There is no such thing as a dumb question!

So why do we ask questions?  We ask questions because we want to know the answer… to something that we are trying to understand,  or we want to know the other persons perspective of whom we asked the question in the first place .  We do this, because we want to accumulate knowledge and learn.  I know for me,  Ill ask a question to save time too…like , Hey where are the keys?  That way I don’t have to spend time looking for them.  That is accumulating knowledge that someone else has for our own benefit.  Or, do you like the chicken or the fish?  I want to know the persons *perspective* that I am with to help me with my decision.

Enter Autism ( into the picture)… and questions can work abit differently.  Children with ASD can ask questions over and over again because of anxiety over a future event.   With my oldest son,  his use of questions was for a  purpose related to anxiety, but more complex.   He asked me questions all day because he wanted to feel competent that he knew where the conversation was going…in other words,  he removed all uncertainty in our conversation so that he could feel safe when he talked to me.  He asked me questions that he knew the answer too.  The interaction went something like this…  He would ask me a question, then I would try and answer him and if I did not answer him the exact way he was thinking I would,  he would then answer the question after I answered the question.  This of course meant that he knew the answer to the question before he asked me. Needless to say,  in no short time this drove me insane as I answered questions all day only to realize he already knew the answer.

I remember saying to his therapists ( This started around 6 years old )….MAKE HIM STOP! Lol  and we tried many different behavioral strategies.  It was not until he was around 9 that developmentally he was able to feel safe in the uncertainty of a *open ended conversation*.  We had been doing RDI with him for over a year at this point to help him get there.

A strategy that worked for us… I would ask him, Oh you know the answer to this!  Then I would say, so I love that you talk to me…anything you say ( decreases anxiety) and it sounds like you are trying to tell me something …Here is how you tell me something without asking a question ( and still knowing that the outcome is the same)  Then I told him how to reword the question into a *Mom, quess what* statement… Meaning to open it up like, quess what ( and then tell me instead of ask me).  This helped him to then be ok with my *answer* too, as he started to enjoy the back and forth and be resilient in not having to know the answer.  There are many different strategies hooked into this, this is just the beginning one.  However, within my own sons RDI program, I recognized at the same time we really needed to address this at its core too.  He was asking me questions because he so wanted to be successful with me in an interaction…and for him, asking the question and me answering was SUCCESS.  So who would not want to repeat success…right???  We do all the time…when we go out with a friend, etc and we have a great time,  one of the first things we say is..lets do that again!  We know though that it’s the relationship that we want to *do* again,  not the exact events and actions of the time spent. 

If your child is asking questions that he knows the answer too, try the strategy above.  In addition, here are a few beginning tips to work on a few of the core deficits of Autism- dynamic analysis, experience communication, and  Episodic memory.  Addressing competence and resilience from the ground up is crucial to help your child understand thoroughly the WHY of communcation.

Working on Dynamic Analysis-   Our kids need help knowing the important part of the interaction.  Instead of paying attention to the *answer*, focus more on the relationship ( I love when we talk to each other or I love your smile!)  Your child hears your thoughts that you are paying attention to more than just their question.  At first there may be some anxiety over you not answering them right away, but you are giving them the opportunity to process your perspective ( you have their attention as they wait for what they *want* to hear).  You can follow this up with commenting to them a great way to tell *Mom* something is hey Mom…_____________,

Working on Experience sharing communication-  When your child asks you a question that they know the answer too, use non verbals to answer them and then pair the non verbal communication with a strategic pace of any comment you make ( for Dynamic analysis). Strategic pace is pausing at the moment that is important …to highlight and say to your child…here…this is important to pay attention too!

Working on Episodic memory- look for opportunities when helping your child feel secure in his communication to reflect on past experiences of the subject that he is asking about.  Recalling past events, reviewing success and reminiscing about joint shared experiences will help your child’s motivation to want to continue to build a conversation with you,  even when he is unsure of the outcome ( an open ended conversation).  This is a great time to talk about your emotions and /or your childs emotions as a reflective process.  This helps your child see that communication is a reflective process built on experiences,  and is truly a back and forth interaction where the uncertainty is an interesting aspect of a conversation and not something to produce anxiety.

 

For more on RDI www.whatisrdi.blogspot.com

 

 

ese children need to constantly know what is coming up to feel secure. Questioning becomes a way of making the world more clear, consistent, and predictable.

2. Some children experience anticipatory anxiety (strong excitement about what is coming up) and will continually question as a way of coping with anticipation.

3. Some children who want attention will repeatedly ask the same question as a way of interacting, getting attention. This occurs especially if they either do not know how to get attention in other more appropriate ways, or if the intensity of reaction they get from questioning is much stronger then what they get for appropriately initiating interaction.

ese children need to constantly know what is coming up to feel secure. Questioning becomes a way of making the world more clear, consistent, and predictable.

2. Some children experience anticipatory anxiety (strong excitement about what is coming up) and will continually question as a way of coping with anticipation.

3. Some children who want attention will repeatedly ask the same question as a way of interacting, getting attention. This occurs especially if they either do not know how to get attention in other more appropriate ways, or if the intensity of reaction they get from questioning is much stronger then what they get for appropriately initiating interaction.

There are a few behavioral techniques that have worked successfully for me with several children I have worked with in the past:

1. Answering the child once when they repeat a question, then telling them that is the last time they will answer. From then on in, the parent gives no verbal response. They may shake their head no, but not give a verbal answer. In all cases, the parent’s verbal answer is what reinforces the child to ask again. This is discussed with the child ahead of time, so he knows the parent will not verbally answer anymore. This would probably cause increased problems for Robert.

2. For some children answering only once is not enough, so you might try answering no more than three times. Then with each answer you count them off. When you hit three that is it.

3. Some children will inhibit the response if you repeat the question to them. So the second time they ask the question, “Are we going to McDonalds for dinner?”, you say “Bobby, are we going to McDonalds for dinner?” They will usually give you the answer, and stop repeating the question.

4. For an older teen, who could read and write, we would answer the repeated question one time, then have him write down the answer and carry it with him. If he asked again, the parent would refer him to his note. Another technique that has worked is writing the answer down on a note board and referring the child to that board. This worked well, since the verbal response is what reinforces the repeated questioning.

5. This next technique is for children who find it real difficult to stop, so we gradually decrease the behavior as the child becomes more controlled in refraining from questioning. It is more complex but has worked well.

a. The parent keeps track, for a couple of days, of how frequently the child repeatedly questions during the day (let’s say an average of six times a day) and how many repetitions of a question the child averages (let’s say five repetitions of a question). Then from there we write a plan to start gradually decreasing those frequencies (the number of repetitions of each question, and the number of times a day repeated questioning occurs.

b. To decrease the number of repetitions child gives per question, if the average frequency is five, we would start by answering the child up to four times. We would tell the child that we can only give up to four responses. Each time the child repeated the question, the parent responds “this is number one” and answers the question. Then each response starts with “this in number 2, 3 or 4” and answers the question. At the forth time the parent reminds the child they cannot answer it again. If the child stops asking, the parent will praise the child, “Sally, you really please mommy by not questioning after I told you no”. If the child asked again, the parent shakes her head no, and gives the child the manual sign for “no”. The parent does not give another “verbal answer” to the question, regardless of how intense the child gets. When the child gets used to asking only up to four times, then we decrease to three times. We gradually decrease to twice and only once.

c. Now, we want to reward the child for stopping at the predetermined number of repetitions, as well as decrease the number of repeated questionings throughout the day. In this example, the child averages repeated questioning six times a day. We start at that number. We make a laminated chart with six boxes on it. We also post a picture of a few rewards that the child can earn next to the board. For each time the child engages in repeated questioning, when he doesn’t stop at four, the parent puts a cross, or frown face, in one of the boxes (with an erasable marker). The parent tells the child that if there is at least one box left by a certain time of the evening, the child will get their choice of one of the rewards. So, in this case, if the child has four or less times when he doesn’t stop repeated questioning, he will earn a reward. This way, we start with were the child is at, teach him how to earn the reward, and then slowly started reducing the number of boxes (chances) he has to earn the reward. So for step b above, when the child asks for the fifth time, the mother shakes her head no, gives manual sign for “no”, and walks over and crosses out one of the squares. If the child has at least one box left by the evening, he gets his choice of reward. If he has all five boxes crossed off, parent shows him, tells him he cannot get the reward tonight, but he can try again tomorrow.

Another way you can work this, is using the same style board, give the child a star in each box each time he stops the questioning at the predetermined amount without going over. So, if the child stops at four repetitions, the parent praises him, and gives him a star to put on his chart. Once he earns the right number of stars he earns a reward.

6. Another technique is to answer the child once or twice. Then the next time the child asks, you tell him you will not answer that question again, and ask him a simple question to redirect him. This way you are redirecting him to talk about something else. If he doesn’t answer, but asks his question instead, you continue to ignore his question and continue to ask him your question until he answers. If he answers your question and goes back to his, you simply ask another question about the issue you want to talk about and keep focusing on what you are asking him. Eventually they learn to take the redirection and converse on what you want to talk about.

Remember almost all of the techniques focuses on 1) stop rewarding his repeated questioning with “verbal answers” and 2) focusing (rewarding) him for responding the way you want him to do.

ese children need to constantly know what is coming up to feel secure. Questioning becomes a way of making the world more clear, consistent, and predictable.

2. Some children experience anticipatory anxiety (strong excitement about what is coming up) and will continually question as a way of coping with anticipation.

3. Some children who want attention will repeatedly ask the same question as a way of interacting, getting attention. This occurs especially if they either do not know how to get attention in other more appropriate ways, or if the intensity of reaction they get from questioning is much stronger then what they get for appropriately initiating interaction.

There are a few behavioral techniques that have worked successfully for me with several children I have worked with in the past:

1. Answering the child once when they repeat a question, then telling them that is the last time they will answer. From then on in, the parent gives no verbal response. They may shake their head no, but not give a verbal answer. In all cases, the parent’s verbal answer is what reinforces the child to ask again. This is discussed with the child ahead of time, so he knows the parent will not verbally answer anymore. This would probably cause increased problems for Robert.

2. For some children answering only once is not enough, so you might try answering no more than three times. Then with each answer you count them off. When you hit three that is it.

3. Some children will inhibit the response if you repeat the question to them. So the second time they ask the question, “Are we going to McDonalds for dinner?”, you say “Bobby, are we going to McDonalds for dinner?” They will usually give you the answer, and stop repeating the question.

4. For an older teen, who could read and write, we would answer the repeated question one time, then have him write down the answer and carry it with him. If he asked again, the parent would refer him to his note. Another technique that has worked is writing the answer down on a note board and referring the child to that board. This worked well, since the verbal response is what reinforces the repeated questioning.

5. This next technique is for children who find it real difficult to stop, so we gradually decrease the behavior as the child becomes more controlled in refraining from questioning. It is more complex but has worked well.

a. The parent keeps track, for a couple of days, of how frequently the child repeatedly questions during the day (let’s say an average of six times a day) and how many repetitions of a question the child averages (let’s say five repetitions of a question). Then from there we write a plan to start gradually decreasing those frequencies (the number of repetitions of each question, and the number of times a day repeated questioning occurs.

b. To decrease the number of repetitions child gives per question, if the average frequency is five, we would start by answering the child up to four times. We would tell the child that we can only give up to four responses. Each time the child repeated the question, the parent responds “this is number one” and answers the question. Then each response starts with “this in number 2, 3 or 4” and answers the question. At the forth time the parent reminds the child they cannot answer it again. If the child stops asking, the parent will praise the child, “Sally, you really please mommy by not questioning after I told you no”. If the child asked again, the parent shakes her head no, and gives the child the manual sign for “no”. The parent does not give another “verbal answer” to the question, regardless of how intense the child gets. When the child gets used to asking only up to four times, then we decrease to three times. We gradually decrease to twice and only once.

c. Now, we want to reward the child for stopping at the predetermined number of repetitions, as well as decrease the number of repeated questionings throughout the day. In this example, the child averages repeated questioning six times a day. We start at that number. We make a laminated chart with six boxes on it. We also post a picture of a few rewards that the child can earn next to the board. For each time the child engages in repeated questioning, when he doesn’t stop at four, the parent puts a cross, or frown face, in one of the boxes (with an erasable marker). The parent tells the child that if there is at least one box left by a certain time of the evening, the child will get their choice of one of the rewards. So, in this case, if the child has four or less times when he doesn’t stop repeated questioning, he will earn a reward. This way, we start with were the child is at, teach him how to earn the reward, and then slowly started reducing the number of boxes (chances) he has to earn the reward. So for step b above, when the child asks for the fifth time, the mother shakes her head no, gives manual sign for “no”, and walks over and crosses out one of the squares. If the child has at least one box left by the evening, he gets his choice of reward. If he has all five boxes crossed off, parent shows him, tells him he cannot get the reward tonight, but he can try again tomorrow.

Another way you can work this, is using the same style board, give the child a star in each box each time he stops the questioning at the predetermined amount without going over. So, if the child stops at four repetitions, the parent praises him, and gives him a star to put on his chart. Once he earns the right number of stars he earns a reward.

6. Another technique is to answer the child once or twice. Then the next time the child asks, you tell him you will not answer that question again, and ask him a simple question to redirect him. This way you are redirecting him to talk about something else. If he doesn’t answer, but asks his question instead, you continue to ignore his question and continue to ask him your question until he answers. If he answers your question and goes back to his, you simply ask another question about the issue you want to talk about and keep focusing on what you are asking him. Eventually they learn to take the redirection and converse on what you want to talk about.

Remember almost all of the techniques focuses on 1) stop rewarding his repeated questioning with “verbal answers” and 2) focusing (rewarding) him for responding the way you want him to do.

ese children need to constantly know what is coming up to feel secure. Questioning becomes a way of making the world more clear, consistent, and predictable.

2. Some children experience anticipatory anxiety (strong excitement about what is coming up) and will continually question as a way of coping with anticipation.

3. Some children who want attention will repeatedly ask the same question as a way of interacting, getting attention. This occurs especially if they either do not know how to get attention in other more appropriate ways, or if the intensity of reaction they get from questioning is much stronger then what they get for appropriately initiating interaction.

There are a few behavioral techniques that have worked successfully for me with several children I have worked with in the past:

1. Answering the child once when they repeat a question, then telling them that is the last time they will answer. From then on in, the parent gives no verbal response. They may shake their head no, but not give a verbal answer. In all cases, the parent’s verbal answer is what reinforces the child to ask again. This is discussed with the child ahead of time, so he knows the parent will not verbally answer anymore. This would probably cause increased problems for Robert.

2. For some children answering only once is not enough, so you might try answering no more than three times. Then with each answer you count them off. When you hit three that is it.

3. Some children will inhibit the response if you repeat the question to them. So the second time they ask the question, “Are we going to McDonalds for dinner?”, you say “Bobby, are we going to McDonalds for dinner?” They will usually give you the answer, and stop repeating the question.

4. For an older teen, who could read and write, we would answer the repeated question one time, then have him write down the answer and carry it with him. If he asked again, the parent would refer him to his note. Another technique that has worked is writing the answer down on a note board and referring the child to that board. This worked well, since the verbal response is what reinforces the repeated questioning.

5. This next technique is for children who find it real difficult to stop, so we gradually decrease the behavior as the child becomes more controlled in refraining from questioning. It is more complex but has worked well.

a. The parent keeps track, for a couple of days, of how frequently the child repeatedly questions during the day (let’s say an average of six times a day) and how many repetitions of a question the child averages (let’s say five repetitions of a question). Then from there we write a plan to start gradually decreasing those frequencies (the number of repetitions of each question, and the number of times a day repeated questioning occurs.

b. To decrease the number of repetitions child gives per question, if the average frequency is five, we would start by answering the child up to four times. We would tell the child that we can only give up to four responses. Each time the child repeated the question, the parent responds “this is number one” and answers the question. Then each response starts with “this in number 2, 3 or 4” and answers the question. At the forth time the parent reminds the child they cannot answer it again. If the child stops asking, the parent will praise the child, “Sally, you really please mommy by not questioning after I told you no”. If the child asked again, the parent shakes her head no, and gives the child the manual sign for “no”. The parent does not give another “verbal answer” to the question, regardless of how intense the child gets. When the child gets used to asking only up to four times, then we decrease to three times. We gradually decrease to twice and only once.

c. Now, we want to reward the child for stopping at the predetermined number of repetitions, as well as decrease the number of repeated questionings throughout the day. In this example, the child averages repeated questioning six times a day. We start at that number. We make a laminated chart with six boxes on it. We also post a picture of a few rewards that the child can earn next to the board. For each time the child engages in repeated questioning, when he doesn’t stop at four, the parent puts a cross, or frown face, in one of the boxes (with an erasable marker). The parent tells the child that if there is at least one box left by a certain time of the evening, the child will get their choice of one of the rewards. So, in this case, if the child has four or less times when he doesn’t stop repeated questioning, he will earn a reward. This way, we start with were the child is at, teach him how to earn the reward, and then slowly started reducing the number of boxes (chances) he has to earn the reward. So for step b above, when the child asks for the fifth time, the mother shakes her head no, gives manual sign for “no”, and walks over and crosses out one of the squares. If the child has at least one box left by the evening, he gets his choice of reward. If he has all five boxes crossed off, parent shows him, tells him he cannot get the reward tonight, but he can try again tomorrow.

Another way you can work this, is using the same style board, give the child a star in each box each time he stops the questioning at the predetermined amount without going over. So, if the child stops at four repetitions, the parent praises him, and gives him a star to put on his chart. Once he earns the right number of stars he earns a reward.

6. Another technique is to answer the child once or twice. Then the next time the child asks, you tell him you will not answer that question again, and ask him a simple question to redirect him. This way you are redirecting him to talk about something else. If he doesn’t answer, but asks his question instead, you continue to ignore his question and continue to ask him your question until he answers. If he answers your question and goes back to his, you simply ask another question about the issue you want to talk about and keep focusing on what you are asking him. Eventually they learn to take the redirection and converse on what you want to talk about.

Remember almost all of the techniques focuses on 1) stop rewarding his repeated questioning with “verbal answers” and 2) focusing (rewarding) him for responding the way you want him to do.

 

Independence day = INTER dependence day

Independence day= “Inter”dependence Day

As we commemorate the 236th anniversary of our Declaration of Independence, taking a look back at  our history helps remind us of our successes,  and where we need growth.

Today is a day to celebrate independence…to celebrate those who fight for our continued independence, and to remember those who gave the ultimate sacrifice so that we can be here, free, writing whatever we wish to write.  While it is easy to take these freedoms for granted in the day to day, today is a special day to give a shout out…as Americans, to say THANKS to all of you who fight for freedom,  in any arena!

The older I get,  the more I realize the war on maintaining freedom extends to many different areas of our lives,  both collectively and individually.  While acknowledge the big guns of freedom, I also wanted to take my own personal thoughts on a battle very real to parents every day, the freedoms for our children…with Autism.

A few weeks ago, in New Jersey I stood before Governor Christie asking for that freedom..the freedom of choice for parents to choose which intervention they wanted for their child and have the same funding options for their choice.  This freedom was crucial for my own 2 boys as our family remediated Autism in their lives.  I was fortunate to be able to show the logic of funding to my school district years ago,  which of course they are reaping the benefit now as my son is in High school, with friends, and will live an independent life ( when I was told he would not).

But we all have heard the professionals tell us what our kids will not be able to do.  We as parents have a choice to let their words define our babies future, or to let those words spur us on to make sure that is not the future for our children!

This is the same spirit, that independence is built on.  The declaration of independence…. to pursue hope, on their terms.

The lessons of interdependence leads the way for crucial understanding of true dependence.

The basic thought that guides these specific means of national recovery is not narrowly nationalistic. It is the insistence, as a first consideration, upon the interdependence of the various elements in all parts of the United States – a recognition of the old and permanently important manifestation of the American spirit of the pioneer.

U.S. President Franklin D. Roosevelt, First Inaugural Address, 1932

...for many of our white brothers, as evidenced by their presence here today, have come to realize that their destiny is tied up with our destiny. And they have come to realize that their freedom is inextricably bound to our freedom.

Martin Luther King Jr., I have a dream,

This is a huge topic for me because with my own two boys, about 7 years ago I had come to a crossroads.  My then 8 year old could do a bunch of things by himself, as we worked for years to get him to that point…but missed the whole point of sharing the experience and reactions of anyone around him.  He successful went through a program to teach him how to act, but not understanding WHY! I kept saying, if he could just talk, it would be ok,  then he did but it was only for his needs.  Then if he could have a friend, it would be ok,  but he couldn’t, because he did not *get* the social nuances and minute by minute steps that it took to have that back and forth relationships. For my younger son, who was 4 at the time, I was able to learn from that, and turn the tides for him , and his older brother to concentrate more on interdependence FIRST, to have that TrUE sense of independence, emerge right before my eyes. To help them from the bottom up… Our kids with Autism, blossom with taking their need for  static “independence” ( leave me in my own world so that I am safe and nothing changes) and changing that to concentrate on the relationship of interdependence.  This is where in fact I had to start with my own kids.  This quote, speaks volumes for long term thinking…interdependence is necessary to success in marriage, family and organized realty ( LIFE that does not go as planned day to day)

Independent thinking alone is not suited to interdependent reality. Independent people who do not have the maturity to think and act interdependently may be good individual producers, but they won't be good leaders or team players. They're not coming from the paradigm of interdependence necessary to succeed in marriage, family, or organizational reality.

Stephen Covey, The Seven Habits of Highly Effective People, 1989

Think of your own child with Autism.  Do you find yourself working on skills and behaviors,  yet still there is that missing piece and you wonder if there isn’t a more pro active way to address the goals? There is…through guiding our kids through the developmental stages of  Interdependence… it is worth fighting for in our children and will bring them to an understanding of the experience process in relationships.  My youngest son, diagnosed at 18 months, severe infantile Autism,  understands reactions, perceptions and perspectives, as well as independence in the exciting things he can do as an 11 year old.  It is a complete, balanced package that typical children already have in place…so we cant skip the core importance of INTER dependence, otherwise we are on that hamster wheel in trying to fix this behavior or that one.  Interdependence allows our kids to have that intruistic motivation that relationships are rooted in beginning at birth!!

So Happy Independence day…rooted in interdependence J

Kathy Darrow

Click here for my younger sons before and after- http://www.youtube.com/watch?v=jakn6_RqHB8&feature=plcp

Check out my other blog at www.whatisrdi.blogspot.com

Part two, A statement of Hope

Part one ( Click here) is my Mission preview for my then 7 year old…7 years ago. I did one for 2 years, 7 years and 15 years. MY mission preview then, was centered around my son understanding his social world, how to navigate friends and understand other perspectives. When I wrote this mission preview, he was attending a school for children on the spectrum. He had gone there the year before because his behaviors had gotten to where his placement had to change, because what I knew at the time, was not a good match. There were times when his aid would need to restrain him..and this was my wake up call. I needed to do something ELSE for him. The typical route at the time, behavioral conditioning, was not giving him the long term tools he needed…he had lots of skills, but not much else.


As I read over my old previews, I could only say .... mission statement fulfilled. I have blogs about the how to, and my story…and what is RDI click here so I wanted to make this post more about celebrating the ability to understand friendships…and understanding the importance of thinking ahead to *get back* what our kids need. A celebration of not only my son overcoming the obstacles that Autism presents, but the many other children and families who are in this journey... It is quite a journey that we, as parents can instantly relate too with one another! 

So why do I think a mission preview is important in this process? For me, it kept me focused on my goals for my kids. There are short term goals and long term goals…and without a mission…I was getting caught up in the reaction of all the short term issues. I was trying to *get* things to happen, or fix a behavior. Of course necessary, but sometimes thinking long term helped take me out of reaction mode and into proactive mode. I started to look at what my kids needed, as what was missing instead of how to put a band-aid on what they were *doing* at the time.

So as I took my 7 almost 8 year old on a new journey with Relationship Development Intervention, I was able to renew my mindset on what we, as a family needed to achieve. Going through those stages within RDI, each one filling in crucial developmental milestones, worked on both sets of goals, and both kinds of intelligence here…which led my son to the place where he is, a place where he can be in that group of teens, nominated on the snow court.

As I lay awake that night, thinking, I remembered all that the past *inflicted* upon me. 11 years ago Autism was not as common, and in some ways we have come a long way and others we are still stuck in the same old same old. What would have happened if we did not make that change when he was 7? I definitely know we would not be here…I would not be watching him with his friends, as they come over, as he goes over their house… as he attends dances, and is part of the student council. All that my son is doing now, 7 years ago, I was not sure he could get there. Like any mom, I wanted so much for my son to understand relationships. We had a good relationship, but out in the social world, so much MORE is needed in understanding. 14 and 15 year olds do not compensate...they expect you to be on equal playing ground. Thinking ahead to get back would be crucial! Instead of me trying to give him social skills to try and teach him every possible way to handle a conversation ( an impossible task), I instead learned that I needed to address things like resilience, perspective, and true meaningful communication, which was just the beginning. To be able to hold his own with friendships and relationships, communication skills and being able to take a chance are two must haves, along with knowing how to help the other person know we are interested in what they are saying .all the while insuring that our gaze to them shows us this. Yikes, where to start. Friendships do not start in a bubble. Infants are learning resilience which are the building blocks to trust, then grasping the back and forth of communication. Two years olds are already learning how to blend their way of seeing things with our way…which is why it’s called the terrible twos. The ability to understand friendships are grounded back …in development. I had to go back and give my sons that second chance at mastering this, before we could make any real progress.

Maybe your mission preview would read differently. No two are alike…but I encourage you to write it on paper. Visualize where your child needs to be in 2 years, 7 years, 15 years. Then base your goals on what your mission is for your child. This will prevent you looking at your 20 year old …wondering where the time went, faced with the hard truth that skills got them through school…but now what? Start addressing the now what?....NOW! Its never too early nor too late to restore your child’s developmental path to dynamic intelligence!


For more on friendships- Click here


More of my story is here

A mission statement of hope….first believing, then seeing

Today,  since we got snow and Im sitting here sipping coffee,  I figured I would share one of the highlights from early December...better late then never !
Last month,  my son, who is now 14 told me that I was allowed to come to the snow dance at school ( He is a freshman in high school) and take pictures.  Anyone with  a 14 year old understands the term allowed.  He told me that all the parents would be there at 9 to take pictures of the snow king crowning ( sort of like homecoming).  Of course I was like ok…then he mentioned to me that he is in the snow court so I might want to get there  alittle earlier.  My response was…uh, what?  He stares at me and says, Yeah Im in the snow court and walks away.  So as I’m standing there, frozen, watching him walk upstairs as if it is no big deal,  my first thought is, well,  ok  Im not sure how this whole snow king thing works so I guess Ill find out when I go.

3 days later the snow dance has arrived,  and Im  at a friend’s house  ( a ball party).  I knew I would need to leave at 9 to run to the school,  then come back to resume Moms night out. As I am driving to the school I get a call from my son,  who wants to know where I am.  It is 3 minutes to 9 ( gosh, what does he think, I’m always late or something??  J)  So I park,  run in and as I enter the hallway,  he is in the middle of a group of 10 kids,  5 boys and 5 girls, getting various pictures taken,  They are all wearing a sash.   I take a picture of them all together, just in time for them to line up for the DJ to start calling their names as couples…as nominees for the snow king.  I walk into the dance floor…turn around and everything is going in slow motion.  The DJ starts to announce the nominees…and each time the boy and girl walk through the doors and the crowd of kids cheer.  The DJ announce my son with the young lady nominee,  and he walks through the line as the kids cheer.  Im only able to get a picture of the end as there are just so many teenagers blogging my view  ( move it Mom here trying to take  a picture!!  Geez)

They all walk up to the stage and are given flowers..and told to open the card and the card says whether they won king and queen or not.  I watch and these 10 teens open their cards,  and the crowd cheers as two come forward excited that they won.  No,  my son did not win…but I still could not take my eyes off him.  He then came over to me,  I got a few pictures of him with his nominees and also with his date to the dance,  and then I left.  I got into the car and just sat there,  trying to compose myself as I was heading back to my party.  I did, and returned, and then came home and stayed up all night…pretty much sitting by the computer or on the couch.   At some points I wept,  because as I could not sleep,  his entire childhood up to this point flashed before my eyes. I just kept coming back to the night,  where his peers/classmates choose 5 boys to represent the class,  5 boys who were the most popular…and my son was one of them.  Now typically this is just a general feel good moment for any Parent,  but to me, and our family this moment is a significant milestone…  because around the age of 7, I wrote a mission preview for my son as part of an assignment … with my RDI consultant ( we were just starting RDI with my son at the time) A mission preview is also a concept listed in the book, 7 habits of highly effective people,  under, habit 2, begin with the end in mind.  Here it is-

2. Intermediate-Term Mission Preview: 7 years from now

14 years old- Sleepover

N knocks on the door of the youth group leaders house. S opens the door and is thrilled to see N was able to make it.

" Hey guys, I'm here, let the party begin" utters N as he makes his way over to the pool table. He instantly begins talking to a few of his friends about the night before and how a bunch of them got together and went to the hockey court to play a few games. They begin to play pool and N is one of the last three kids playing. He misses a ball and with that laughs and walks over to some of his friends. "Did you see that new movie yet N?" remarks one of his friends. "No, not yet," says N, "hey lets get a group together next weekend and go see it." They all agree. N notices a more quiet boy sitting around the group and also asks him about going to the movies. They start a conversation and N finds out that this boy just started coming out to church. He brings him into the group and makes him feel welcome. At this point the boys gather around for a lesson from. S. S talks about the pressures of approaching the teenage years and N and his friends have a great conversation with S about the challenges they face in their social life. S also introduces the new boy.

N has already met so and so and is helping him feel right at home."S comments" "I see that
but for anyone who has not gotten the chance to introduce yourself, make sure you do! They boys stay up till the wee hours of the morning eating and talking about everything boys talk about!

continued here

the two faces of anxiety

The fragile growth of the mind- Chapter 5 The cradle of thought


In this chapter, Mr Hobson looks at the growth of the mind and the different roles parents take, and how development unfolds. When I was finished reading this chapter, I concluded that the growth of the mind is definitely FRAGILE! For our kids on the spectrum, we are literally rebuilding their mind. What we want to make sure that we are doing is rebuilding their mind in a developmental sequence!

I am going to take a few things from this chapter to springboard on the topic of Anxiety. I am doing this because the chapter goes into detail about the parent/child relationship, how no two caregivers are alike, obviously, and the many factors that are taken in with child development. There are many components to the nurture part of our parenting, but because Autism comes along, that all gets turned on its head. The LACK of reaction from our babies and toddlers set us up for a spiral of different emotions and reactions to what is going on with our kids. Obviously our anxiety level is through the roof as we feel *lost* in how to *help*. Our days can become all about preventing anything that would set out child *off*. We become super parents because we can determine what is needed ahead of time in the hope that all will stay right in the world IF we can forecast every possible situation that could occur…and own it so we can control the outcome!

In essence, I am going to base much of what I am writing for Chapter 5 on a sentence on the first page of Chapter 5.  " In order to understand and perhaps help with difficulties in parenting a baby, we need to find out what creates and what Militates against harmonious relationships."  As always, I recommend you read the "The cradle of thought" by Peter Hobson as I am just taking a piece of the chapter and talking about a specific topic.

So the question- What creates a harmonious relationship? And what force influences against a harmonious relationship? Huge question…That could go on forever! Thankfully I only want to talk about the foundation…the basics…the VERY beginning of this concept. In others words, what creates a harmonious relationship between a baby or toddler and their caregiver/parent. To know what creates this harmony , then what influences, can give us the answer to help when the relationship is not in place.

Thankfully, when relating this information to Autism, we are learning more and more how to help our kids. Cutting edge therapies based on relationships far exceed the previous notion that our children are just a sum of their behaviors. That said, behaviors do matter! With both a behavioral approach to Autism or a developmental approach, success is noted by the Behaviors of the child. The difference is of course,  knowing the foundations that are needed for the understanding of relationships, part of dynamic intelligence, compared to static intelligence which is rules and rote information.

When I visualize my baby or any baby, those first few weeks the harmony comes from supplying their need. Meanwhile, we all as parents were awaiting that first connection…going from you give me food to Hey well… Hi there. The first smile that we refuse to believe is gas! The lack of sleep, pain, it is worth it for the feeling we have when the *relationship* starts. Couple the relationship piece with giving our children their needs…and you have the makings of trust and security. Those two topics will be for the next chapter because for right now, we are concentrating on the breakdown of the *relationship*, caused by Autism. Infantile Autism or regressive Autism alike, are both linked to the breakdown of relationship, just at different ages.

What I LOVE about exploring the origins of thinking, is that we can ask ourselves questions like, ok so, what takes a relationship to the next level….in the most basic form!? For me, the answer to that question is something inside me, allows me to take the relationship further, ANY relationship. It has NOTHING to do with the other person…YET. Some of you may have guessed already…its resilience! Resilience is the ability to recover quickly from change. With babies, we know not to overwhelm them…to build up their resilience. We know that the back and forth goo goo and gaa gaa is creating in them resilience that we answer them when they are with us…that there is that back and forth. BUT take an environment that is overwhelming, noisy, etc and their lack of resilience is hard to miss ( a screaming child). I know I keep repeating myself, but we all know that a screaming baby means an overwhelmed baby. Within typical development, this *uncertainty* actually builds up resilience ( as long as it is not extreme). Most of you can relate that we can give the Mom a reassuring look when her baby is screaming, overwhelmed, etc.

Here’s the thing, for our children with Autism, their *state* of uncertainty did not build resilience for them when they were younger..it has the complete opposite effect. It makes them crave sameness…in an effort to prevent the uncertainty that is just too scary. On page 142, “ There is so much that a young child acquires through others that there are real disadvantages for the infant or toddler who is unable or unwilling to engage with other people in their dealing with things.”

Of course we, as parents of children with Autism, understand this difficulty. Taking it that step further, understanding resilience, and uncertainty that builds resilience…. is KEY!

Time magazine did an article last month on the two faces of anxiety.
http://randomtidbitsofthought.wordpress.com/2011/12/13/why-anxiety-is-good-for-you/

The definition of Anxiety is .A state of uneasiness and apprehension, as about future uncertainties

The article talks about how Anxiety can be good for us… helping to sharpen our senses! Yes, I do agree with this…because again, this comes back to resilience. We can grow in resilience by productive anxiety, or too much to cope with, unproductive, we shut down.

If you have a child on the Autism spectrum , reflect for a moment why they are inflexible, controlling, passive, inattentive, anxious…. Consider their resilience (bank).

Consider what their therapy/Intervention is doing for their resilience? IS it making deposits in their resilience bank, giving them the tools they need where you see improvements with flexibility, etc ( without reinforcers)… or is it making your child MORE controlling, More anxious ( sure signs that something needs to change). Children on the spectrum are on anxiety medication at a record rate…and as one study suggests, behavioral therapies can help a child learn skills…but increase their anxiety. That is too high of a cost!

For my 2, addressing how they handled uncertainty by addressing developmental milestones…taking how they *feel* from unproductive to productive, began in them a chance to build up resilience. Especially for my older son who was around 8 at the time when we officially started RDI, going back to address this made the difference between an anxiety filled child, who was inflexible and controlling, to a 14 year old today who no longer has those core deficits of Autism, in our neighborhood school, has friends, etc..  Side note- In 1st grade my son controlling behaviors and anxiety were off the charts and there were times he would need to be restrained by his Aides.( heartbreaking!!)..and for 2nd grade he was shipped to a school for children with Autism!!

Autism robs a child of their emotional foundation- Dr Oz

Chapter four The Cast of thought


What is our emotional foundation? Or more importantly, if Autism robs our children of this foundation, how do we *get it back*? To answer that question, we need to look at how our emotions emerge in the first place! How do we *think* about thinking?


We know our capacity to think and feel with our own perspective is a human trait. It is something I, as a parent took for granted before Autism came into my life.


This chapter goes into the process of having thoughts…and then perceiving that we are having thoughts. We obviously all have thoughts, and as we are thinking, we know other people who we are interacting with are also thinking. We know that they may be thinking different things then we are, but at the same time we can carry on a nice back and forth conversation or action because we are able to adjust to perspectives. For children on the spectrum, they think, but on in a very rigid manner. Their thinking can be black and white and since it can be hard to understand that other people have thoughts too, it appears that in every interaction, it is all about them or how something affects them.


For an example of this, I was reminded this week of the show Dragnet. If I admit I remember the show I admit my age so I what I will say is I think I was too young to watch it. :) But I remember people talking about it. Anyway, Sergeant Joe Friday would go into a situation and try and get information, and usually was encountered with * emotion*. He ended up having to shift through all the perspective and emotions to get * just the facts*. Of course this is necessary at times, but what if the brain was wired in such a way where it always asked *just the facts”? The world was seen as objective, just knowledge and facts.


The fact is, this would mean the neurology of that person had gaps in their early developmental milestones that prevented their emotional and social foundation from emerging. These gaps, then cause the domino effect of skills being build without the understanding of the social or emotional function of the skill. Knowing that you can think, in comparison to being able to perceive your thoughts and perspetives is at the heart of Chapter 4.


When our brains are comfortable and relaxed, we tend to be able to entertain thoughts, contemplate, or ponder much easier and be subjective in our thinking. We have opinions, feelings, emotions that are all built on what we have perceived.


We move from thought to though, we daydream, we come *back to reality* . WE can take an object, think about it, its color, its size, what we want to use it for. We can take up different perspectives to the very idea of having a thought about something- page 96


How does, and when does *this* start?


On page 99 Hobson talks about Symbolism. Symbolism enables us to think about Absent realities. As I continued to read, he used the example of a painting and what we *see* when we look at it. How do we interpret what the picture or painting is saying. If it is a picture of a memory, we look at the picture and reflect on that time, we ponder and entertain our emotions during that picture. We don’t simply look at the picture and think, Im wearing a blue shirt, there is a dog in the background, etc etc. The picture represents a symbol of our perspective.


One of the assessments within RDI, is reviewing meaningful pictures with a child. It is common for children with Autism to view pictures or paintings as something to label. By keeping track of this process, we can see the progression from the start where the child views pictures as items to label,.. to a representation of their own perspective as the child’s developmental gaps are filled in to what they were doing in the picture and their own perspective..


On poge 103, Hobson asks the question-How does the infant escape her sole view of the world to gain a vantage point from which she can survey the scene from a number of perspectives? I was a little surprised to read that object permanence was the next factor in this ability.


The reason this was fascinating to me is because in my experience with Autism, both as a parent and as a professional, one of the diagnostic criteria in the DSM for Autism is *plays with toys inappropriately.* so right there, we see that the part of the brain that fosters object permanence is affected.


“Object permanence is the understanding that objects continue to exist even when they cannot be seen, heard, or touched. It is acquired by human infants between 8 and 12 months of age via the process of logical induction to help them develop secondary schemes in their sensori-motor coordination. This step is the essential foundation of the memory and the memorization process.”


Alongside Object permanence and logic, an infant begins to see their world through the eyes of their parent, through borrowing their parents perspective. We see this with a child who checks back with an adult for safety before doing something they are unsure of. We also see this if a child falls or is startled in any way, and looks at his caregiver for their perspective before they react. Sometimes we as parents can hijack those tears if we smile and say Youre ok, compared to giving them a startled face in return and rushing towards them saying oh no are you ok? Alright I’ve done both, I’ll admit it! :) That is a great example of our babies learning about perspective by borrowing OUR perspective first! Great stuff in this chapter!


AN example of logic and perspective borrowing hand in hand is imitation. When you play on the phone and pretend to talk and a baby does imitates, or when a young child plays dolls…children even as they get older process their world through the perspective of their trusted parent The infant is learning about the toy but at the same time that toy is telling them alittle about their mom.


This is how perspective emerges, by the infant gaining a vantage point from which she can survey the scene from a number of perspectives. Page 103


In contrast, a child with Autism has had that neurological path effected in a way that they did not gain ( Or they lost something they once had) the foundational ability to see the world through another’s eyes, and have started down the path to see the world first through their own eyes. This information is crucial in knowing how we can restore development and perspective for our kids! We know that children on the spectrum want to keep their world *their* way, their perspective and easily fall apart when we reach into their world with our perspective. We know this is an important milestone that cannot be skipped when going back and giving our children a chance for a do over in their development.


While I can’t cover everything in this chapter, I wanted to end with talking about the role of language in the progression of perspective.


On Page 111…simularities between language and play words are used for communication in play and perspective. Learning language communicates social understanding. Once a child starts to *talk* they are typically excellent communicators socially and emotionally. They have already began the process of object permanence , symbolism, and borrowing perspectives. They are well on their way of understanding that they have their own perspective while another can have a differing perspective. I blogged about it here http://autismremediationforourchildren.blogspot.com/2010/07/principle-of-perspective-part-one.htm

Without these foundations in place or restored is lost, learning language becomes a static skill. This is evidenced by its purely instrumental use for labeling, needs , wants or scripting and not for emotional sharing or perspective. This is also the reason grammar is confused. To give an example, children will repeat the sentence said to them in order to respond. If you ask a child “ Do you want a drink of water” and when they are thirsty again and say to you “ do you want a drink of water” as their means to ask, they are missing the milestones and perspective taking necessary to determine how to change that sentence to express your perspective to their perspective. My own child years ago would continue to say Say when we were asking him to say Water, He did not understand that he was able to drop the “say” These are all indicators that a child does not use language correctly in relation to perspective communication. They do not yet have the skill to switch viewpoints in seeing the world through someone else’s eyes first, and then their own. One of a pet peeve of mine is Autism interventions who work on teaching language without these prerequisites in place. It is a pet peeve of mine because I myself did this to my one child on the spectrum. Once I learned about his developmental milestones needing to be addressed, I had to go back and undo how he learned language ( his chatter about nothing in particular or obsessing over a topic), and work on perspective within communication. By doing this, he now has the tools for meaningful friendships that are only possible with someone who is able to understand that both parties are *thinking and have a perspective” in an activity. For my second child on the spectrum I had learned how to effectively encourage communication within development. He never had any pronoun issues or lack of experience sharing communication.

A mom in the audience of the Dr Oz show said her son had a 4.0 average academically but cannot make a friend. The ability to make a friend starts in infancy…before language or before learning skills, It is rooted in our children’s emotional foundation.


This chapter reminded me why it is extremely important to understand the effect of addressing developmental milestones ( and what happens when we do not) in our children.  Our kids, any child, dx or not, have enough to struggle through understanding childhood... removing certain obstacles to give them a better understanding of the social world is a huge advantage to this wonderful children!!

We won't sit still and let Autism continue to rob our children of the ease of their social and emotional abilities! We are taking back our children and removing as many obstacles for them as we can!!!

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
http://thinkingautismguide.blogspot.com/2011/02/for-physicians-10-things-you-can-do-to.html?m=1

). 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 ( http://www.rdiconnect.com/pages/Find-a-Consultant.aspx ) 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.