Parent Question: How do I know when to stop ABA therapy?

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ABA is not a curriculum, it’s a way of teaching, so it really depends on what you are focusing on for your child. It’s important to periodically review your Quality of Life vision and goals, as well as know the difference between working around autism deficits vs. addressing root issues for problem behaviors and cognitive challenges. If you know how to measure progress (i.e. independent spontaneous flexible communication, sharing with others, problem-solving) then you can have a good reference point for knowing when to stop. It all depends on what your goals are at the current level of your child’s development.

I would not recommend using what insurance will cover as the sole factor in deciding on what treatment to use – it’s a bit like saying “My child needs glasses but the state will pay for hearing aids, so I’ll just give my kid hearing aids”. People don’t equate that with behavioral/educational approaches, but it really does matter HOW the child is being taught, not just WHAT he is being taught. There is no solid right/wrong answer here, it’s something you can learn to evaluate for yourself if you know what questions to ask yourself.

That being said, there are some big indicators it would be a good idea to stop ABA and explore other educational approaches:

1. Your child is becoming avoidant of people, demonstrates new behaviors like self-injury or aggression (or such behaviors significantly increase upon initiating ABA), or loses motivation to initiate on his own. These can be unfortunate side effects of a child being treated at an inappropriate developmental level or becoming depressed or stressed as a result of the invasive nature of behavioral programming.

2. You are spending a significant amount of money on a program and seeing very little change or progress.

3. Therapists report gains in skills but you don’t see improvement in quality of life in your home life, and you are not receiving training on what you can do when you are with your child (leaving you dependent on therapists to do the work).

4. Your child is not progressing and therapists are unaware of neurodevelopmental foundations that may be impacting learning, including poor self-other awareness, limited ability to integrate a whole experience (i.e. the child perceives things in ‘parts’ and does not create meaning from experience), or lack of understanding of how to use tools and impact the environment in a meaningful way.

5. Your child becomes prompt dependent.

6. Activities that previously were enjoyable get used as rewards and subsequently become demotivating for the child, resulting in eradicating the child’s natural interests.

7. Your child’s therapists talk in front of him like he isn’t there, use intrusive methods to gain attention such as grabbing his face and forcing eye contact, and in general seem not to see him as a person first. All ‘behaviors’ are viewed through a lens of judgment. Lack of initiation or performance is viewed as willful, disobedient or manipulative. Children don’t thrive in this kind of environment, and while many therapists are caring and well-meaning, currently there is a culture of judgment and manipulation in behavioral autism treatment, stemming from attitudes passed down from trainer to trainee (often college students) over the past few decades. Attitudes are changing, but there is still a strong culture in behaviorism of judgment and manipulation.

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Parent Question: What to do for a 15-month old who has just been diagnosed with Autism?

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1. Learn about sensorimotor and reflex development – you can implement this with an infant (and people of all ages). Programs that are helpful for this are HANDLE and MNRI.

2. Educate yourself on common food sensitivities people with autism have – many parents see improvements when they remove things like gluten and casein, and some children require more extensive special diets. Talk About Curing Autism provides information on this area.

3. Learn about co-regulation. This is SO important and most practitioners and providers are not aware of it. People with autism have difficulty with co-regulation, which requires efficient processing of nonverbal and verbal information, as well as the child being able to make sense of dynamic social interactions. The only program I am aware of that specifically guides parents step-by-step on how to achieve co-regulation is the Relationship Development Intervention (RDI) program. Co-regulation is NOT behaviorism, and it is not following the child’s lead or entertaining the child. It is a foundational ability that is necessary for long-term independent functioning and ability to learn in group settings.

4. Be very mindful of the child’s stress level and caregiver’s mental/emotional state. When introducing therapies, parents will know if it is right or if it is too invasive or intensive. Trust your gut, even if it goes against what the medical community is recommending. There is no approach that addresses all 4 levels of intervention simultaneously. What parents can learn to do is to integrate (not the same as throwing everything at the wall and hoping something sticks!) It is possible to implement very effective approaches to facilitate the child’s development. (Note: in 2 weeks I will be hosting a telesummit of autism experts, and providing parents information to help organize the info and know the next steps for their particular child – the website is www.autismtelesummit.com)

5. Take recommendations with a grain of salt. Ask any provider who gives recommendations what their background is. Are they trained primarily in one modality, or do they have practical real-life experience in various therapies (not just understanding in theory)?

My disclaimer: I am trained in ABA, Miller Method, and a variety of other relational approaches, and certified in Relationship Development Intervention (RDI) and HANDLE. Currently in certification for Masgutova Neurosensorimotor Reflex Integration (MNRI).

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Simple Autism Test For Infants

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Take this information with a grain of salt – not EVERY baby who has this problem with head control will develop autism, but a very high % of kids who later develop autism show this sign. This is a reflex relating to head and neck control. FYI: programs which address this kind of basic neurological function include HANDLE and MNRI.

 

Simple Autism Test For Infants

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Which Program Is Right For Your Family?

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One of the most frequent challenges in autism treatment that parents report is making sense out of all the options available. There is not one therapy program that addresses ALL the needs of every child – after all, human beings are complex and multidimensional and we cannot be reduced down to a sum of our parts.

For a comprehensive and truly individualized program, it is necessary to look at the interdependence of the various systems involved in child development and the unique presentation of a particular individual’s developmental challenges. In addition, a child is part of a larger family system, and the overall quality of life of the entire family should be taken into consideration when deciding on treatment options.

Here are questions parents can ask when evaluating a particular approach or therapy for their child:

1. What is our vision as a family? What do we want to experience on a daily basis as a family and in our relationships with one another (siblings included)?

2. What values are important to each parent? This is crucial because if your values clash with the expectations of a particular approach, you will likely run into resistance in implementation or will feel unfulfilled in some aspect of your life.

3. Will the approach I am looking at lead to long-term quality of life, or am I looking for a short-term “work-around” for my child’s developmental challenges? It is important to understand the difference between working around autism and attempting to systematically address the developmental processes that are disrupted in autism. (See previous blog post on social referencing for an example of a developmental process disrupted in autism). Short-term improvements in specific areas are helpful in some situations but may not lead to long-term gains in quality of life (think employment, friendships and self-actualization). Children with autism eventually become adults, so it’s important to hold a long view when making treatment decisions.

4. Are we dealing with a crisis that needs immediate attention (such as a child who is severely aggressive or self-injurious, or who has significant sleep issues or medical conditions that affect the whole family)?

5. Am I looking for an approach to get to the root of my child’s cognitive, emotional, social and communicative challenges to the fullest extent possible? Approaches that are developmental and remediation-focused (i.e. working on the areas of weakness in children with autism, as opposed to only teaching to the strengths) aim to remove blocks to the developmental process.

4. What kind of professional support do we need to achieve our vision? What therapy model is the best fit for our goals and  family situation? Do I want to work with a consultant who will educate me about autism and coach me on what I can do for my child in day-to-day interactions? Or do I want to hire a therapist or specialist to work one-on-one with my child for specific areas of intervention?

5. What are my expectations of a particular approach based on what I know about child development, how much practice my child will need to master the goals I have set, and the amount of time and effort I am able and willing to invest in working on those goals? Am I being realistic about my child’s potential progress if I don’t prioritize building developmental foundations? Do I see the importance of developmental foundations?

6. What is our Return on Investment of a particular approach? Will I know what to do with my child without a therapist available, or am I leaving the treatment up to the professionals? Am I learning the tools I need to parent this child for the rest of his or her life? Are we seeing the results we envisioned when we started the program?

These questions are a good place to begin as you explore autism therapies and approaches and think about your specific challenges and goals as a family. For more specific consultation and feedback about your family situation, RDI Program Family Consultants are trained to assist parents in prioritizing their needs for long-term growth and success of their child. (A list of Certified RDI Consultants can be found at www.rdiconnect.com)

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Why Do Children With Autism Wander?

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A new study found that 49% of children with autism wander/elope from safe settings and 62% of families with children who elope were prevented from attending/enjoying activities outside the home due to fear of wandering (Pediatrics, October 2012). Half of parents of children who elope report they were never given advice about elopement from professionals.

Why do children with autism wander? One of the hallmarks of autism is a limited ability to self-regulate using social referencing. Social referencing develops in very young children and is one way that babies and toddlers learn to process the environment. When presented with uncertainty or potential danger, the toddler can look to mom or dad to gain more information and decide what to do next. This is a cognitive process and depends on the ability to recognize uncertainty and process nonverbal communication from the parent. The vast majority of children with autism and Asperger’s Syndrome do not use social referencing (or if they do, very rarely or in a rudimentary way).

A famous experiment of social referencing was done by Joseph Campos, and is shown here:

How can we prevent wandering? In addition to normal precautions such as door and window locks and alarms, fencing and tracking devices (which some children need), it IS possible to teach children with autism how to self-regulate via the parent-child relationship. The RDI Program offers parents a systematic curriculum which aims to restore the emotional feedback communication system between the child with autism and his or her parent. Not only is this ability to use social referencing necessary for safety reasons, but it is also a critical foundation to real-world success in managing stress and adapting to change as well as making and keeping friends (the real kind that don’t require prompting in highly structured therapeutic settings).

Another component to wandering, which may be more of a challenge with some children than others, is the issue of perception of danger. A child who has very poor body organization and awareness of space may have a limited ability to accurately perceive and process danger. Children who often climb to the highest point or literally throw themselves into walls may fit into this category. In this case, it may be necessary to target another layer of functioning in addition to the social-emotional process of social referencing. Programs that address the underlying neurology of sensory processing and body awareness can be very helpful in these cases, such as HANDLE or MNRI. Children who are nonverbal and/or who have limited interaction with objects, who appear oblivious to pain or may have poor perception of depth are more likely to benefit from a combination of RDI and a sensorimotor program.

Consultants for RDI, HANDLE and MNRI can be found at their respective websites. For parents who have children who wander, the National Autism Association offers a “Big Red Safety Toolkit” to families.

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Results from Parent Survey Update #1

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I promised I would share results of the recent autism survey I sent to the twitterverse this week and so far have received dozens of responses. I have to admit I was moved to tears by some of the stories. Many parents reported it took months or years to receive a diagnosis, often waiting for services and referrals to multiple healthcare providers who all said the same thing (“he has autism and there is no cure”), with little sense of support or practical help. Some of you were challenged by misdiagnoses (schizophrenia, ADD/ADHD, ODD) until at a later age (as late as 8 or 9) your child received a diagnosis of Asperger’s or PDD.

Several of you have reported one of your biggest frustrations is the overwhelming amount of therapies available with every professional offering his or her opinion about what the ‘best’ treatment is, often in direct conflict with one another.

For parents of young adults, I was dismayed to read that often many therapies that are available today (some of which were only developed in the last 10 years) were never tried, and currently the outlook for your teenagers and young adults appears pretty grim. The sense of frustration and despair for parents of this age group saddened me. (For what it’s worth, the more current therapies are yielding very good progress in older teens and adults as well as younger children – the information has just not reached the mainstream medical community yet.)

The age range you have reported so far in knowing something was not quite right with your child’s development is between the first week of birth (unconsolable crying) and 4 years of age (some regressing and losing skills and language as late as age 4).  Early signs that something was wrong include being inconsolable, lack of eye contact, sleep dysregulation, no babbling or development of speech, and not responding to his name. For those that regressed at a later age, parents reported it was the loss of speech and language and some motor skills that indicated something was wrong.

As saddened as I was at reading some of your journeys to diagnosis or challenges in handling older children with autism, I was also encouraged. Some of you have reported your children were ‘recovered’ and no longer fit the criteria. At this point, the therapies you attribute to full recovery of your children are RDI, ABA and biomedical.

I will not get into the topic of recovery here, that is for another post – but I am happy to hear that some of your children have responded so well to the path of therapies that were chosen for them. YAY!!

I will continue to update results as more responses come in – if you feel inclined, please feel free to complete the survey yourself here: http://svy.mk/OF41aD

(Note: while this is in no way intended to be a controlled scientific study, I attempted to poll parents from multiple sources, including yahoo! groups that focus on ABA, SonRise, DIR/Floortime, RDI, MNRI as well as Facebook and Twitter. SonRise, HANDLE, MNRI and Miller Method are thus far under-represented in this sample.)

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7 Signs the RDI Program May Be Helpful For Your Child

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daughter holding hands with father

There are many approaches to autism treatment and sometimes it can be overwhelming to decide which approach is right for a particular issue. I believe there are merits to many programs, and it’s just a matter of determining what the priority is for your child and family right now. (Keep in mind any decision about treatment or education is for now, not forever.)

Here are 7 signs that the RDI program may be helpful for your child and your family:

1. You feel like your life revolves around Autism.

2. You are not sure how you are supposed to measure progress in your child’s development and you have not been educated on the difference between developmental processes vs. teaching rote skills. (Note: rote skills don’t take you very far if you don’t have the underlying process developed.)

3. You find yourself doing most of the work to maintain an enjoyable interaction with your child. You feel like you spend a lot of time ‘getting’, ‘directing’, or using entertainment (i.e. tickles) or external motivation (M&M’s anyone?) to get your child to do things for you or to engage with you. (And if your child is a teenager or a young adult, he spends a lot of time on the computer or in solitary repetitive activities away from the family.)

4. Much of the time you feel reactive instead of proactive, and often feel like you are ‘putting out fires’.

5. You can’t take your child to the store because he is too high maintenance, or it’s too stressful for you or for him.

6. You want to make sure your child has the opportunity to develop the necessary communication, problem-solving and social skills necessary to have genuine friends.

7. You are not sure that your child or teen will be prepared to function as independently as possible as an adult. (Or if you are a parent of a young adult, he is still living at home with little motivation and/or no plan to move forward with self-selected life goals.)

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