Thursday, December 4, 2014

Learning Self Advocacy

(As with all discussions of clients, materiel changes to any identifying information are made for reasons of confidentiality.)

Tina is about 30 and has lots going for her.  She holds down a job, is pretty independent and can be very caring and considerate (when I was sitting awkwardly in my office dealing with some chronic back issues she'd reliably inquire - over the course of months - how my back was feeling.)  Tina has mild autism, mild cerebral palsy and mild cognitive delays.  She has great support, the result of her parents aggressive management of a system in Georgia that is often very difficult to negotiate.  And she has great staff helping her in her independent living program.

Tina had been living in a supportive living home through a local agency that does a good job at caring for adults with developmental disabilities.  Her core staff there was great, and over time as I worked with her, I found myself growing as close to her staff members who would accompany her into our meetings as I grew to her. (I often have caretakers/parents of adults with DD's come in the meetings, using a family therapy approach.  Happy to discuss the whys and wherefores of that if there's interest.)

So it was curious and concerning when she began some behaviors that jeopardized her placement with them.  The specific behaviors are besides the point, but she did things that were unacceptable and even dangerous.  There were meetings with the program administration.  Meetings with me, with her psychiatrist.  E-mails and phone calls were furiously exchanged between the program's administration, parents, myself, the psychiatrist etc.  We came up with theories, strategies, plans and contracts - all of which came to naught.

My own perspective was to review with Tina what she might be angry about.  So often when we misbehave (all of us, as far as I'm concerned) we're angry about something.  Tina was open to the possibility of being angry, but was unable to identify any cause or source of anger.  She was closely supervised by staff and an administration with a fine track record.  There's always the concerns about adults with DD's being sexually abused, but Tina was convincing that nothing like that had happened and there were no other reasons to suspect that as a cause.  We were mostly flummoxed about why - but we sure knew what - was happening. She was in trouble.

After not too long, Tina was asked to leave the placement she'd been in for years. It was understandable.  The agency was no longer able to guarantee her safety given her behaviors.  It was a crises that her family rose to quite well, mobilizing to obtain another placement for Tina that has worked out well.  Tina's parents, in particular, get the highest praise in my book for managing systems that are seen by many professionals and family members as unmanageable.

Tina and her staff continue to meet with me, generally for supportive therapy, sometimes with challenging issues, and we've gone merrily down our way dealing with what might be considered the mundane topics that adults with DD's struggle: personal hygiene, cleaning of her apartment, cooking, being willing to involve herself with social activities.  Standard stuff.

Somehow we recently stumbled on what happened a few years ago during that very tough time.  We discussed it - didn't come up with any specific conclusions, but just reviewed it.  Then something most significant happened.  One of Tina's primary staff members, Molly, continued the conversation with her after our session ended.  Molly, who knows Tina well, and was familiar with specifics of her last placement, offered a suggestion as to what Tina might have been dealing with during the time she was behaving so poorly.  Unlike in the past, Tina, in her matter of fact way, endorsed Molly's suggestion as to what had sparked her anger.  She was articulate, succinct and direct about what she didn't like in her old placement and how it had made her angry.  She was also able to point out the difference between what had been happening (nothing immoral, nothing illegal, nothing horrifying, just things that rubbed her the wrong way - things that she didn't know how to respond to appropriately) and what happens in her current placement that don't replicate what was happening before.

I took what seemed the obvious next step, which was to discuss with Tina the subject of "self advocacy."  She had heard the phrase and we spent some time defining it and discussing how, with Molly's help and the help of her other staff members, she'd been learning how to advocate for herself so she didn't get into the same jam she was in a few years back.  A lot of credit goes to her staff for their willingness, insight, dedication and persistence.  (Staff who work with people with DD's so often do so motivated by great love - it's certainly not for the money.  Many of them see it as their personal ministry.  My experience of them is heartening - I see them as models of love and dedication that most of us could learn from.)

It's taken time, but Tina's learning an important lesson about how to care for herself.  I'm really proud of her - and have told her so.  It's taken a while, but that seems to be Tina's pace.  With the proper supports, her pace is just fine.  


Wednesday, September 17, 2014

Acceptance: The First Step Towards Help

I was thinking about a close friend who has some, let's just say "issues" re: life. They are not issues of his own making, they are circumstances beyond his control, but they effect him very directly. And I was thinking about him, I realized that he's struggling to cope.  It's beginning to "get in the way."  He's avoiding certain topics.  It is impacting his social life because it's so hard to discuss anything without discussing the issue at hand.

A pause on "get in the way."  I frequently will ask my clients whether the issue at hand is "getting in the way."  If it's not, or if not too much, maybe it's not in need of a particularly therapeutic focus.  Maybe it's just an irritant, and don't we all become irritated!?  If it "gets in the way" we might have something important to discuss.

Back to my friend.  As I thought about how this issue not of his own making and beyond his control are "getting in the way" I also thought about a family I've been working with.  The couple has a teenager with a developmental disability (beyond their control, not of their own making) who has given them some pretty big behavioral challenges.  This teen's parents have risen to the occasion.  OK, not perfectly, after all, perfection is not really to be had in this world.  But they've done a great job.  Things have gotten better.  There are no delusions about their child's challenges - or their teen's strengths.  During the summer they took a vacation that was fun for them and fun for their teen - not always an easy task.  Compromises?  Sure.  But they know who their kid is.  They set their child up in this vacation and in school to have the best chance of success.  And it's not perfect, but they work hard and they understand the child's diagnosis and how to best manage his needs with theirs.

Oh yeah, my friend.  Well, he knows there are resources for him to go to where he might not feel so isolated, so alone with the circumstances that have befallen him. He knows of them, but is hesitant to use them.

Which got me thinking, what does it mean when we walk in whatever door that could help us - but are hesitant to do so?  The door to therapy to talk about depression; to a medical doctor to discuss the high blood pressure; to the attorney to actually make a will that insulates our loved ones from the difficulty of the decisions that are ours.  When we avoid doors, I think it's about our hesitance to accept the reality.  It's when we are able to put aside - even for a brief time - our minimization or denial of the issue.  It's when we consider that we might get/need help with the issue.  It's a hard step.  It's a step that can really change our lives, regardless of the door we're facing - or trying to not face.

And for the record, my "friend" is a melding of many many people, the family is not.

Does an Autism Diagnosis Always Matter?

As with all of my blog postings, materiel information about people is changed to protect their identity.

I received a call from a distraught mother yesterday.  Her son's psychiatrist, having known this kid for many years, offered (seemingly in frustration) that "maybe he should be tested for high functioning autism."  Mom was aghast.  Her son certainly had cause for depression - there are lots of stressors in the family that don't need to be enumerated here.  He may well have ADHD. The psychiatrist is treating for both, and that's fine.  He's a bright boy, and bright can be a blessing as well as a challenge.  He can be hard headed (not shocking for a smart young man who does well in regular education classes who is in early adolescence with some significant but not crippling family issues) but I'm not sure it makes for a diagnosis of high functioning autism (HFA).  It makes for a kid who's "behaving badly" in the words of Ross Greene, author of The Explosive Child.  If the boy even did have the diagnosis, which I'm quite sure he does not, as being hard headed and angry is way different from the rigidity that comes with classic autism, even HFA.  And even if he was very rigid, would we not look at anxiety first, since there are no stereotypic (repetitive) behaviors or significant social impairments in evidence?  It seems to me this off the cuff remark was someone who, at best, was thinking out loud and didn't have the "should I say that out loud" filter quite on tight enough.  I've certainly been there, so I can't be too critical on that front.  At worst, it is a reflection of the pathologizing of people who struggle.

And interestingly, the new DSM seems to, essentially, fudge together autistic diagnoses with one broad "Autistic Spectrum Disorder" brand with modifiers as to the need for more or less support, more or less impairment etc. which might be valuable for kids who are lower functioning, but I'm not so sure that it always matters for the very high functioning kids.

I saw a self referred law student a while back, certain he had Asperger's.  I didn't bother the schpiel informing him that the DSM had done away with that diagnosis, not wanting to pop any bubbles.  He was smart, doing well in school, was living with his girlfriend in a relationship that he described as working well. He admitted to worrying a lot.  I suggested he might have anxiety issues.  He was uninterested and went for another opinion and, no surprise, received a diagnosis of Asperger's.  NIMH states that almost 30% of adults will meet diagnostic criteria for anxiety in the course of their life.  This is in comparison with 2.3% of adults who will meet diagnostic criteria for autism, and that's according to the highest rate recorded, which could well be an over estimate of the incidence. Didn't we all learn that "when you hear hooves think horses not zebras" because horses are much more commonly found than are zebras?  I thought that was standard diagnostic practice.  Look at what's more likely, not what's trendy or intriguing.

With the young man whose psychiatrist suggested autism testing, maybe it was the lack of effectiveness of the anxiety/anti-depression medications that were being prescribed.  Not every kid responds so well, or so easily to medications. Why suggest autism testing and send mom into what seems an unnecessary tizzy when there are many other more obvious ways to understand his presentation? Why not look at the issues facing this guy, his strengths, his weaknesses, his family dynamics?  It seems to me the answers are not to be found in finding (or is it creating?) an autism diagnosis for this kid.

I'm not opposed to testing, nor am I opposed to diagnoses.  I refer for autism testing all the time and value my colleagues' input into how to best understand some kids.  Yet I'm also in some agreement with the new DSM trend towards describing individual issues and challenges.  But I'm becoming more interested in solving problems.  I'm not at all sure chasing after a diagnosis is always the smartest move.

Sunday, August 31, 2014

You "SHOULD" Feel

(As with all of these postings, critical facts and situations are blurred to protect client confidentiality.)

The fact of the bitter divorce that leaves the parents struggling to be civil to one another in public or private isn't the issue.  The fact that they are continually in court with one another really isn't the issue either.  And being in court a lot requires a lot of determination, anger, bad luck and mostly lots of money, but none of those things seem to fit as a cause.  I could look at the stress of mom's "family of origin" issues - that she was raised in a critical home where despite her intelligence and accomplishments she was never good enough.  But I can't see how that accounts for what I think is just her unwillingness or maybe its inability to accept reality.  I think mom just has not sat down to deeply consider what autism means to her son.  

Mom's upcoming marriage looms broadly on her high functioning autistic son's horizon.  Daniel is 12 and continues to mourn the divorce, struggles with having to shuttle between two homes, one in which dad is happily remarried and his "primary" residence where mom, who never seems happy, but always is in control, has bestowed upon Daniel the high honor of being in the wedding party at mom's upcoming nuptials.   Daniel has been clear from the beginning, he doesn't want the honor.  He is conflicted, about the divorce and is just trying to digest what another marriage means, what kind of relationships he'll have with new step siblings who will now to be present in both places he's forced to call home. Daniel is simply frustrated with his mother's struggles to understand his needs, and his deteriorating behavior increasingly shows it.  

Daniel's autism leaves him with a finite repertoire of emotional options.  On good days he has a hard time managing the demands of his daily schedule, the very expensive private school his parents agree is best for him, extra curricular activities that have been pared down so he can cope with the stress of life better. An now mom's telling him how he should feel to be a part of her wedding party. On good days - and he's had them, Daniel is able to cope pretty well, with the understanding that he needs time outs - which he's learning to self prescribe - and with the help of medications to ease his anxiety.  Additional stresses leave him emotionally and behaviorally spiraling down.  And that's where he's at now.    

Which is not to say that mom doesn't deserve her conjugal happiness, everyone does.  What mom has, and continues to find difficult is that Daniel has, well, a disability.  At best, he has what Ross Greene, author of The Explosive Child describes as "lagging skills" in coping with the flood of emotions he faces with his mother's wedding.  Daniel states, with some, but not perfect clarity, that he is unprepared to face the attention, the sensory flood of faces, noises, smells, activity and the attention that comes with walking down the aisle.  Mom thinks he should be honored.  

Dad understands Daniel's plight but is stuck between a rock and a hard place.  If he encourages mom to give Daniel some room, an "out" from this role to which he should be honored to fill, he is meddling in mom's so special day.  He is expressing his jealousy of mom's moving on.  He is accused of trying to turn Daniel against his mother, and fostering resentment for all that she does for him day in and day out.  Dad is in a no win situation.  

And I?  The therapist?  I'm in a bit of a tight bind as well.  Mom comes faithfully to our sessions with Daniel, but has a very hard time with feedback, regardless of how softly it is presented.  She's declined the individual sessions offered to assist in her "coping" and increase her understanding of kids on the spectrum - she's read the booksthankyouverymuch.  I've told her directly that Daniel's hesitance to participate in her wedding IS how he feels.  She responds by telling him he SHOULD feel honored to participate, even though this is besides the point.  If I had a nickle for how much in the world "SHOULD" be different......I fear mom's needs to save face with her family, friends and community will outweigh her ability to be sensitive to her son's needs.

One of the most important lessons a therapist learns is to "accept the client where the client is."  Daniel's mom is in a place where her needs outweigh his.  I have to accept it, even though I see the hurt in it.  I continue to be available and suggest that she's not really getting his point of view, but that's not "where she is" right now.   

As Daniel's behavior continues to deteriorate in the weeks coming up to the wedding, I can only try to support Daniel, to pry mom's resistance to seeing who Daniel actually is as opposed to who she would like him to be.  I just hope the wedding doesn't end up with a major embarrassing meltdown that ends up in another round of "shoulds" for him. 

Sometimes things are just sad.  And hard.  My heart aches for Daniel.    

Thursday, August 7, 2014

Finding Her Voice

(Note: As with all of these discussions, materiel changes have been made to the descriptions of the people being discussed in order to maintain strict privacy in accordance with all HIPPA and professional standards.)

When I met Nikki she had just been discharged from a local psychiatric hospital having experienced serious thoughts of suicide.  She was a pretty, but clearly sad 16 year old young woman who admitted she had been struggling with depression for a number of months with more recent thoughts of killing herself.  Her parents were concerned, available and admitted that they both came from families that were chaotic, distanced, and organized with lots of guilt as motivators.  Nikki's parents were in their first marriage, having met in a self help group.  I thought their mutual sensitivity a good sign  They were appropriately concerned about their daughter's welfare and the frightening seriousness she had given to suicide.

In the course of the year that followed I have grown very fond of Nikki and her parents.  We've explored both mom's and dad's families of origin, including one of Nikki's grandparent's financial boom and bust, leaving mom's family virtually desolate at the time of her father's (Nikki's maternal grandfather's) death.  The issues of betrayal and rage that Nikki's mom grew up with were quite significant.

Nikki's dad also came from an emotionally challenging history, his parents having divorced and remarried to step parents with whom dad was cordial.  Dad, however, was often caught in the ongoing friction between his biological parents that continued 30 years after the divorce.  Nikki's parents willingly began coming for couple's sessions as well to deal with Nikki's hospitalization - a watershed event in their lives and with the family of origin challenges both brought to this marriage.

Nikki is a smart young woman and despite struggling mightily with her academics in the wake of time missed during her hospitalization and struggles with depression, she pulled out a very strong academic year.  With a lot of support she asked for and received some latitude from her HS re: completing some assignments late.  And yet, despite the accomplishments, she still struggled with feeling just OK (good was too high a bar) about her very significant accomplishments.

In addition to her academic strengths, she was very involved in sports spending many hours pursuing her expertise in gymnastics.  She knew she was not destined for the Olympics and she was OK with that.  But she enjoyed it and took her training and commitment to her team, coaches as well as her parents efforts on her behalf quite seriously.  So when training resumed after a successful summer for the upcoming season, she resigned herself to the many hours per week required for training.  But she worried.

Nikki was good at worrying and continued to struggle with just being happy despite her many strengths and accomplishments.  So recently when she came in and voiced her concern about the upcoming academic load facing her, including a couple of AP classes, we began to explore what her motivation was to continue with gymnastics.  She admitted it felt good to stay in shape, but added that there were certainly other ways to stay in shape that didn't require the degree of training and time that she had committed to. She hated to think that she'd be wasting the money her parents had already spent for her training and coaching.  Her mom had been a pretty good gymnast when she was in high school and Nikki knew her parents both valued her extra curricular efforts.  She worried about her "resume" for college, and that leaving gymnastics would take away from her chances for acceptance to a good college. (I'll spare you my rant about the pressure HS kids have these days, but trust me, I've got one.)  She didn't want to let her coaches down who had been so supportive of her during her struggles last year.  She had every reason to continue except her own desire to do so.  Her motivation to continue was all based on factors other than her own.  The theme of guilt ran strong as a motivator for her.  She didn't know how she'd fit all of the needed time into the day or week to address both her academic and extra curricular load.

So I asked her what it would be like to consider dropping gymnastics - which she toyed with last year - again with her parents to see what their response would be. Communicating her concerns about how many hours there were in a day seemed a reasonable thing for her to do with them.  They were supportive, concerned, available and she didn't have the seething resentment of her parents that some adolescents develop.  She knew they were on her side, she just didn't want to disappoint them.  She was unsure how to proceed.

In our next session, almost a year since her suicidal thoughts had taken root, Nikki came in and hesitantly but with confidence said she had finished with gymnastics. She spoke to her folks and to her coach and all were supportive of her.  Never one for excitement or overstatement, I asked her how it felt and she said "OK."

"OK?, Not 'good?'" I asked.  She let a small smile out and admitted that it was better than just OK.  And then we talked about the role of guilt, the dangers of doing something for someone else's needs without doing it for one's own needs, and the importance of knowing when we were asking too much of ourselves. Nikki's confidence in herself is beginning to bloom.  I suggested to her that she'd turned a corner in comparison to where she was a year ago when she didn't know how to communicate her needs and her parents were unsure what to listen to, or how hard to push her.  She agreed, things were indeed different.  So many of the things she worried about just hadn't come about.  Her parents, her coach, all supported her decision to discontinue her athletics.  I cautioned her in her fear of disappointing one of her teachers - she was changing out of one of the teacher's classes, but didn't want the teacher to feel bad.  I suggested this was the virtually the same issue we'd been discussing - worrying about others' feelings instead of balancing her own needs.  I could see the lights go on.  She's learning how to find her voice, and I'm so proud of her.




Sunday, July 13, 2014

Summer Reading, Eye Contact and Collaboration

Having 20 some years working with kids on the spectrum, I'm pretty much used to it all and have probably become a bit too jaded.  I recently went through a training with Ross Greene, you likely know of him, he wrote The Explosive Child which has been such a popular book for so many parents.  I went with minimal expectations having been through 32 years of continuing education and finding much of it to be minimally informative and rarely inspiring.  This was different.

Greene's focus is on Collaborative and Proactive Solutions (formerly Collaborative Problem Solving - it's a long story....)  One aspect of CPS Greene focuses on building the relationship with the child, a skill he quickly wants parents to learn so they can do what they need to with their kids without therapy.  There is a lot more to it and I plan to continue my study of CPS, but a couple of salient moments have already borne fruit in my sessions this week.

One HFA (high functioning autism) child and his mother came in with a(nother) fight, this one about his summer reading.  I put on my best Greene hat and delved into emphatically trying to hear, just hear and thus validate, "what's up" for him.  It was hard for him, and for me a bit.  Greene is clear that drilling down to a specific, a very specific problem is quite important.  So I drilled for specificity and the boy hung in there, squirming and citing his being "tired and hungry."  But we perservered and came up with a collaborative plan that I wasn't too sure of.  The next day I received a thankful text from mom stating that the boy had that night forged through what he said he would do within the next week.
Mom, who had already been through the book and Greene's DVD's with marginal success said she'd have to "reconsider" this whole "collaborative" thing in a more positive light.

So far so good.

I later met with a family new to me.  Another HFA child who could say little in response to my most doggedly "Greene" like questioning except "I'm confused."  He was a kid with classic lack of eye contact that so many HFA folks have.  Even though I was sitting 3 feet from him, tried to engage him with some of my notoriously bad humor (it's a great measure of where a kid's at - an eye roll or smirk can reveal a lot, but on this guy it went nowhere), he stared almost exclusively straight ahead avoiding making any but the most glancing eye contact.  So I went with "confused."  That's what Greene said to do, so I did it.  We were discussing it for a while, making what seemed like no great headway and then something quite odd happened.  He turned and gazed at me. Square on, right in the eyes, for a long time and held my gaze as I again said "So you're feeling confused..." to my many questions.  At that moment it seemed to go beyond eye contact.  It was human contact.  A visual confirmation that a relationship was building.  Now I'm not going to start down "the CPS solves cancer" route, but for a HFA kid to just engage me visually like that is pretty significant. I'm used to these kids not visually engaging me at all. Ever.

So, if you see me, prepare for more.  Re-read the book.  I'll help you with the rest.


Monday, June 23, 2014

With and Without TV and Marital Happiness.

We don't have a TV in our home.  We did, but given work schedules and our viewing preferences, we canceled it and saved the money.  Netflix gives me all I need.  So I'm generally immune from the advertising that rules the airwaves.  Until I travel.

So recently when I was at a conference I tuned it, caught up on World Cup play, which is thankfully commercial free, and then tuned in to a "world premiere" of a show I had seen advertised - at a movie no less.  It had all the compelling aspects of shows I like.  Action, military, science etc.  The cost of watching it was re-entry into the world of commercial expectations.  Boy do we have expectations.

In one car commercial, sequences of horribly damaged cars were accompanied by the statement "They lived."  Wow.  So now, regardless of how horribly I crash, I should have the expectation of living through it.  And another commercial, also for a car, I learned that no matter how distracted I am, my car can and should correct for my mistakes.  Veer too much from my lane, it informs me.  Approach a vehicle in front of me too fast, it brakes for me.

Now I'm not opposed to smart(er) cars, just like I'm not opposed to smart(er) phones or computers.  I am concerned that expectations of our own responsibility is being shaped to decrease our sense of self and relationship with the world.

Interestingly, I read an article recently about divorces in later life, after 20+ years of marriage.  One of the professionals interviewed opined that the increase in divorce of this population is due to the increased frequency of people's expectations being raised about how much they deserve, how much they "should" get from life.  This seems to be a (natural?) expansion of the selling of sex that has accompanied advertising for at 150 years.  Google "Pearl Tobacco" if you need proof.  I don't think even then that anyone would have actually thought that smoking a Pearl would cause naked women to approach.  But the claims seem to have gone so much further now.  Horrible auto crashes should be, not could be survived.  Irresponsible driving should be intercepted by our machines.  We don't need to be responsible any more.

I hope I'm not the only one who has a problem with that line of thinking.

Monday, June 9, 2014

Mom Gets a Sticker or Teaching Johnny to Swim.

So much of the work that I do with kids is centered on parents.  A recent case in point is a mom of a precocious 1st grade boy who had been nervous about learning new things like learning how to swim, hesitance to learn to ride a bike, even spending time with other kids his age.

He was a cute kid, precocious, as I said, easily engaged in talk and play.  Grades were good, behavior was OK.  So.....what about that anxiety?

Well, as family therapists are wont to do, I began to explore the family of origin.  Mom admitted that she was raised under a specter of "danger."  Everything had a dangerous side to it.  Really dangerous. This sense of danger was reinforced by a tragic nonfatal accident that one of her father's nephews had suffered as a young adult.  Thus grandpa held his breath whenever this little boy did...well...just about anything.  And of course grandpa lived close, transmitting his anxiety in a potent and frequent way to both his daughter and grandson. And of course mom felt great responsibility to not heighten her father's anxiety.  So, it follows that mom held her breath - loudly -whenever her little boy attempted to do those things that are normal for little boys to do.  He learned, in turn, to hesitate a bit, in deference to his mother's anxiety on behalf of her father.  You get the picture.  Thus, we have a recipe for a child with anxiety.  Kind of.

I recall so clearly that at the end of the first meeting mom anxiously sat forward on her seat and asked, tears forming and beginning to roll down her cheek, if there was "hope" for her beloved son.  I wasn't sure what she really meant.  Sure there was hope, I responded, curious why she was so concerned.  The tears of relief flowed as I used one of my favorite lines: "I'm not going to lose sleep about you or your son this weekend."  I did not predict horrible things in the life of her son.  (As if we have crystal balls through which we can predict all coming events!)

Mom quickly came to understand the dilemma she created in transferring anxiety "down the generational line" from her father to her to her son.  The solution was pretty straightforward, as mom now admits. The first thing mom agreed to do was to check her own anxiety at the door.  Family therapy theory discusses pushing the dysfunction "up" the generational ladder.  She, not her father was the parent of this boy.  She knows kids need to learn how to swim, bike etc. despite her father's trauma with his nephew.  But how to reverse the tide?  The answer was a simple behavioral intervention - understanding what was "reinforcing" to her son.

She said she'd tried lots of rewards to motivate him to participate in activities about which she had been giving big mixed messages.  She signed him up for swim lessons, and he, in perfect form, cried about swimming.  He had a bike, but was afraid to learn to ride it.  Motivations?  Stickers failed.  Food (often a dangerous reinforcement, but not universally) was not a first choice as her son was already large for his age.  So I asked him - what would HE like to get if he participated in the upcoming swim lessons He drew a blank.  It's better if kids of almost any age come up with their own reinforcement when trying to get them to participate in something.  This was about developing or increasing a new behavior, not inhibiting a "maladaptive" behavior.  But when a child is a bit on the shy side, I'll toss out some of the tried and true options.

So I went fishing - it didn't take long.  Stickers were out, TV and video games were appropriately limited by mom, so I was hesitant to go there.  Food?  Nope.  Going to the pool is a great reinforcement for some kids, but not this one, not yet.  Extra "play dates" with peers can be a good draw, but this boy has a record of being a bit shy.  How about staying up a bit late after participating in the swim lesson?  His eyes lit up.  Bingo.

Mom was game, and in 2 weeks the report was perfect.  He not only had participated in the swim lesson but was now swimming on his own, head in the water and on those days he did so, mom or dad stayed up with him an extra half hour - an easy accommodation during summer break.  The reinforcement combined two most powerful reinforcers: staying up late, a sign of maturity, growth and responsibility, and parent attention during that extra half hour.  Parents were aware that they needed to begin to wean the "reinforcement" pretty quickly which they had spontaneously begun to do - once he was swimming. We discussed that "reinforcements" are establishing an economic model.  Now as my son the economist will tell you, I know diddly about economics.  But I know enough to know that parents are the rulers of economics with children.   Reinforcements can be established, changed or cancelled, as the situation demanded.  These parents understood that there is no need to waste a working reinforcement when a behavioral goal (swimming) is established.  Save it for other goals.  Mom continues to be aware that the anxiety specter loomed, but was working hard at keeping her goal on the child's needs, not her father's anxiety.  That'll be a work in progress that we can address as needed.

Mom's still nervous about her dad's anxiety, but is giving a strong signal to her son of what is of real value.  The bike's next.  The shyness?  Who knows where that will end up?  Mom?  She got a sticker and her son didn't even want one.

Tuesday, May 27, 2014

Turning Corners in Therapy, Diagnostic, Historic and Dynamic

I'll call him Mike.  He's 18, finishing HS and came to see me with a diagnosis of Asperger's disorder (or, per our new DSM, High Functioning Autistic Spectrum Disorder, HFA for short) and never quite fit the bill.  Or did he?  He was the ever logical thinker.  Feelings were always framed in thoughts.  He would sometimes get angry and would always justify and rationalize it.  He had a utilitarian view of school - if a class appealed to him, he'd participate and do well.  If it didn't, he would all but ignore it.  Relationships with peers, family were always distant, strained and his participation was based on his logical deduction of its need. Lots of HFA characteristics.

He comes from a normal suburban Atlanta family.  Mom was in her second marriage, but the couple had been married for 20 years and seemed to have nothing more than their own brand of normal ups and downs of 20 years of raising kids - Mike, with HFA (and ADHD, of course, so frequently found in kids with any developmental difference) but did OK together.  His sibs, older and younger, were all pursuing their individual lives.  Finances were OK.  No drug or alcohol problems.  No "systemic" family issues which us family therapists love to ferret out.

So Mike and I began to meet and talk, the "chief complaint" being his anger, compliance with school etc.  When we began to meet 1 1/2 years ago he had been suspended for his arguing, stridently, with a teacher.  Over time we met weekly at first, and then as things calmed, less frequently.  We discussed his academic prowess - science was really his thing.  Science covered everything.  Science could account for virtually every aspect of life's challenges and choices.  And when science failed, math could be substituted.  Yeah, Aspie - ish.  It was the "ish" that continued to nag at me.

Also consistent with the diagnoses were the behavioral problems in school as well as his lack of emotional regulation.  At one point had thoughts of suicide that landed him in a local psychiatric hospital.  Very Aspie.  Happens all the time.

We spent time reviewing his relationships with his family.  Standard family therapy practice, sometimes including his parents.  Lots of time was spent reviewing his relationships with his siblings, parents, communication styles.  Suggestions and strategies.  And of course, the (dreaded) obsession with video games.

Most of our time was spent strategizing how he could best approach the academics he did not enjoy. He's so smart that I (and his parents) felt this to be a very critical concern.  While his logic was great, it seemed to fail re: the importance of passing Spanish, a requirement for his graduation.  Aspie.  He was very critical of certain teachers, scoffed at the uselessness of certain assignments.  All the classic things these guys can get hung up on.  His high level of intelligence, sometimes well engaged, sometimes not made it all the more frustrating to his parents (yes, and to me.)

We slogged through some of the computer based classes he had to take to make up incomplete work - and then, surprisingly,wonderfully, things began to turn around.  His work was getting done, his attitude better (relatively, of course.)  What happened?

I'll call her Jane, a lovely young lady - Mike even brought her for some of the sessions.  She had her own story, parents divorced, one of them chronically ill, but most importantly similar interest in Mike's interests, scientific and video.  She's also a bit of a STEM (science technology engineering and math) kind of a kid as well, but with a smile and lots more emotional availability than Mike.

As Mike's progress in school continued as did his relationship with Jane, I broached the subject of birth control, as I do with most any late adolescent who's dating, spectrum or not.  Mike reverted to a typical HFA stance:  He didn't think sex was necessary or appropriate at this time.  He thought they could cuddle, make out maybe, but he was not at all interested in sexual contact, even though Jane was. Well that did it for me. What NT (neuro-typical) boy in his late teens (who was quite clear that he was straight) would ever pass on sex with an available, attractive, of age girlfriend.  One who WANTED to have sex, but was respecting his desire to not.  Only an Aspie. Only an Aspie.    It fit perfectly - some, but not too much intimacy - more than many Aspies I work with.  Avoidance, perhaps of the massive tactile stimulation that sexual relations entails.  I was surrendering to the HFA diagnosis despite this ongoing clinical itch that something...something....but what....was different about him.

And on we went.  Just a few more make up classes in the arts (not sciences!) for him to finish before HS graduation.  College acceptance in the bag, he and Jane would be attending the same local school and discussed rooming together (asexually?)  Maybe this began to make more sense after his parents found them in a compromised position in their den. Maybe he decided to have sex after all.  Maybe there was more....

And then he casually mentioned how his older step brother sexually molested him for a couple of years when he was younger.  Matter of fact.  Just like that.  After 18 months of therapy, there it was. The molestation had gone on for 2 years and he said he had told his folks - thought he had told me. Just another piece of data to share - true to style.  No biggie.  Just letting you know.

How did it start?  The brother was older and demanded Mike have sexual contact with him.  Not an uncommon occurrence, sad as it is.  We discussed how an unequal balance of power is a way of understanding sexual abuse.  That once his brother's authority over Mike was established the sexual demands increased.  How did it stop?  Mike simply said "no" a couple of years later.  He's a strong willed  kid, so I can see that.  Why did he wait till now to discuss this?  The brother - with whom he's understandably had a very hostile relationship since the abuse stopped, had already left home to work. All Mike wanted at this point was to live and let live - we'll see if that sticks. Not talking about abuse is common. We'll also see what other questions come up - I know I have a zillion of them.

And what of Jane?  He shared with me that a week earlier he had "taken her virginity."  "Taken?"  I reviewed with him that she is the one who'd been waiting for him to have sex, not the other way around. He didn't "take" anything.  It was offered freely and willingly.

And I realized, finally, that we weren't dealing with Autism, we were dealing with a kid who'd been sexually abused, who tried to cope with the pain, shame and isolation that children who've been sexually abused carry, and that it looked like a kid with high functioning autism.  His reaction to being abused was to became rigid, controlling, angry - at one point I thought he was psychotic (viewing the chair in the room as a combination of mathematical and scientific formula.)  Same kid, different history, different dynamic and different diagnostic formulation.

We discussed virginity.  In his organized, intelligent and thoughtful fashion, he shared his confusion.   Mike's virginity had been taken from him by a bully, a member of the family, just a few years older than he forced sexual contact.  Mike had been raped.  He didn't use the word, maybe didn't even see himself as a victim of rape, but that's what it was.  The emotional effect for him is the same as for any victim of sexual abuse. This is why he didn't want to sleep with Jane - he feared hurting her as he had been hurt. Fearing that sex was an act of taking and not one of mutual giving.  This is what fueled Mike's best coping tool - his intelligence, making him look much more Aspie.  He's a smart kid - it makes perfect sense now.  As we discussed these issues he teared up, beautifully, believably.  He had responded to his emotional hurt by restricting his relationships with others - the better to stay safe from other emotional hurts.  That's not HFA.  As I thought about it, I realized that what happened to Mike caused him to react in a way that led to a classic misdiagnosis,

Mike may well have ADHD, I think it'll take a bit of time for this to be seen, given his decision to discuss his trauma.  He would think, think, think to try to cope with reality.  In a variety of ways that's served him well - I think he'll do great in college.  But that can also look like a rigid hyper intellectual presence that is typical of HFA's.

The most important lesson we can learn from Mike would be the importance of enduring therapeutic relationships.  It's been many years since managed care began its clamp down on out patient visits.  I've always been very mixed about their role.  A part of me hates them and their nosiness into our business (and finances!) Another part of me believes that clinicians support people's financial reality by accepting their insurance, and thus it becomes a necessary evil.  I'm not prepared to take on national public health policy.  As a therapist who believes strongly in the "use of self" and the value of the therapeutic relationship, what Mike has done after a year and a half of therapy makes perfect sense.  He needed time.  Simply.  He needed time to trust.  He needed time to grow, time to find some distance away from the abuse, away from the perpetrator he was forced to live with for years.  He needed time to understand his own strength, his sexuality, time that Jane beautifully provided for him.  He needed time to deal with the seething anger that sexual abuse survivors so often have - another symptom that is often evident in HFA kids and in his case mis-interpreted.

Towards the end of the session Mike brought up a new video game he was mastering.  He played some clips from the website and pointed out that this particular game defined his experience well.  It was a game in which the hero figure would suffer, repeatedly, against the evil foe.  But unlike lots of the video games these setbacks didn't really end the game, they just allowed the hero to learn how to better cope, how to better address the enemy so they could survive and find whatever holy grail that game provided. It allowed Mike to symbolically play out his own journey where he could learn, master and grow.  And so he will continue.

Thursday, April 10, 2014

Wounded Children

Is there anything worse than wounding a child?  There are more people than we know, those with autism, other Developmental Disabilities and those who are "neuro-typical" (NT's) who have been hurt as children and their wounds can often last forever.

A mother who struggles to escape the patterns inflicted by an emotionally and physically abusive father.  A young adult with High Functioning Autism who begins to perseverate on a specific type of on-line pornography who was known to have been sexually abused in that fashion prior to being adopted.  An engaging, very smart NT 14 year old now being raised by relatives who was raised for his first 10 years by drug addicted parents who now copes by "not caring about anything" except his education and friends.  An adult NT woman haunted by memories of her brother's sexual abuse of her.  Another adult NT woman who can barely say out loud the word "sex" due to the abuse she is terrified to articulate.  Every therapist has heard these stories.  And these are the very overt kinds of abuse, not even including the "sub-clinical" emotional abuse that is so difficult to measure that kids endure, particularly those with DD's who can be so very challenging to manage.

The heartbreak of these wounds is how chronic they are, how deep they are and how pervasively they can effect relationships and behaviors.

Kids with DD's are 4 to 5 times more hurt by sexual and physical abuse than NT kids, but DD kids are so often unable to self report or easily influenced to not report.  While we know of over 566,000 confirmed reports of abuse in 2012, we have no good way to estimate how many of these kids have developmental disabilities (those statistics aren't recorded) and given the lack of reporting, we really can't easily estimate the number of DD kids who are abused or neglected each year.  If you do want to imagine, think big.

We certainly have to look at the individuals who abuse.  Having a child is such a deep responsibility, and yet so common, so easy to accomplish and so taken for granted in our society where a child born into a 2 parent household is less and less frequent.  Where we know the increased risk of abuse in single parent homes, either by the primary caretaker, their partners or others is sky high.  And we know that those who have been abused are more likely to repeat the pattern, forcing us to mix our disdain for the abuser and compassion for the abused.

How do we support parents who are at risk of abusing their kids, particularly those with DD kids? The social policy questions are all but unanswerable:  Do subsidies for childcare or food stamps increase the rates of single parenthood? Do SSI payments to families of kids with DD's somehow "enable" them?  (For the record, I don't think so, but there are lots who do.)   Does it help to educate teens about birth control (teen mothers are much more likely to have kids with DD's due to a variety of factors)?

Volumes can be discussed about this topic, from the macro level of social policy to the micro level of the next client I have who is hurt.  All I know is that the wounds run deep, and sometimes leave scars that interfere with the core of intimacy and can take a lifetime of coping.


Wednesday, April 2, 2014

Let The (Blame) Games Begin! (or Past vs Future)

It goes without saying that families with kids with autism and other DD's are stressed.  Really really stressed.  Stressed to the point that it can challenge the marriage, challenge one's own sanity.  If you have a kid with DD's, you know what I mean.

I've seen couples so burdened by this stress that they engage in an ongoing war of blame.  This is true of those who remain married as well as those who are divorced.  This can result in a great deal of mudslinging, particularly about what happened in the past.  Past hurts and pain can reign supreme in relationships. And we tend to spend a lot of time looking at and reviewing what happened.  It's a way of understanding, digesting at a deep level the course of the history.

Indeed, retrospection is a classic aspect to family and couples therapy.  We examine the family of origin.  What was the nature of the marriage in the family you came from?  What was the balance of parental power in the family you came from?  Were there unhealthy alignments between parent and child?  How did the parents manage their own conflicts?  Did they agree on parenting strategies? Were they close? Affectionate? How did you and your (ex) spouse meet?  What drew you to one another?  Is your marriage similar or different to that of your parents'?  There are innumerable questions we ask in hindsight to understand what the patterns might have been that brought us to our current situation.

And yet......sometimes couples become mired down in what happened and it turns into a blame game that devolves into what seems a game to the death (hence my reference to Hunger Games.)  It is cruel to do, hurtful to see and potentially devastating to children who witness it.

I admit, I've become drawn into the blame game as a therapist.  Trying to sort out who did what when and to whom as a way of trying to create some clarity between the parties.  It's hard work and often not successful.  So recently, when observing a couple playing this most hurtful game, I considered something different.  Let's look to the future. Slogging in the mud of yesterday is so often unproductive.  What about considering what I plan to do tomorrow when we have a problem?  What can I do to change the atmosphere of the relationship? How can I help create a new narrative in our communication style and how we resolve conflict?

Looking to the future is as important as looking at the past.  We do learn from our history.  We also benefit from creating a plan for change and monitoring how and whether that plan is working.  Ed Koch, former mayor of New York City was famous for asking New Yorkers "How'm I doin'?"  He wanted feedback both on what happened and used that to change how he conducted himself in the future.  More of this kind of marital questioning is in order for those couples mired down in the blame game.  Let the (future) games begin!

Thursday, March 6, 2014

Marital Sex Love and Affection and Couples with Autistic Children (or Marital Hygiene)

When I was in training with Peter Fleming, he presented on the topic of "Sex, Love and Affection" and its affect on couples.  The definitions of these 3 components of relationships is pretty simple:  Sex is....well you know that.  Love is the feeling of connection we have to one another.  The best definition of love that I have heard is the relationship I'm in that makes want to be the best "me" I can and the relationship that inspires me to grow and commit.  See Romeo and Juliet for a broader description.  Affection is the physical touch - non sexual - that we exchange as a way of comforting and being comforted physically.  It can be as gentle as a light touch on the shoulder or as strong as a deep embrace.  These are the components of a relationship that help it endure over time.

With one exception:  communication.  Yup, that same old boring topic that gets beat to death when discussing relationships.  But Fleming notes a significant aspect of communication in the weave of sex, love and affection.  He posits with great insight, I believe, that a relationship with strong communication can endure a lack of love, a lack of affection and even, gasp, a lack of sex.  How? Communication bridges the challenges that we face in the lack of sex, love and affection.  Surely, the early part of relationships include great amounts of all 3 of these components, as well as communication.  That's how lasting relationships are built. The absence of any of these aspects does not make for a relationship that can survive the vicissitudes of life.  Hard, direct, compassionate communication (these are not conflicting) is a requirement for relationships that are to survive, even if sex, love and affection are all present.  Can you imagine a relationship with these 3 components without a strong foundation of communication?  Hardly.

Consider, then, marriage in the context of a child with autism or any other special need.  Families under these pressures struggle just to make all the appointments needed.  There's medical doctors, mental health appointments, medication checks, special ed meetings, social skills groups, PT, OT, Speech, hippotherapy, athletic activities, all in the name of helping the child with special needs cope as much as possible with the realities of the world.  And this doesn't include any efforts on behalf of other children not to mention the needs we have individually to care for ones self.  And did I mention laundry?  Dinner?  Getting the dog to the vet?  How about getting the oil changed in the car?  What about working late on a special project?

How often do parents without special needs kids collapse into bed at night, the last thought on their mind being physical intimacy.  How much more-so, then, will this be the case for parents of children with special needs?

One of the barometers (but hardly the only one) that I measure couples by is their capacity to retain their intimate lives.  It's not uncommon for folks to say that they have to "schedule" private time together - most couples with children understand that.  It is also common for me to interview a couple about their kid/s and stumble on the lack of intimacy their relationship has maintained.  Couples who have sex every few months, once or twice a year or even less often acknowledge that this is the result of the slow wear and tear of the many challenges of being a parent presents to couples. Overwhelmingly this occurs without the benefit of the hard, honest communication that is needed in relationships.  More frequently it's just bad habit.  I might call it poor marital hygiene.  This can be true for couples with typical children, and couples with special needs children are even more vulnerable to this.  What often comes with this is a susceptibility to extra marital relationships.  They can be comparatively easy - if poisonous to the marriage.

Fleming teaches that "saying the hardest thing" is a sign of good communication.  Is there any better place than a marriage to communicate so actively?  I will propose that couples that have learned how to communicate (which includes listening) the hardest thing have really good marital hygiene, and can survive challenges to sex, love and affection that affects many couples through the years.

Wednesday, January 29, 2014

Role Models

Some folks are just born to do this stuff - I mean the parent stuff.  I recently met with a teenager with developmental disabilities and the father.  The teen had gotten in "trouble" at school (I use quotes as this is one of the times that I think the "trouble" the child got into was due to the school's cutting corners in addressing the child's needs) and the father impressed me.  He really impressed me.

The father's demeanor was simple.  He was an adult.  No shaming "you should have known better" statements (though there might have been room for such a comment.)  No angry outbursts (though the child's behaviors did result in an ER visit which was more noteworthy for the inconvenience - and parental concern than his medical condition, the child was fine.) No sarcasm.  No exasperation on dad's part.  Just pure, thoughtful and calm "adult."  Dad discussed, he reflected, he commented, he listened.  He maintained a calm voice and demeanor.  Dad knew who his audience was and spoke accordingly.  The result?  The teen listened.  Now I (and I dare say the parents) don't think this will be the last jam this teen gets into.  But the teen was not turned off, shamed or embarrassed.  The respect given was critical to maintaining the relationship between parent and child.  

I've seen these parents  before and it's so refreshing.  And this is hard to accomplish given the challenges that kids with autism and other DD's can present.  They're tough kids sometimes.  Some are tough most all of the time with challenging behaviors, oppositionality, impulsivity, etc etc etc.  Yet even with these challenges, the task of the parent is to remain an adult.  As has often been said, there is no scene more silly than that of a parent arguing with a child at the child's level.  That's just two kids arguing - and who wins that one? The child of course.

I learned a lot from this dad.  There are lots of moms and dads (not to mention grandparents who are stepping in for moms and dads) who really do well at maintaining their "adult" sensibilities in the midst of what can be chaos.  

For the rest of us....find these folks.  Study them.  Learn from them.  That's what I do.     

Friday, January 3, 2014

Blended Families

The frequency of "blending" new families is high given our divorce rate.  Divorced people understandably want companionship and seek to re-partner with another.  After all, we are made to be companions with others - otherwise we'd all be living in caves and reproducing with spores.

When adults remarry they bring their children with them, obviously.  What's less obvious is the challenge of blending children and adults of different families together - particularly when one of the kids has a developmental difference or challenge.

The standard element in blending is the ability to form a bond.  I recall a friend of mine who worked in a cosmetic factory sharing his amazement at how they were able to mix oil and water to form a cream that didn't separate.  This is only done through chemical bonding.  Is bonding between people so much different?  We create deep, physiological bonds with one another when we marry.  Couples become "one flesh" to quote the Bible.  Infants are known to literally smell their mothers.  This is bonding.  So how do we bond with a child who is not of our making?  How does the child bond with us?

The process of "bonding" in blended families is a noble goal which is often attainable with a lot of work by all the parties involved.  And yet.....some of our kids are hard. They're hard behaviorally, emotionally, and sometimes even physically (I'll leave that to your imagination.)  So I've come to believe that some of our families can be mixed, or joined, or combined, but I'm not as sure as I once was that "blending" is going to happen.  And I think that's OK.  Accepting the reality of what is allows us to live in the present, with all the love and hopes in our heart that any other family member has. But falling short of the holy grail of "blending" is acceptable.  It is not a failure of effort or love or commitment.  It need not  be a sign of marital discord.  It might just be a sign that the needs of one of the members of the family present an unusual challenge which are not well designed for "blending."
I've come to believe that mixing, combining or joining can be just as beautiful.

So, for blended families, keep the goal of "blending" in your sights, just remember that the challenges to blending don't make what you have a failure.