Saturday, February 19, 2011

For Physicians and Educators: 10 Things You Can Do To Help Families With Children Affected By Autism or Developmental Delays

A few days ago I read a thoughtful article here

). I like that Dr Som spoke up to bridge the topic, even though I don’t necessarily agree with everything said. The things I do agree with I kept. And are noted in a pretty blue as to give credit :)…. No sense recreating the wheel !! :) My comments are in black italic. Anyway, I wanted to do my own version, maybe to give to my pediatrician, not because I don’t like my pediatrician cause I do. I find him very open minded, easy to talk too, and he is not hard to look at either( you know… easy on the eyes ladies!)!! That said, as a mom of two children Dx on the spectrum and a professional in the field, I definitely have something to say on this topic…some of my thoughts applaud what Dr Som says, but some don’t. That’s ok because we as parents always need options to make informed decisions for our own children!! I know I did. I needed options for every step of the journey I made with my two children. They were both very different yet shared those core issues of Autism. So we, as parents don’t always agree, except when it comes to being able to make an informed decision for our own children and family! In the spirit of that, here is my addendum to-

For Physicians and Educators: 10 Things You Can Do To Help Families With Children Affected By Autism or Developmental Delays

The 10 things pediatricians and family practice physicians can do to help families affected by autism or other developmental delays in their in their practices:

1. Understand the ABCs of behavior

• A= Antecedent = What happened immediately before the behavior?

• B= Behavior = A description of the behavior (not "he got angry")

• C= Consequences = How did the parent or teacher respond.

According to the American Academy of Pediatrics (AAP) policy statement on discipline, parents are more likely to use aversive techniques like spanking when they are angry or irritable, depressed, fatigued, or stressed.Although I cannot speak for all the caregivers of developmentally delayed children, one of these adjectives describes me all the time. The policy statement also mentions that spanking can be a positive reinforcer for children much like my firm "stop it" or sighing were for David. The policy does not address developmentally delayed or autistic children. The AAP policy statement on the maltreatment of children with disabilities discusses the issue, but I hope most pediatricians address behavior management techniques before there is concern about maltreatment.

Ok lets face it, you know as our doctor/working with our child on the spectrum, Autism shakes us to our core!

Understanding behaviors are indeed crucial to understanding what is going on with our children. But it is not all about shaping their behaviors…we as parents want to shape our children’s minds! Not just shape their minds to behave a certain way, but to truly think with the ability of reciprocal perpective taking in their decisions. We do appreciate some techniques from Behavioral modification, as they are shown effective in various degrees with addictions for adults or for our kids just trying to get them to brush their teeth with a sticker chart, etc. They show effectiveness with some children with Autism by teaching them a skill.  I knew Behavioral modification before I knew Autism. With my first child, I thought I understood how ABA would help him. It did help him, according to most of you. But for me, he knew skills, and could talk for his needs, but socially and mindfully there were huge gaps!! But I was told how great he looked. He was recovered because he got A’s on his report card. Or because he could simply talk. Yet, He did not understand friendship because he could not take on another person’s perspective. I learned a valuable lesson that day for my younger son who was also Diagnosed with Autism…and for my older son to know how to still help him and not give up thinking it was as good as it gets. I stopped looking at Autism as a behavioral issue and started looking at our children as we would any typical child? Yes that’s right, pull out the what to expect the first year-5 years books and apply that information to our children too!! Can we give them a chance for a do over in their development that they missed the first time because of the assault on their neurology? As a Mom, I wanted that for my own children!! Not to change who he or she is, but to remove those obstacles because of those basic missed milestones that is at the core of our kids emotional foundation. Believe it can happen with me and don’t just try and get our kids to act a certain way. We want them to know why and feel competent in their social world! We want that to be the first line of defense so that we build upon a strong foundation so that they can resume on their developmental pathway!

We know our kids are missing vital developmental milestones so throwing them behavioral techniques are short term compensations that do little to help them develop theory of mind. That is why over and over again I hear “he does great academically but he can’t make a friend” The reason for this is because they do not have the foundational social and perspective skills that emerge in typical children as early as 6 months old. Think of the crisis of children entering adulthood on the spectrum. They can read, they can write, they can talk, but they do not have theory of mind for perspective, for intersubjectivity. What I’m proclaiming from the rooftop is, we now know so much more then we knew before concerning Autism.  We want our children to think *on their feet*, to be mindful, and those actions, is where theory of mind emerge. And yes, it is possible! Raise the bar with me. RDI follows the traditional guide apprentice role comparable to how we interact with our typical children. We do not reinforce poor behavior either but at the same time reinforce that both child and mom are both going through a thought process during any interaction. With my 2nd child Diagnosed on the spectrum, after a short time of ABA in which we were making no progress, switching to RDI not only took care of his cognitive development, his ability to attain theory of mind, but also any behaviors that he was presenting. Sometimes Behavioral Modification is necessary for short term compensations, and has its place… but stop acting like it will give our children theory of mind!

2. ASK and LISTEN.

Many families assume that routine check ups for a child with autism are for vaccinations and other non-mental or behavioral health issues. Many families have seen or are actively seeing a developmental pediatrician or psychiatrist. Ask if these professionals are accessible and helpful when it comes to the very practical issue of daily discipline. If concerns are not being addressed, send your patients elsewhere. Sometimes just talking helps families find focus and prioritize what they juggle everyday. Most of all understand that some parents will now have trust issues with you. After all, you may have been the same doctor who told them their child may need to be institutionalized or the educator that says that they don’t expect much from our child. Please recognize parents as an effective team member who has more vested in this issue, their child. They spent sleepless nights reading, on the internet, etc. Listen to what they have to say.

3. Know where to send your patients.

Do you know the specific schools or programs in your community that excel for children with cerebral palsy, developmental delays, or autism? Which therapies do you suggest and for what reason?

Not all therapists are equally skilled, which is especially true if the child is seeing a therapist via a state early intervention program. If you reflexively send special-needs patients to the triad of occupational therapy (OT), physical therapy (PT) and Speech Language therapy (SLP), without determining a child's unique needs, the family's insurance, and what your patient's Special Education Local Area Plan (SELPA) offers, you are not providing a true medical home.

One thing you can do is to enlist the help of parents of special-needs children in your practice. Ask if they would mind if a parent in need contacted them. We wish desperately that a primary care doctor or specialist had done that for us, especially when we first relocated.

This is important because it is easy to fall into the trap of thinking something is effective, but to talk to parents who has been down that road, and then see the outcome, is huge in bridging the gap from what is thought to be effective, to what is truly effective in the long term.

4. Send your patients to a Certified Relationship Development Intervention Consultant who has completed their training with RDI. Also note that each year, these same consultant ( ) must be recertified to show they are on top of the current research on developmental milestones for our children, and what is effective long term. This is the first line of defense for our children. After a RDI program under the direction of a certified consultant is in place in the home, the program can then branch out with mindful coaches as extenders for the family and in to the school if the child is school age. It may be necessary for a behaviorist to collaborate for short term compensation. But that is not always needed. RDI is clinically proven and is an evidence based emerging treatment. It is important to keep up with research on what Autism is to know how to effective help our children long term. Typical development is plan A. We need to stop doing plan B with children on the spectrum and restore their plan A! This reduces the need for always having to react to a new behavior and is a proactive approach.

5. Advocate for insurance reimbursement.

I believe in insurance reform to treat Autism as a developmental and medical condition, not a behavioral condition. I believe that treating the underlying foundational issues of Autism is far more cost effective then trying to alter their behavior from those unaddressed gaps in development. However, I believe in parental choice. If a parent chooses to use an intervention that addresses development compared to behaviors, they should have this choice. I believe it is empowering to help parents help their children. I believe that parents are the most effective therapists for their children. Since Autism is a developmental disorder, a bond of trust is crucial between parent and child. Because of Autism, this emotional trust is crucial and was thwarted because of Autism Once a regulation of this trust is strong, coaches to assist the parent can be brought in as necessary. This places parents as part of the professional team helping their children.

If you want private insurance to help, wait until the child pulls out everybody's hair and becomes a danger to himself or others. Then he can go to the ER while he waits for a bed at a an inpatient psychiatric facility. Obviously, I am not seriously advocating this course, as it is not humane -- or cost effective. Legislation in various states attempts to compel insurers to pay for autism therapies, but loopholes almost universally allow insurers to weasel out of reimbursing for ABA.

After I chuckled at this remark of course, I realized how sad it is that this is indeed what insurance does to us!!  Advocate for addressing the Antecedent of why the child feels incompetent in their social world in the first place.

6. Say NO to drugs as a first line approach.

Say this three times out loud: "No medication should be started without an effective behavior plan. No medication should be started without an effective behavior plan. No medication should be started without an effective behavior plan.

Although the AAP policy statement on the management of children with autism advocates for this approach, (published November 1, 2007; reaffirmed December 1, 2010) the AAP policy statement does not mention discipline strategies in any detail nor does it broach the subject of child maltreatment. It spends one paragraph on the importance of a behavior plan for an a child with "challenging behaviors," and then three and half pages on drugs, most of which are not well studied. There is a one page table that suggests specific classes of drugs for specific problems. Why isn't there a comparable table illustrating behavioral solutions or approaches to common problem behaviors? The policy statement assumes that you will be able to easily send the child to a specialist for a functional behavior analysis while you get ready to write the prescription.

Imagine if pediatricians or family practice physicians handled asthma this way. The child would arrive at the office coughing and dyspneic [short of breath]. We would administer albuterol, oxygen and/or steroids while his mother sits next to him smoking a pack of cigarettes.

7. Help your patients' parents develop meaningful familial supports before crisis.

Of course an effective behavior plan requires not only an experienced professional for design but a motivated caretaker to implement. Personally, I can think of a handful of occasions when I would have benefited from a therapist in my home for intense short periods -- for example, when toilet training.

Here is one example: I write lots of prescriptions for diapers and incontinence undergarments for autistic children older than five, so that the parents can be compensated for the cost of these items. Many, if not most, children with autism can be toilet trained -- if their parents or caregivers have help from experienced professionals in this area. However, in my state, Medicaid pays for all the diapers you want but will not pay for any ABA or in-home behavior management.

This is where RDI again, looks at the why of the behavior and targets the missing milestones instead of just the behaviors. RDI targets behaviors too, which is why I agree with a behavior plans in context to the high goal of removing the obstacle through theory of mind. By addressing cognitive development, RDI addresses behaviors. Behavioral techniques that foster mindfulness are included within RDI.

8. Stop making parents the only "experts" on their child.

We do not diagnose a child with muscular dystrophy, brain cancer, or blindness, and then tell her parents that they are the real experts, but you will be available for consultation. We do not reassure parents of a child with these diagnoses that if things get too bad, they can go to the ER or call one of the triad: OT/PT/Speech for help. We should not use this approach for parents of children with an autism diagnosis.

How can we go from institutionalizing children with autism and blaming the disorder on their parents -- just 40 years ago -- to making parents the experts on autism treatments?

I like the idea of bridging this gap by "hospitalizing" the child and bringing the behaviorist/Coach to the house. I dream big. In the meantime, YouTube has great videos of families using RDI (sample search) or ABA (sample search). Autism Speaks now has its own channel.

It is sad that no physician has ever suggested to us -- fellow physicians -- that we could use resources such as online videos as a way for us to learn about therapies. Describing behavior therapies is like writing an essay about how to Salsa. Encourage families to find a way to observe it in action. Understanding each intervention and the purpose for that intervention helps parents make informed decisions!

9. Advocate for better training for folks on the front line.

Who are those on the front line? Social workers, early intervention educators, caseworkers from your state's developmental and /or cognitive service provider, special education teachers, and therapists -- those are the front-line folks you will meet. All need ongoing training -- in advances in remediation, and advances in what is known about education and behavior management for people with developmental delays. With social media and telemedicine there is no reason that individuals well-versed in behavior management cannot help children even in the most remote areas.

I know a marvelous occupational therapist who worked full time with autistic children. She cut back her hours because of fatigue. She wants so much to help train other people, but there is no way for her to make a living that way. Sometimes schools, counties, insurance companies, and large free standing children's hospitals do not want to pay for consultation with a behavior specialist, or allow their employees to take time away from client duties to get better trained. In the big picture, it would not only save money it would save lives.

10. Stop corporal punishment in schools and in homes.

Human Rights Watch reported that children with disabilities including those with autism were more likely to endure corporal punishment in schools than their typical peers. Nobody would ever know if I hit my son on a regular basis. Although he is verbal, he would never be able to articulate abuse to anyone. There are limited studies on what parents do in the home for discipline. Most parents understand that their children are fragile and different. However, they lead incredibly stressful lives with very limited respite options. They need techniques to combat aggressive behavior effectively and safely.

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