepted by a typical day care or that their older child with a disability might be able to be included in typical programs. While there are always going to be some children who will need specialized supports in order to participate in some type of child care or other activities including family based, for the majority of children we work with there is real hope for significant improvement. Unfortunately there are two primary obstacles, with numerous ancillary obstacles.#1 Meaningful Functional Outcomes.If we do not start with the end in mind, we will not know where we want to go. If the end is not meaningful to the parent, the parent will not feel vested and involved and will be less willing to participate. If the path or route taken towards the end does not involve the parent, let alone make sense to the parent, then the parent will disengage further. On the other hand, if the outcome is meaningful to the parent and it's practical functionality is obvious to the parent (because it originated from the parent), the parent will be more likely to be invested in the intervention especially when the parent has been taught both the essentiality of their involvement and been assured that they will be given the requisite skills and supports.#2 Parent involvement. It is no wonder that SIB-R Maladaptive scores often get worse while the child is making progress in the center or even community with the therapist or tech when there is little or no parental involvement in the actual intervention for the child. There are three primary reason for parental involvement in the actual intervention with the child. 1. It provides more and more consistent intervention for the child. 2. It provides better outcomes for the child. and 3. The parents perception of their ability to help the child, handle the child during difficult times, interact and communicate with the child are heightened. This last issue has become so important in the research that for early intervention there has even been developed The Early Intervention Parenting Self-Efficacy Scale (EIPSES) which you can find on my page at: http://www.collaboration.me.uk/q.phpWhen used correctly, the SIB-R Maladaptive score is actually reflective of two things, one is the actual behavior of the child and the other is the parent's perception of that behavior, which includes their perception of their personal self-efficacy in relation to those behaviors.Of course and as is well known, any research about the efficacy of intervention or even any kind of extended additional hours clearly demonstrates that parental involvement is essential.

Is more always better?

As in so many areas of life, there is no direct causative correlation between the amount of money spent and quality of services, progress, or positive outcomes for the individual. There are times when the right care is more expensive and there are times when the right care, the best care or intervention for the individual is less expensive. Simply throwing money at a problem is never a good idea. Sometimes as with some of the research cited below, it can actually produce worse outcomes. For example in the case of Medicare expenditures:
What's Enough, What's Too Much?
“Most important, the second of the two articles by Fisher and colleagues (2) demonstrates that patients in high-spending regions had no better survival (if anything, slightly worse) than those in lower-spending regions. Separate analyses of a sample of all Medicare beneficiaries further showed no gains in overall patient mortality, functional status, or patient satisfaction. “
http://www.annals.org/cgi/content/full/138/4/348
and
Relationship Between Regional Per Capita Medicare Expenditures and Patient Perceptions of Quality of Care
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2438036

Using our best Critical Thinking skills we need to learn from the best research and provide what works, which is not always and quite often not, what is most expensive.
Learning from Evidence in a Complex World
John D. Sterman, PhD
The author is with the MIT Sloan School of Management, Cambridge, Mass.
Correspondence: Requests for reprints should be sent to John Sterman, MIT Sloan School of Management, 30 Wadsworth Street, Room E53-351, Cambridge Massachusetts 02142 (e-mail: jsterman@mit.edu ).
"Policies to promote public health and welfare often fail or worsen the problems they are intended to solve. Evidence-based learning should prevent such policy resistance, but learning in complex systems is often weak and slow. Complexity hinders our ability to discover the delayed and distal impacts of interventions, generating unintended "side effects." Yet learning often fails even when strong evidence is available: common mental models lead to erroneous but self-confirming inferences, allowing harmful beliefs and behaviors to persist and undermining implementation of beneficial policies.
Here I show how systems thinking and simulation modeling can help expand the boundaries of our mental models, enhance our ability to generate and learn from evidence, and catalyze effective change in public health and beyond".
http://www.ajph.org/cgi/content/abstract/96/3/505
There is a great deal of research about what works best for children with developmental disabilities and mental health concerns. Quite often we spend a great deal of money on substandard treatment which do not provide the best outcomes for the child. In some situations the key is to spend a little more money for the right treatment, which frequently provides better results at a lower financial cost over the life of the child.
According to Leonard Bickman of Vanderbilt University, More is Not Always Better.
http://books.google.com/books?hl=en&lr=&id=gLWnmVbKdLwC&oi=fnd&pg=PA395&dq=cost+and+quality+of+mental+health+care&ots=0WR4Frur43&sig=gw2MTOx_5AYDOAFMPg5JLcBJNwM

It Takes a Family, Plus a Village

For thousands of years, people lived in extended families. In some cultures and in some parts of the world today you will still find many people living in an extended family system. When issues of hardship, disability or behavior outside of the norm, arise, the extended family is often involved. This extended family is often involved with raising all children within the family group and caring for the needy and elderly.
When you hear the phrase, “it takes a village” there is some truth and some inaccuracy because the village, often was the family.
In many parts of the world today, the extended family is not as close geographically or emotionally as it once was. The expectation and/or provision of support is significantly diminished. Grandparents, cousins, aunts and uncles often live in distant communities, regions, and sometimes even countries.
Raising children has often been challenging and the influence and assistance of both immediate and extended family crucial. Now with that assistance and influence less available in many societies and in many parts of the world, and unfortunately with more broken and sometimes even noxious families living in increased isolation, the challenge to raise healthy productive children is even greater. (Electronic communication through television, radio, the internet, texting and whatever else will be developed in the near future is not a poor substitute for real face to face dialogue; it is no substitute at all. While it may be an effective way to communicate information; it does not replace the more essential purposes of sitting down together, talking walks together, working together, being together, fishing, knitting, listening together and just talking.) Because it still takes a family plus a village, the composition of that village is an essential responsibility of the parents which if abdicated, will be decided by the children and society around them.
I grew up in a partial extended family situation with a grandmother either living with us or next door for most of my life and frequent contact with a couple of aunts and uncles and occasional contact with other aunts, uncles and cousins. These relationships provided me with an enriched childhood; however there was much more. I owe a great deal to scout and church leaders, close family friends, and others who were a part of my childhood. Though I am in my 50’s and have moved a number of times, I still have a close relationship with many of these individuals who are still living and their families. These people and new families are all a part of my village. My children did not live as close to extended family as I did but received the wonderful benefit of rich relationships though leaders, teachers and close friends with mostly high standards. With three of my four children out of the home, two of them especially continue to maintain strong relationships with both extended family and the villages that were a part of their childhood.
Here is my point, the family, the extended family and the village are the most important and constant influences in the life of a child. In almost all situations interventions that include those who have the most contact and influence are more powerful than interventions that only or even primarily include only the child and a therapist who will have a passing influence on and involvement with the child. Even if the intervention is intensive, if the parents and even other family members and perhaps even the village are not a part of the process and acting as co-therapist, then the long term positive impact will almost always be dramatically reduced, negligible, or possibly even non existent.
I know this from research and extended personal experience as a counselor/therapist. This does not necessarily mean that a family with a child needing intervention/treatment is dysfunctional, inept, or in any way inappropriate. Many excellent parents have children with difficulties and who require specialized intervention. Intervention that can be provided by those who have the most influence and contact with the child (family and other care providers) through consultation, collaboration and coaching, from an appropriately skillful therapist with occasional or intermittent direct intervention from the therapist has the most and sometimes only long term positive impact on the child.

Strength Based

The program will be strength based. While this does not mean that the program ignores deficits or problems, the primary focus will be strengths. Safety should always come first; however, is the long term and clear emphasis on strengths and increasing appropriate behavior?

Best Practice/Evidence Based Practice

Providing a best practice, research documented and peer verified approach that matches the disability, disorder, issue, and individual situation for your child i.e. PLAY and ABA. Does the provider provide a well researched, developmentally appropriate, and best practice intervention that is known to provide best outcomes for a child of (age of your child) with (disability, condition, or diagnosis of your child)? They should be able to tell you exactly what intervention they are providing and provide you with the research to back it up. If they can not, they should have a very good explanation of why they can not. Does the therapist have the qualifications/training to provide this particular intervention?

Parent and other Caregiver involvement in therapy

When therapy is integrated into yours and the child's typical routines, more really is better. Are you an integral part of the therapy, are you being taught things that you can do to support therapy and is there follow-up to see how well you are doing and what you might do differently to adjust for better results for your child? Are you listened to as a partner and an expert on your child? Does therapy support and promote inclusion in typical healthy productive routines that your child's peers are involved with i.e. 4-H, scouting, school activities, church activities etc.?

Additional therapies are being provided for the child.

I.E. Speech, Physical Therapy, Occupational Therapy, or other type of specialist. Is there a global approach to your child? This does not mean that the other therapists have to be providing direct therapy. Sometimes this can be only for consultation and evaluation. This is not essential for every child but the need should be explored through the Functional Analysis or Behavior. Is this occurring or has it been thoroughly explored?

Collaboration with other therapies

Is there both communication and an integration or support of services being provided by other professionals. Does the therapist working with your child, collaborate with and integrate suggestions provided by other therapists?

Progress

Evidence that the child is making significant progress with the existing therapies. (May include maintenance for certain degenerative disorders or syndromes.) Can you easily recognize significant achievements made by your child, that were written as specific goals or objectives on your child's plan? Can the therapist show you data that is easily understood and that relates directly to your child's objectives?

Plan quality: MBO

Quality and appropriate (including developmentally), Measurable Behavioral Objectives. Does your child's plan contain objectives that are so clear and concise that you know exactly what your child is to do and when your child is to do it? Do you also clearly understand when your child will have achieved this objective?

Plan quality: FO

Quality and appropriate (including developmentally), Functional Outcomes.
Are the outcomes and goals on your child's plan something that s/he will be able to use as a part of his or her normal routine? Is this a skill that you would teach a typically developing child? Is s/he learning something that s/he could possibly use if s/he were living on his or her own?

Crucial Time Periods

For some interventions and disabilities this would include the first three years of life; however if Best Practice is provided, can often extend through age 8 or 9. This does not mean that treatment is not important for older children, it is. It does mean that early intervention is crucial if at all possible. This is partially because of what we know about early brain development (towards bottom of page). Treatment for some things, i.e. attachment and hearing loss are especially critical in the first few months of life.Some other crucial times can be times of transition, including between schools, moving, family transitions, puberty etc.Is therapy being provided at a crucial time period and if not, does the therapist acknowledge and understand the importance of these periods and is s/he prepared with a transition plan for these periods?

Medication

Medication is not needed for most children. If it is being prescribed, a children’s psychiatrist is recommenced if at all possible. If there is medication is there close collaboration between the therapist and the physician?

FBA

Existence of a functional behavioral analysis. (Also called a functional analysis of behavior.) (Must include, environment, setting events, sleep, diet, medical, communication, etc.) Was a functional analysis of behavior conducted, especially for a child three years or older?

Relationships

Does your child have a positive caring relationship with the therapist or do you believe that they will be able to develop one. (Knowing that the therapist personally cares about the individual is important for any therapy.) Do you have good rapport with the therapist? Does therapy build positive relationships?

Order of intervention

When the issues are behavioral and/or social/emotional/mental health, your child's therapist should be concerned with relationships and prevention, the environment, setting events, interactions and skill development, and individually treating the child, in that basic order with the exception of safety and immediate health concerns which must always be addressed first. There may be some slight variations to this order. Click here on Child Behavior and go towards the middle of the page for additional information.

Family Centered

The family is an integral partner in treatment and the parents are experts on their own child. With rare exceptions, such as child abuse and neglect, the values and culture of the family are honored and respected by the therapist. Individuals and families have beliefs in how change takes place and what they believe will be effective. The therapist is there short term, the extended family and support system are almost always there much longer than the therapist. The therapist needs to understand this, take it into account and use the strengths and resorces of the family system to help the family and child.