Wednesday, September 25, 2019

How We're Minted: Growing Up With A Sibling With Autism

As in all posts, materiel changes are made in the descriptions to protect identity.

I was taught many years ago that often, people in the helping professions come from dysfunctional homes.  And I have found in my career that indeed, many nurses, doctors, mental health professionals have family histories that include challenges such as addiction, chronic illness, trauma of many kinds and the like.  Many, but certainly not all.

Later in my career I was taught that the siblings of children with severe medical, developmental or mental health problems often become caring and emotionally rich adults.  And I found in my career that this has often been the case.  I've met many siblings of kids I work with and other adults who have sibs with disabilities who are indeed, kind, sincere, hard working, earnest and the like.  Those traits, that experience can lead to great inner strength and self confidence. 

This is true for many, but not all.  Susan's a college student who has a younger brother with moderate autism.  Her brother (and her family) struggles with his rigidity, his narrow emotional capacity, his frustration with his understanding that he has autism and his depression that he's not "normal."  They have dealt with her brother's behavioral challenges and Susan was always expected to help out, to accommodate, to help when asked.  And she did, faithfully.  She understood that her brother couldn't help having autism.  She saw her parents' struggles with him and tried whenever she could to pitch in to help.  Her parents appreciated her efforts on their and her brother's behalf. 

Now in college, Susan has been struggling with significant that anxiety that can be almost paralyzing.  It started as small worries when she was helping out with her brother, the tension in the home such that if things went wrong, someone was likely to yell.  Likely her brother, not infrequently her mother, less frequently, but sometime, her father.  And with the yelling came the sharp sense of responsibility that has grown, now all but out of control. 

She can't decide what to do or concentrate on her academics for fear of getting them wrong (despite that fact that by doing so her grades have indeed suffered, adding to the spiral of anxiety.)  Her social life is flat.  She won't go out when asked, fearing that anything and everything might go wrong.  She might say something wrong or do something wrong.  He probably won't like her anyway.  She's not pretty enough.  All the classic low self esteem stuff that is not at all consistent with what I learned about siblings who have significant disabilities and, as adults, flourish.  Susan's not flourishing.  She's deeply stuck.  She's fears doing all of the normal things that folks with anxiety benefit from, whether it's exercising regularly, learning simple meditation, reading materiel that can help, calling a doctor for medications. She's ambivalent about therapy as well. 

So when speaking with her recently about a problem she was having with a friend, where she was besides herself fearing she would hurt her friend's feeling with a very reasonable request, I asked her where she learned that her needs always came second to those of others.  She shrugged.  I asked her what it was like for her when she was a kid dealing with her brother and whether his needs came first.  She stopped.  She teared up, the pain of bearing more responsibility then she could bear for so many years, of worrying about whomever might yell next. 

And I showed her an ancient coin that happened to be on my desk.  The coin is a couple of thousand years old and has the look that when struck, the stamp that was used was just off center, as is common with such antiquities.  It has quite the imperfect look.  And yet, from the moment it was struck it was legal tender, as valuable as any. And I showed it to her, noting the imperfections of the coin.  Imperfections that reflect those that each of us may have, whether it's struggling with anxiety or depression or abrasive personality traits or whatever other imperfection we may have.  We've all been "struck," like the coin, by the cumulative events of our history.  Nobody really comes through the crucible of childhood unscathed.  Some of us may wear better than others, but we all carry scars of one sort or another.  It's OK to be who you are, whether the scars are large or small, whether you cope well or struggle with coping.  The key factor is to understand that, as the ancient, poorly struck coin, your value is exactly equal to whomever might be standing next to you.  I hope Susan hears that. 

Friday, July 12, 2019

Special Needs Kids, Special Parents and Marital Stress

I've recently been made aware (again) of the challenges marriage.  It has been shown to be a myth that 80% of couples with special needs kids divorce.  Studies are mixed, some showing a slight increase, some showing no increase at all, but these numbers sidestep the issue of stress upon marriage with kids with autism and other special needs.

The fact is that kids with special needs need special parents.  I've seen many parents who have gone to acrobatic lengths to meet their child's needs, often with wonderful results.  But such efforts cannot be compared to the NT (neuro-typical) parent's driving around the region for their child's extra sports activities.  Such efforts are commendable, and stressful, but of an entirely different quality and nature than coping with the challenges special needs kids can bring. 

There's likely no need to list here what those challenges are, but on the odd chance that the reader does not have a child with special needs, or has just received a new diagnosis and is preparing, the challenges can be severe.  Children with special needs may have erratic sleep schedules impacting parents' sleep schedules; challenging behaviors such as repetitive tantrums and severe oppositionality; self injurious behavior; aggressive behaviors; high levels of hyperactivity and impulsivity; frequent destruction of property, the list is too long to complete but the cost to a marriage and household are clear. 

How does a marriage survive this?  One of the mistakes I've frequently seen is a dynamic described in the Family Systems Literature of "triangulation."  Triangulation is when a parent has an overly close relationship with a child to the exclusion of their partner.  The implications are clear.  The triangulated partner is left "out" of the decision making process.  The child's role in the family may be elevated.  All sorts of problems can result. 

In the case of a child with special needs, however, the "boundary blurring" may be about the demands the child brings the family as opposed (or in addition) to other factors for NT families.  The results to the marriage, however, can be similar.  Estrangement, emotional and the resultant physical distance from one another that, over time may or may not lead to divorce.  But it certainly leads to a lonely life for each member of the couple. 

It's a frequent yet dangerous path that can be taken.  The tougher the kid, the easier it is for the parents' to drift from one another as one (classically the mom) may be forced to spend more time with the child.  Yes, forced.  The pressures on these families is not something easily understood if one has not experience them. 

What's a couple to do?  My basic suggestions, even in the face of severe behavioral challenges are:

  1. Build time in for each parent to have some alone time to regenerate.
  2. Find and build supports from family, community and friends to provide some (even small) amount of time for parents to go out as a couple, even if it's for an ice cream cone after bedtime.  Small amounts of time can be jam packed with quality.
  3. Be realistic about what can be accomplished for your child.  Ask the professionals involved for their views on your child's prognosis.  Such views are opinions, not predictions and not perfect, and it's proper to keep your goals set high.  But be realistic.  
  4. Remember the importance of forgiveness.  Giving your spouse the benefit of the doubt can be the kindest gift of all, and the best thing for your relationship.
  5. The most important in my book: communicate.  There's nothing better in a relationship than the ability to communicate honestly, particularly about the hard stuff.  

Tuesday, June 18, 2019

What Do We Expect

Jung discussed the collective unconscious.  I've never been a big Jung groupie, but time and again I see evidence of this.  Recently it had to do with what our expectations of the high functioning autism (HFA - used to be called "Aspergers") population could/should be.  

(Note that any identifying information has been disguised to protect confidentiality)

I see a young woman with HFA who is quite happy when she discusses her preferred, restricted menu of topics.  The specifics of what she prefers to discuss are besides the point, but she becomes pretty uncomfortable when discussing things like some of her own challenges in the workplace or within the family.  Her tolerance for such discussions are quite finite.  What is seemingly infinite is her willingness to discuss her preferred, restricted menu of topics.  

Another high school young man that I see also has (to some) quirky limited topics he likes to discuss.  His parents structure him about this with some frequency.  He asked "Why do people always tell me what to do?"  I thought it a good question and we discussed how, given the fact that he has autism, a lot of adults want to help him do as well as possible so that, as an adult he'll have the best shot at success.  He understands that most adults don't spend the amount of time discussing his preferred topics the way he does, but he likes what he likes.  He responded "It's not like what I talk about is against the law."  And I had to agree.  

Restricted interests are quite common among the HFA population.  To a greater or lesser extent, it's what certain people do, how they're wired.  These two people with HFA have their respective idiosyncrasies, but their families struggle.  These two discussions brought up a couple of interesting questions that I share:

  • When should parents accept their HFA child's atypical behavior as a natural manifestation of autism and when should parents (and professionals) intervene?  Certainly we want to encourage as much independence as is attainable for the individual, and yet, not every person (with autism or not) is a good candidate for college, maybe not even for many work settings, maybe or maybe not for independent living.  What I would propose is that parents might need to sit back and reflect how reasonable it is for their children to continue to grow?  It's not a simple question, and I'm not suggesting that parents quickly give up on their kids.  I'm also not suggesting that they pester their kids either.  I'm not sure what the best medium path is, but at least for these two families, I'm thinking they will benefit from considering the question of what is "reasonable".
  • We train children for lots of things like speech, manners, toileting, reading and other academic skills.  But how do we know when our HFA kids have hit their own personal wall of accomplishment?  That's quite a tough one and, of course, is dependent on the strengths and weaknesses of each individual.  Plenty of folks with HFA can grow throughout the course of their life, learning new skills, flourishing in education and career and love and family.  I would also hold that there are plenty of folks with HFA who, at some point in their development, reach some level of a maximum of their strengths that might challenge their success in these same areas.  They can work, be productive and live a whole life, but it may be a life that's less whole than their parents desire for them.  Parents' expectations for their children, those with HFA and those who are neuro-typical (NT) often have to accept the reality of their children's abilities.  Sometimes, as can be common with chronic conditions, they need to accept the reality repeatedly.  
There's lots more to discuss, but I offer this as a beginning to what I think is a worthwhile conversation, if a challenging one.  

Monday, April 8, 2019

The Devil Is In The Details

I recently had cause to remember a detail (one of the many below) that, for a client I recently saw that might be very important.  So here's some reminders for families of children with autism and other developmental disabilities.  Many of these things are applicable to "neurotypical" (NT) children and adolescents as well.
  • Regarding school issues: is there an IEP?  Is the IEP up to date?  Is the IEP descriptive and realistic about how the child's issues should be addressed?  Are the goals measurable (and not subjective)?  Was an autism specialist involved in developing the IEP?  Is there a behavioral plan, and if so, is it measurable and realistic?  Was there a Functional Behavioral Analysis (FBA) and if so, was it performed by a board certified behavior analyst (BCBA?)  (Many schools have employees who have taken an in-service do FBA's, which I don't recommend.  FBA's can be complex.)  Does the teacher receive the proper in class support to implement the IEP?  Might a change in classroom placement help your child succeed - whether to a more restrictive or less restrictive environment?  If the school has already suggested it, consider re-evaluating the options.  Has the child's diagnosis been re-assessed recently?  Remember, according to practice standards, psychological testing should be repeated every 3 years for children who have disabilities.  Was the testing done by the school or by an independent psychologist?  Some school psychologists do a great job, but you can always request a second opinion (and often the school has to pay for it.)
  • If your child is having behavioral challenges, might they be modulated with the use of medication?  Remember, trying a medication is not marriage, a short trial of medications is overwhelmingly safe (no I'm not an MD, but your MD will say the same thing re: most of the first line medications used for behavioral or emotional issues) - and there's decades of data on most of the medications used that have not indicated serious side effects.  If medication is currently being used, are you sure your child is taking it?  Has the dose been adjusted?  Remember, many of these meds are weight based, and as your child grows the dosage may need to be re-assessed.  Have you followed up with the prescribing physician per recommendations?  If your PCP (primary care physician) is prescribing the meds, and you don't think it's working well, consider consulting with a board certified child psychiatrist.  If you are already seeing a psychiatrist and feel that the meds have not been working, or that the psychiatrist is not paying proper attention, have you considered a second opinion?  (Best practice supports second opinions, don't be intimidated that the doc will not like you, he or she knows it's part of the business.)  If you're using herbal supplements to help with behavior, do your research.  As the FDA does not monitor them, supplements may or may not have the ingredients you think you are buying.  Have you researched the academic literature on the effectiveness of those supplements?
  • At home: is there other stress in the home that could be negatively impacting your child (think behavior or mood changes) such as marital issues?  Drug or alcohol use?  Medical issues affecting a parent or sibling?  Other mental health issues affecting a parent, sibling or other close family member?  (Parents of kids with special needs are at very high risk for depression due to the great stress that can exist.  Be honest with yourself and with your spouse/partner.)  Other significant stress on the family such as legal issues, frequent job changes or moves (even if for good reasons these may be hard for your child to cope with.)  Don't think that a child with more severe impairments doesn't "get it."  They can and do.  Has there been a divorce?  Remember, no matter how "amicable" the divorce, kids always lose.  Even when the divorce is needed, kids tend to want a reconciliation and tend to take responsibility, no matter what you tell them.  They need time, space and often therapy to absorb the reality that they really had nothing to do with it.  If/as the marriage is struggling, seek help now!  It's a whole ton cheaper in time and money to do so compared to the time and money involved in divorce.  (Therapists are cheaper than attorneys!)  Parents, don't forget the value of support groups.  There's nothing like speaking to someone who's been there, and you don't know that until you go, even if you're "not a group person."  (In the metro Atlanta area, the Spectrum support group based in Gwinnett County is easily the best in the state and I'd not be surprised if it's the best in the nation.  Certainly it's among the best in the nation and worth checking out.)  
  • Socially: Is your child being bullied by others (including siblings) in the neighborhood, the extended family or at school?  Has your child's mood or behavior seen a significant change?    Children with autism, whether high or low functioning, can exhibit signs of depression.  Look for a change in their normal mood, onset of irritability or of crying or a sad affect.  Have you considered the effects of puberty?  Have you explained these changes in a way they can understand?  Are they struggling with how to cope with their romantic feelings?  
This is a bit of a thought "dump" but all of these "details" are important and need attention.  The devil may be in the details, but ignoring the details can make life for you, your child and family a living hell.  

Friday, March 15, 2019

A Millenial Dilemma?

As in all posts, descriptions of individuals are materially changed to assure confidentiality.

She's in her mid 20's and dissatisfied in her 3rd job since barely completing 2 years of college.  She still lives at home, despite her ability to afford housing.  Her parents hope she'll "find herself" and launch to independence.  She's never been able to maintain a romantic relationship for any length of time, finding those she dates as "not compelling."  She states she's anxious, sweating each and every detail that comes her way, yet (despite the Zoloft her doctor prescribed) seems to repeatedly make poor decisions, such as at work where she tries, repeatedly, to assign her own responsibilities to those who are not her subordinates. 

So I asked her recently, innocently, not realizing I was really on to something, "What are your expectations from life?"  She paused, thought for a minute and said earnestly, "I thought it'd be easier."  "You thought what would be easier?" I said, figuring out as I said it what she meant.  "Life" was all she said.  She thought life would be easier.

So there it is.  She's a bright woman, no learning problems or ADHD.  She did well in High School, never having to work to hard to get solid grades.  She's pleasant and has a good social group.  She gets asked out on dates from time to time.  But nothing seems to be engaging for her.

My concern for this person, and many (but certainly not all) with similar sentiments, is what they lose by underestimating and avoiding the critical life lessons of hard work.  They're bright, privileged, and struggle with how to get their life off the ground.  It's not just that folks like this hope to make the next best video game or app that takes off and sells for millions (or billions.)  It's that there seems to be no "plan B."  What happens when you don't become the next superstar?  This is, of course, not a new dilemma.  (I wanted to make it on Broadway after performing in a few HS musicals.)  But the lack of a realistic view of the world seems to be a common theme.

Alcoholics Anonymous is famous for the phrase "Accepting life on life's terms."  Acceptance, of course a primary theme of AA, is also a primary need in day to day life.  "It is what it is" is a cutesy current way of saying just that.  Reality.  Sometimes it stinks, but it is what it is, stinky or not. 

Viktor Frankl was a neurologist and psychiatrist and survived Hitler's death camps.  After the war he wrote a compelling book called Man's Search For Meaning, and while this forum is not close to being able to discuss such an important work, he encouraged people to consider more what life wants from them than what they want from life.  We are each charged with finding our own path to contribute - not sit back and wait for it to come to us. 

So I'm going to ask her (being a bit to dumbfounded at the moment it came up) to consider what Lord Rabbi Jonathan Sacks (former Chief Rabbi of The British Commonwealth) said of such issues in his book To Heal a Fractured World.  He suggests that in order to find meaning we find the place "Where what we want to do meets what needs to be done."  That seems to be as good a place to suggest to her to begin as any. 

Sunday, February 10, 2019

What Success Feels Like

As with all posts, no specific client is identifiable.  The topics being discussed are generic and combine those things that are common to many people. 

She struggled, mightily, in High School, being teased unmercifully and ultimately forced to transfer to a home schooling program in her junior year.  She passed the GED without much difficulty, but her lack of social skills being a young woman with High Functioning Autism made her an outcast, despite her academic strengths.  Middle school and high school were, she admits, pretty miserable for her. 

Not surprisingly she took in all of the social rejection given her and thought poorly of herself.  So poorly she ended up inadvertently sabotaging her first year in college.  Like many individuals with HFA, she (and, I suspect her family) were eager for her to start over in college, hoping the slate would be wiped clean and that she'd develop her own sense of herself and realize her own potential.  She traveled far enough to dorm but close enough to come home on weekends and holidays.  She sunk deeper into the depression and anxiety that had taken root in her middle school years, began skipping classes her first semester, but despite that passed all of her classes.  Which did nothing to ease the depression and anxiety, as she was no more socially accepted or comfortable in her own skin in college than she had been in HS.  By spring break she was home. 

I began seeing her about a year later after she had begun medications and was re-establishing herself academically at a local college.  Living at home with parents who struggled between how to best support her while struggling with their frustration at her failure to launch into adulthood.  As an only child, her parents were hoping so much that they'd be able, finally, to move on with their lives as she moved on with hers.  They'd worked hard, been on top of her needs as best as they could, but couldn't protect her from the unfortunate and predictable pain of adolescence as a person with HFA.  Nothing they did could help her cope with who she was in a way that helped her adapt to social life in HS and college.  They feared her return home might be permanent.

She struggled, as do many people with HFA, with the executive functioning challenges from her concurrent diagnosis of Attention Deficit Hyperactivity Disorder (ADHD).  parents and while in HS her teachers, via her IEP made sure she received the support she needed to get her assignments done, handed in and for her to prepare on time for tests and longer term projects, she was loathe to utilize the student support services at her first attempt at college.  Her lack of organization had already been reflected in some very low grades in this second attempt and I encouraged her to reconsider utilizing the school's student support services.  She reluctantly obtained the permission she needed for extended time for testing - the only significant accommodation called for, and utilized it when needed.  And between that and the support I and her parents gave her, she developed a pattern of success. 

We spent lots of time discussing the issues she struggles with, similar to those many young adults have; the nature of her diagnoses and their impacts upon her as well as how to identify and understand her emotions; religion and philosophy, as her beliefs in these areas were significantly different from her parents'; sexuality; ; self worth; how to contribute in her academics and professional career in a way that was consistent with her strengths and, more importantly, not inconsistent with her weaknesses and challenges.  I have found her a thoughtful young woman, willing to deeply consider alternative narratives to the many assumptions she'd developed over the years. 

And now, with her undergraduate degree within reach, she has a new struggle, a new challenge that she's not faced previously.  She now is learning how to cope with, to understand and internalize the emotions wrought by the feelings of success, how they conflict with the inner narrative she'd developed over the past number of years.  How it feels to have job prospects for which she's qualified and, as it turns out, is a good candidate.  She deserves lots of credit and I share with her parents in particular a great pride in her growth and development.  The struggle of success - it has a nice ring to it. 

Wednesday, November 21, 2018

Kids, Exercise, Screens, Stress and Choice.

In mid November of 2018 the CDC published its newest studies on the connection between physical exercise and health - both physical and mental.  As has been proven in study after study, and again in this report (, exercise is a critical factor in maintaining our physical and mental health.  And many of us take advantage of the easiest and most accessible of treatments for ourselves?  How many of us expect our kids to?

The study focused mostly on how much physical exercise helps medical issues, and mentions the mental health advantages almost as a secondary point.  Yet both are critical, to adults as well as children.  It states that "all cause mortality" is reduced with exercise.  Diabetes and insulin resistance.  Heart disease.  Hypertension.  Bone health.  Cognition.  All are helped.

Regarding mental health, the study confirms what has been studied, reported and replicated in the past regarding mental health.  Anxiety.  Depression.  Stress.  Tens of millions of us suffer from things that can be attenuated with exercise.  Sometimes significantly. 

We increasingly hear of the alienation that our children have from their peers.  Rates of suicidal thoughts and attempts have risen sharply, about 20% for 15-24 year olds since 2000, which roughly correlates to the explosion our use of devices.  People doubled their screen time in the 10 years from 2005-2015 and kids are a huge part of that.  The new report recommends that kids and adolescents from 6-17 get 1 hour of (mostly) aerobic activity daily.  (Meaning getting and keeping the heart rate elevated.)  The simplest way is by taking a brisk walk.  Yes, it's as simple as walking, for kids and adults.  (Can we even be so bold as to suggest that kids and parents walk together?) 

I've seen many parents act powerless in the face of their children's use of technology and I don't understand it, particularly in light of what we've been learning about how alienating excessive use of these technologies can be.  Parents: you are not victims of your child's devices.  You paid for them for heaven's sake.  It's OK to act like that.  Act surprised when your child objects to your exercising your rights of ownership, not defensive.

The evidence continues to mount.  Exercise helps both physically and mentally.  Screen time?  Well, it seems not so much.  But feel free to sit on your couch and surf the net (while your kid's in their room getting to the next level of the newest release of the must have video game of the month) and wait for a study that says increased screen time helps you and your kids both mentally and physically.  After all, it's your device.  Enjoy it.