Communication Challenges with Challenged Communicators

Autism is primarily a disorder of communication.  Children with autism struggle with the spectrum of communication that includes actual expressive language to the subtleties of non verbal language.  They may not understand mom or dad's angry look, or the frustration of siblings or peers. Which is why we spend lots and lots of time working with them on how to communicate.

Yet despite this obvious trait of kids on the spectrum, so many of us - parents as well as professionals - spend agonizing amounts of time trying to teach them certain life lessons with - language - their weakest suit!  You can certainly ask: "If they need to learn language, that's how we have to communicate - what else are we supposed to do?"  And there is something to that question.  But I also think that we miss something when we spend lots and lots of time "talking" with them.  In my experience, many kids with communication issues just tune out, despite their best efforts to actively communicate.  It's a weak suit and when we spend too much time playing to that WE get frustrated that they don't keep up, even though it's likely that they can't keep up.

So we have a dilemma.  Do we stop verbal communication with them?  Certainly not.  What am I advising, then?  What I think we need to do as professionals is be cautious of parents who come to us wanting "talk therapy" with their kids who are on the spectrum or who have other communication obstacles such as those posed by some cognitive delays.  How much can the child benefit from talk therapy?  We need to be cautious of feeding in to parent hopes that this time, this therapist will finally be able to "get through" to him/her when that is sometimes an unrealistic goal.  

What do I recommend to parents?  Remember that your child's disability is first and foremost communication based.  Mixing your communication with him/her with your anger, yelling or shaming is only going to confuse your child.  (I think there's a place for anger and shame in parent - child relationships, but that's another discussion for another time.  Yelling - not so much.)  Avoid sounding like the teacher in the Charlie Brown cartoons - a "wa wa" sound that is never intelligible.  If you've asked your child to do something, repeating it numerous times will only teach him/her that the first time doesn't matter (true for kids with special needs or not, btw.)  Enforcing compliance does not happen by endless chattering.

Sometimes less (communication/repetition/harping) is more.

What's The Weather Like?

Have you ever noticed how often we discuss the weather?  It's always on the news - sometimes it's so important it leads the news.  We discuss it with our families, friends and co-workers.  The weather report is the butt of jokes - when people have nothing else to discuss, they discuss the weather. 

Why?

I believe the reason we spend so much time discussing the weather is that we like to anticipate, we like to know and plan what's coming next.  Will I need a sweater, a coat, an umbrella?  Short or long sleeves?  We understand how important being uncomfortable is and want to avoid that.

This is similar to the need to help our kids, with or without disabilities, transition.  A lot of ink is spilled about helping kids transition from one activity to the next.  One major difference between the kids need to be prepared to transition and our desire to know the weather is that we understand how being unprepared for the weather can be a problem.  Our kids don't understand, and don't want to understand the impact of transitioning on their emotions or behavior.  They just want to have fun.  They just want to fully express their energies on whatever activity they're doing at the moment, particularly when it's a "preferred" activity. 

So when parents don't prep their kids and just expect them to turn off their electronics of choice - even if it means "pausing" the current game, or put down their book, or for their friend to go home etc. they're asking for trouble.  Kids need lots and lots of prep for transitions, even if they don't say they do, or if they don't act like they do. 

If you're unsure how important this is to your kids, try to go a few days without listening to the weather report. 

One Year Later

It's been a year since I've begun this blog - something I was told I absolutely HAD to do and which I resisted strongly.  As I don't read many blogs myself, I wondered who would?  Well, exceeding my expectations, there have been almost 1100 readers this first year.  So, I ask you, what would you like to hear about? 

Feel free to let me know at Moshe.Manheim@gmail.com.

My best to you for the coming year's reading and growth!

Moshe

Team Building and Fun

A friend of mine had an interesting reflection on his team building experience.  He was in a graduate program of about 30 people.  The group had not really jelled until one night the whole group went to a bar and did what graduate students do at bars (you can fill in the rest.)  He noted that after that experience the entire group had a much closer bond.  Gone was the distance between people.  Everyone was close.  They had a shared experience together, a fun shared experience that permanently changed the group dynamic.

So what does this have to do with autism, families or growth?  People with autism, particularly higher functioning folk, often struggle with how to establish friendships. Professional services are full of "social skills groups" and 'team building" to help these folks learn these skills.  And it is important to note that many of this HFA population very much wants to have these connections with others. 

So what about my friend's experience is so difficult for the autistic population?  I think it has to do with the sense of relationship and sharing that happens as friendships develop.  Simply put, it's how to have fun together.  Remember that one of the significant "delays" of the Pervasive Developmental Delay is that skill that has to do with social relationships - how to make friends, the give and take of creating emotional bonds - how to have fun.  So consider the essence of these activities - being social, emotions, emotional "reciprocity," including spontaneous "reciprocity of speech" or the ping pong NT's (neuro typicals) have in the course of conversation.  These are all the things that folks on the spectrum struggle with.  So it makes perfect sense, then, why a night of blowing off steam for my friend in graduate school created the emotional bonds that folks with autism struggle.

Fun.  Consider for a minute what fun is to you.  Most NT's enjoy sharing their fun - at least some of the time.  Most folks on the spectrum have fun alone, whether it's with a video game, or reading, or surfing the web.  The video game may be a fun activity that can be shared, but so often that is done remotely, so the sharing is literally on the screen with one's partner being anywhere else on the planet. 

How to help folks on the spectrum with these issues?  Practice, practice, practice.  Support, support, support.  Guidance and patience, followed up with - you guessed it - guidance and patience.  Providing opportunities for practice, the support, guidance and having the patience needed to do so is often a struggle for caregivers, a discussion for a different time - and I'll be happy to address those should you want.  But in the meantime, it is interesting to reflect on my friend's experience of the connection between fun and building friendships. 

The Missing "I" in ADHD.

ADHD, Attention Deficit Hyperactivity Disorder is the most commonly diagnosed psychiatric disorder in children effecting approximately 5% of all children.  The rates among children with autism are cited to be over 50% (Leyfer et al, 2006) and in my experience, children with other developmental disabilities have a much higher rate of ADHD as well. 

The symptoms of ADHD are well known:

• High rates of distractability, inattentiveness and inability to focus or concentrate
• Hyperactivity that can include motor (fidgetiness) and hyperverbosity (chatterbox)
• Impulsivity, both verbal and physical (aggression)

The last symptom, impulsivity, doesn't get credit in the ADHD title, however.  Shouldn't it be ADHID?  My advocacy for the missing "I" is due to the frequent incidence that I've found in how challenging (frustrating, maddening, crazy making, choose your descriptor) impulsivity is. 

Kids blurting out how much they "hate" their parents, siblings, family members and teachers.  Death threats, rarely meant, but in our current world in need of stern attention, inadvertently reinforcing the behavior to boot.  Physical aggression against family, peers etc.  These are the behaviors that try parents' patience to the hilt - and so many parents end up over-responding and thus adding to the inadvertent reinforcement of what is, essentially, just a symptom of ADHD.  One test, by the way (not infallible) of whether the impulsivity is really based in ADHD is whether the child has remorse afterwards when calm.  We like remorse for bad behavior. 

So, for those of you with kids with ADHD, remember, those really challenging behaviors that make you want to tear your hair out - could they be the result of the missing "I?"  It's worth keeping in mind. 

Emotional Muscle Memory

Athletes hone their expertise through repetitive practice to reinforce what we call muscle memory.  Over and over they will throw, run, jump, catch, swim and with good coaching learn the subtleties of how to excel in their sport.  This is true for kids as well as professionals.  When my now adult son was involved in Kung Fu beginning in early elementary school, he was quite motivated and practiced his moves repeatedly until he was fluid with the movements and techniques and earned great praise from his sensei.  The focus children - and even adults - learn in working on their physical muscle memory serves them well.  (I keep on threatening to again take golf lessons to fulfill my dream of a 200 + yard drive from the tee.)

So why do we not have the same level of focus, concentration and repetition in the area of emotions, relationships and families? 

So many of us have histories filled with trauma and great emotional pain, losses that mightily weigh on our ability to cope.  These wounds result in emotional callousing and maladaptive behaviors that can so easily sabotage our own mental stability, our marriages and our relationships with our children and families.  So why not consider the reparative work in the same way we consider athletic conditioning that results in muscle memory?  We need and deserve to have coaching - whether from a professional, friend or loved one - that help us consider alternatives to the emotional patterns that we have adopted as a result of our histories. 

An example of the need for emotional "muscle" memory has to do with a number of couple's I've been seeing lately where the wives are in great pain about the emotional distance they experience from their husbands.  These men, quite successful, have come from families where there was lots of "dysfunction" such as addicted parents, distant and self absorbed parents who were uninvolved in their childrens' lives etc.  Part of what these guys are struggling with is how to create emotional closeness with their wives and kids, something they had virtually no training to do in their own families of origin.  We meet, we discuss how to get involved, things their wives can do to support their emotional involvement with the family etc. and then comes the hard part.  Practice.  It can be tedious, frustrating and the results can be slow to be seen - too slow for some.  What I'm encouraging these folks to remember is that it took years and years of "bad" emotional habits to result in their current patterns of emotional distancing.  So too it will take lots and lots of practice, gains and losses to create the emotional "muscle" memory of a new way of engaging in their relationship with their families. 

My encouragement  is to consider life a series of "training" opportunities.  Find a mentor, a coach, therapist, friend or trusted ally to help you polish and improve your emotional "style" of interacting.  Consider different strategies.  Try them, not just once or twice, but until you have some familiarity with them and then integrate whatever works into your emotional repertoire.  Work hard - as hard as you might work if you took tennis lessons, or as hard as you would support your kid to work if he or she took tennis lessons.  Create new emotional "muscle" memory to improve your game. 

What We Really Mean

I've been working with a lovely couple on long lingering marital issues and happened upon a scenario that I've been seeing a lot of lately.  One spouse  (in this case the husband) makes what appears to be a controlling request, one that seems a bit micro-manage-ish that results in the partner (in this case the wife) building up lots of resentments due to the very great efforts made by her behalf of the couple and family.  Being ignored, he resents her back and thus the cycle builds upon itself becoming ever more sticky.

It took a while, but ultimately we came to understand what the husband was really asking.  His complaints were not as much about his semi-superficial request as much as it was a request for her to acknowledge and validate his own efforts, struggles and successes made on behalf of the family.  Not really an unreasonable request.

How often is it that in the communication between couples we don't or can't take the time to understand what we're really asking, what we really mean when we make requests?  And how often do we seek to understand the deeper meaning of our partner when they make a request that we find to be unnecessary or even silly?

It can be a difficult communication exercise, whether with ourselves or with our partner, but one that is well worth it and that can bypass lots of resentments.  Remember, resentments can have a cancer like affect on relationships - just ask any recovering alcoholic or addict about how destructive resentments can be - they're the experts on this because failure for an addict or alcoholic in recovery so often leads to relapse.  That's how pernicious resentments are.  If a bit of time - even a lot of time can avoid such a destructive influence, isn't it worth it?

Cutting Tomatoes with a Sharp Knife

We've all done it, hoping the knife is sharp enough to give us nice thin pretty slices of tomato - and then we find out that it wasn't as sharp as we hoped and our tomato has been torn up and hacked into slices that are barely recognizable as food. 

I recently used that metaphor with a mom who was struggling with how to motivate (or consequence) her son who's "on the (autism) spectrum" re: his inappropriate, sometimes rude, other times oppositional verbalizations.  I said that I didn't think I could offer her any suggestions she hadn't already used - he's in his teens, so she had years of practice - as has he.  As a single mom who's a successful executive, she has lots of experience in motivating subordinates and understands that positive motivation is overwhelmingly more successful than consequences.  And yet her ability to motivate her son was less than, uh, sharp. 

So we reviewed some of the patterns she and her son have fallen into such as:

• her responding to his inappropriate and oppositional verbalizations, despite his lack of inappropriate/oppositional behavior.
• his inability, sometimes, to sit through church Sunday morning without disrupting the congregation
• his poor management of his personal hygiene (how well he brushes his teeth, how well he bathes himself etc.) 

Her responses to these very common challenges have been varied, as so often happens with parents of kids with any kind of behavioral challenge (whether they have autism spectrum disorders or not.)  She's tried positive reinforcement.  She's tried consequences.  She's tried fussing at him, ignoring him, even, I suspect, corporal punishment, all without lasting effect. 

We reviewed some of the basic lessons of behavioral management of kids, particularly kids on the spectrum.  The primary lesson is to keep it positive as much as possible - focus on reinforcing the appropriate behaviors before going to consequences.  For many reasons, beyond the scope of this entry, it is proven by behavioral science to be much more effective than using consequences - counter intuitive as that might seem (see below).  Thus, we discussed reinforcing him in church by having him taken out of the service early, before he misbehaves, and give him his preferred reinforcement (not surprisingly, electronic games.)  This way he is rewarded for what he has accomplished instead of pushing him beyond what he's able to do.  As he becomes accommodated to the regular reinforcement, it increases the likelihood that he'll behave better in church and the time he can sit without disruption will be able to be extended - slowly and deliberately - to the full length of the service. 

Now this mom has used such methods in the past, of course.  But she had not been using them in a way that kept the reinforcement "fresh" ("salient" is the word used in the professional literature) by making sure the reinforcement is actually preferred by him.  She also admits she's been inconsistent in utilizing positive reinforcement. 

These inconsistencies all "dull the knife" that we use to "slice the tomato" of creating an environment that is most likely to obtain behavioral compliance from kids.  I always recommend to folks to be very mindful of how they are using their language to "keep it positive."  Remember the management consultants who encourage managers to "catch them doing something right?"  The same is true for kids whether they have DD's or not.  Keep it positive when they're doing it "right" - especially when they don't seem to need it.  (See my past posting on "No News is Good News Parenting.")  When they're misbehaving, it is the parents' action, not the words that count.  If the child's doing something inappropriate, correct it with a minimal amount of discussion.  Avoid "Blah Blah Blah" parenting (think Charlie Brown's teacher who is represented in the cartoons by a trumpet's "wah wah.)  Keep the negative comments to a minimum.  There's plenty of time to discuss "proper behavior" later when you (the parent) are not so angry and when your child's less on the defensive. 

Focus on the positive.  Keep your parenting "knife" good and sharp. 

No News is Good News Parenting

Most of us were raised by what I call the "no news is good news" style of parenting.  This means that the kids go off to play and until a complaint or concern is raised that requires adult intervention.  In this model, it is assumed that the children are playing well, interacting appropriately and learning how to resolve any conflicts that arise.  And this is a reasonable approach for many, even most "NT" (neuro typical) population of children.  Social interactive play for children is natural.

Kids on the autistic spectrum, however, do not necessarily know how to spontaneously interact with their peers.  They will frequently isolate and avoid reciprocal social play (think of the "social reciprocity" required to play very simple "back and forth - your turn my turn" games.)  They may be very rigid and demand that the play follow their rules - and only their rules, which of course leads to their peers or siblings not wanting to play with them as much.  They may engage in self stimulatory behavior that does not lend itself to reciprocal interaction at all.  Their language skills may interfere with reciprocal play. 

This is why the "no news" method of parenting doesn't work for kids on the spectrum.  These kids, as well as their siblings and their peers will benefit from a much more active and interactive method of parenting that, basically, calls for play that is closely supervised and even facilitated, meaning that the adult is playing with the children, teaching the child on the spectrum the patterns of repeated behaviors that are play.  This is not really different from the play that parents and children naturally do, but will likely involve a lot more time and intensive focus.  And yes adults, it means getting on the floor, staying there, and learning, again and again, the beauty of, for example "Chutes and Ladders" (a personal favorite.)

Kids on the spectrum need this coaching and help to guide and pattern the subtleties of reciprocal play.  The progress may well be slow and tedious, but early patterning of age and developmentally appropriate play is a critical aspect of how children on the spectrum can learn more typical social interaction.

The tediousness of the work needed is not to be underestimated.  This is the reason that families of kids on the spectrum need all the support they can get.  Friends, relatives, neighbors should all be welcomed - even solicited to become involved and help play with the children - whether it is just the child on the spectrum with another adult/aide or whether that volunteer is "playing" with the child on the spectrum and other peers in order to pattern, structure, guide and troubleshoot the many potential pitfalls of reciprocal play that we so often take for granted. 

So, to all of you who were raised with the "No News is Good News" model of parenting who have kids on the spectrum, my apologies.

Welcome to Adulthood

Domestic violence.  Child abuse - sexual, physical.  Divorce (so sadly common.)  Drug and alcohol addiction.  Infidelity.  Suicide.  Every week I meet a new family that's struggling with one or more of these things.  And I'll state from the outset, these are middle and upper class families - let's not kid ourselves as to how rampant these issues are in our world.

The children suffer, always.  Both typical and special needs children are aware of these issues.  I see an adult with DD's who's struggling with his father's abuse of 20 years ago and a typically developing teen struggling with a parent's infidelity.  I found myself recently saying to one of the adolescents I work with: "welcome to adulthood."  He was understandably sad that his parents had divorced.  Depressed in fact, and understandably so.  I didn't know what else to say.  People divorce.  People are sick with addiction.  People make mistakes - grave and painful mistakes that effect their children for decades.  And all we can do is try to cope.

Coping is tough.  Easy to say - tough to accomplish.  Indeed so much of what we want for our children (and selves) is to learn how to cope with the challenges in front of us.  I just read and heard interviewed one of the survivors of the Boston Marathon bombing.  She lost a leg.  She sounded upbeat and positive.  She was coping, at least for the moment she was being interviewed.  She'll get support, one hopes, probably more support due to the fact that she was a victim of this particular terror.  The kids and adults who live with the stressors listed at the outset of this submission however so often have much less support. 

So, I'll continue to validate their pain, work on management - hopefully resolution of their anxiety and depression, their alcoholism and stress on their marriages and children.  And all too often, welcome their children to adulthood. 

Terrorism, Capitolism and "Parent Hygiene"

Whether a child has special needs or not - the issue of negotiations is a standard issue between children and parents.  We want our children to advocate for themselves and have a voice, we want them to articulate and we want them to learn that if they do things they get things - also known as the "if...then" principle.  "If" you do this, "then" you get that.

  All of this is normal and appropriate.  What we don't want is for them to get things before they do things.  That's terrorism.  It's terrorism (if you'll indulge the hyperbole) because if you get what you want without doing the work, the incentive to do the work is gone.  Once that happens, parents lose their authority and kids KNOW when this is the case and it so often ends bad.  It ends bad because a pattern develops, the dynamic repeated.  And even if the dynamic isn't repeated every time, if it is repeated intermittently, it's enough to keep the child on his or her toes that "maybe this time" I'll be able to get what I want before I do the work and encourages more terrorism - let me do X and then I'll do Y. 

Capitolism, on the other hand, is being paid for the job AFTER it's done.  This is, admittedly, the old fashioned way, but just like lots of old fashioned things, it works.  It works because, as we all know, it teaches that we have to EARN our rewards.  Tried and true.  The American Way. 

Too often parents play catch up after negotiating with terror and realize it way too late.  Thus, making sure we have good "parenting hygiene" is important.  I'm allocating the phrase parental hygiene from other sources, but the point is that consistency, having a routine planned way of conducting ones parenting methodology and, hardest of all, making sure your partner and you have similar rules and styles of parenting.  This is important not only for the parents, but for the kids who, after all, need - thrive - on consistency. 

As the parent, you have permission to take charge.  No regrets needed.  And remember - cleaning up your parenting act - the sooner the better - will help everyone!

S'wonderful....S'school!

Twice this week I've had wonderful experiences with our area's public schools.  Those who know me know that I can be, er, um, critical, so I thought it appropriate to note these great encounters:

I had a conference with a school and parents who are concerned about their student and child who has autism.  The specifics are much less important than was the openness of the school to create and implement a behavioral plan that would motivate the child in a positive way towards the goals that we had all agreed upon as important.  The school was well represented by the special educators and special ed administration as well by the principal.  They actively enlisted the help of other staff, confident that all the staff would be available to help.  It was a joy.

The other experience was regarding a pre-school child with autism and ADHD who can have a lot of oppositionality with adults, as these kids often do.  Mom showed me the daily schedule which could have been taken from a textbook on how to keep these guys on task.  It had activities and academics that were clear, timed and varied throughout the day.  No task lasted more than 20 minutes and transitions were a part of the curriculum.  Mom said the teacher was implementing it well and that her son was doing great in the classroom, unlike the previous public school placement he was in which was much less structured and resulted in a much greater amount of his disruption.  I haven't been this impressed with a pre-school intervention in 25 years.  Literally. 

My hats off to the schools and staff that put themselves out for the kids like this.  As to the other experiences I've had....well....we'll save that for another time.