Why is it so hard to love somebody with Asperger's Syndrome?

Check out this video made by summer intern and rising Cheltenham High School junior, Dylan Welch, after reading Dr. Ariel's book, "Loving Someone with Asperger's Syndrome."  Any feedback for Dylan?

Revisiting Masculinity:  The father’s journey with autism
by Robert Naseef, Ph.D.

When my son was born in November 1979, I jumped for joy.  When he was diagnosed with autism 4 years later, I thought my head was going to explode.  I couldn’t get the word autism out of my mouth for months.

In general, it is harder for men to talk about problems than women. Women seem able to talk about problems and find comfort without needing to fix them. Of course, women do want to fix problems. As for men, when we can't fix something, we don't want to talk about it—and this is a factor in male depression and a problem in relationships. 

As Nelson Mandela wrote, “A boy may cry; a man conceals his pain.”   Boys are still taught at a young age to feel ashamed of their tender feelings, especially their gentleness, caring, vulnerability, and fear.  What is acceptable is showing their tough, action-oriented side along with physical strength.  All emotions save anger are to be hidden even from themselves. So what’s a man to do when his child is diagnosed?   How do you handle that choked up feeling?  Men tend to withdraw and cry on the inside.  On the outside we may be grumpy and irritable, but on the inside we are hurting. This is part of the secret life of men raising a child with autism.

I wanted to be a better version of my father when I held my son Tariq for the first time.  I looked at my son and saw myself, only better.  His diagnosis of classic autism shattered that reflected vision, like a broken mirror.  There were no words. 

  Asking a male how he feels usually evokes an automatic “I don’t know.” What helps men express themselves when experiencing a broken mirror with an autistic child, 80% of whom are boys?  Try “Guy talk” such as:

•           What’s it like for you? (Curiosity works better than empathy)

•           Tell me more.

•           I need to know to be closer to you as your / wife/ friend/ brother, etc. 

•           Your child needs you.

•           Let’s figure out a plan.

Men respond to making an action plan.  This is a positive part of the male code and not outmoded.  Our families need us to be present, and as fathers we are yearning for connection but lost about where to start with a child who is so different.

To find clues, I ask men about their warmest memories of their fathers.  Almost without exception they recount doing things with their dads such as taking a ride or a walk, building or fixing stuff, going on errands, cleaning up the yard, watching TV, or throwing a ball around. 

The essence of every good memory tends to be doing things together.  This fits the male mode of being.  It’s not everything.  But it’s a good start and it works every day.  We still need to get up to speed listening better and expressing ourselves.  We’re a work in progress.

I yelled!  Am I a bad parent?  
by Robert Naseef, Ph.D.

Parents frequently confide to me when they have lost their patience. Fathers as well as mothers share their guilt and their heartbreak when this occurs. As one mother said to me recently, "My mother yelled at us, and I vowed to never yell at my children. Now I'm becoming a yeller. What's wrong?"

Just last week a father told me about how he lost it with his four-year-old son with Asperger's. After picking up his son from school, he stopped at the convenience store for his wife to pick up milk for the next day's breakfast.  His son did not want to stop and had a full-scale meltdown. When he didn’t calm down, his father started yelling at him. Now just a few days later, his father was wracked with guilt.

This father like other parents felt guilty. I assured him that his reaction was not unusual and did not indicate that he was a bad parent just because he lost his patience. He told me that his son had made tremendous progress since being diagnosed over a year ago, and he just couldn't understand this.

I briefly discussed with him that difficulty regulating emotions was more often than not one of the challenges that goes along with being diagnosed on the autism spectrum. Changes in routine, such as stopping at the store, can often be a trigger. This occurs all along the spectrum from mild to moderate to severe.

By the end of our counseling session together, this father looked at me and came to his own conclusion. "I have been expecting too much. That's the lesson I'm learning. I have to do better at managing my expectations; that's the only way I can remain patient during situations like this."

Of course this sounds simple, but in the moment it is easier said than done. In order to manage expectations, it is important to understand the individual developmental profile of your child. The best way to understand this is to learn everything possible about your child's diagnosis and communicate regularly with your child's teachers and therapists.

In terms of your expectations about yourself, let's be clear: it is normal to struggle with your patience in challenging situations.  So the next time your child has a meltdown, take a breath—or two or three. Then ask yourself what you're expecting and how reasonable that is in the moment you are presently in with your child.

Moment by moment, day by day, being mindful of these issues, you and your child will both grow.

Mothers Day Hints for Men 

by Robert Naseef, Ph.D.

Why is it so hard for moms to take a break? What can fathers do to help?

First of all, struggling with taking a break from maternal responsibilities is normal. This is hard for the mothers of typical children—who presumably have a little less to be preoccupied about than mothers of children who have autism and other special needs.

So feeling overwhelmed by the enormous responsibilities of motherhood is normal, but when it goes on indefinitely, it’s not healthy for a mother or her family. And fathers tend to begin feeling left out and neglected. While I frequently write about fathers, I spend a good deal of my time as a psychologist listening to mothers. Almost invariably mothers seem to be relieved when they give voice to their struggles—particularly the guilt about not doing enough or missing something they should have done or thought about.

Opening up and connecting about upsetting situations can help. On the other hand, suggesting that a mother do more to take care of herself often makes her feel worse. Listening to mothers in at Alternative Choices, we hear that this can sound like just one more thing to do. Their lists are already too long. And another thing they just aren’t getting right—even more guilt!

One mom even told me, “My life seems like one long day!”
In contrast, the average overwhelmed father seems to have less difficulty taking a break. On the other hand, he may also have trouble talking about what he cannot fix or take action about. He may shut down out of helplessness and emotional overload that he has no words for. The very same man may love his partner and children passionately; yet he may feel left out, ignored, and powerless.

This reaction offers no outlet for his partner’s feelings.
Still, most fathers admire when the mother of their children reacts like a mother lion with her cub, doing everything possible to raise their child.

So for this Mothers and Day and every day really, here’s a plan for men:
• Tell your partner how much you appreciate her and everything she does for your children. Be specific about all the wonderful things she does and how hard she tries.
• Don’t do something. Don’t make suggestions. Volunteer to just listen to how she feels.
• Ask what you can do to make her job easier.
• Gently and persistently keep asking and showing up to do stuff.

This is how to be a good man in your situation. Help her to take a breath, literally and figuratively. Let her know that she is indispensable. No one can do a better job. In the words of Oliver Wendell Holmes, “The real religion of the world comes from women much more than from men—from mothers most of all, who carry the key of our souls in their bosoms.”

Finally, remember the most important thing a father can do for his children is to love their mother.

Helping Fathers Bond with Children with Autism
by Robert Naseef, Ph.D.

With men, there is often an awkward pause before they can find the words to speak.  Not about sports—that’s usually easy—but about what it is like to be doing their best to face autism with no “fix,” no exit, just life-altering challenges.  Then they share their struggles and what they are learning about how to relate to their children and families. This is some of the work I do as a psychologist who happens to also be the father of an adult child with autism.

As Nelson Mandela observed, “A boy may cry; a man conceals his pain.”  There is a traditional male imperative to “suck it up,” so men tend to cry on the inside.  On the outside we may be grumpy and irritable, but on the inside we are hurting.  Life doesn’t stand still and wait for us.  Families need fathers to express themselves, and to spend time teaching, playing, and otherwise engaged. Children with autism hunger for their fathers’ involvement and approval just like every other child.

In opening up, possibilities emerge for fathers about ways to connect with their children who relate and experience the world differently because of autism.  For example:  
• Their children may be drawn to Lego’s or video games as opposed to sports, and they want us to be there with them.
• They may struggle with language to express themselves, so we have to learn to read their nonverbal clues.
• Sensory differences and difficulty regulating emotion may trigger shutdowns and meltdowns so we have to learn to be sensitive to these issues.

Children with autism are also just children; growing up is about more than just the necessary therapies.  So find something parent and child can do together and enjoy.  It could be as simple as taking a walk or a ride in the car.  Or get on the floor and play with cars or blocks in whatever way your child likes for starters.

By entering the autistic world of our children and understanding how their minds work, as opposed to trying to make them who we want them to be, we learn how to be with them.  Only then can we grow together.  Fathers involved in the daily lives of children inspire with their love and devotion.   

Life with Aspergers: Book Review: “Loving Someone with Asperger’s Syndr...

Life with Aspergers: Book Review: “Loving Someone with Asperger’s Syndr...: Over the years, I’ve read quite a few relationship books, some have been good, some were bad and some were truly great. Most of these book...

Learning to listen to "I Don't Need Help!" by Kelly Peters, MA

It can be hard, if not impossible for some people to see something that (they think) needs to be fixed and do nothing.  It's maddening.  Twice last week, when working with adolescents I saw the need to help, to fix what I saw to be a problem, and twice last week I was shut down.  I've thought about it and realized that as a caregiver it can be difficult to refrain from rushing in to help.  Whether it is a person with an addiction, an aging parent, or a young person dealing with the frustrations of a world that doesn't always understand them, the impulse to fix, to help, is overwhelming.  What we miss in our rush to fix, however, is the opportunity to listen. The chance to simply be present and aware for someone.  To allow them to talk, as much or as little as they are ready to about what is going on.  To simply BE for someone without extensive probing, without questioning them, without solving things. Sometimes it is the process of the problem; sitting with the issue, allowing it to develop on its own that is the learning, that is, truly, the fixing.  So I will be working on my new mantra this week "shut up and listen". Wish me luck. Kelly Peters, MA

Coming In March

DSM  5: A view from the trenches   by  Robert Naseef, Ph.D.  

A New York Times article on January 19 entitled “New Definition of Autism May Exclude Many” has started a panic in the autism community about the changes in the definition of autism scheduled for release in the DSM 5.  Are our children in danger of losing services?   Can we hurry science? Is anything really changing? These questions and more are perplexing the autism community and professionals as well.  I write from the perspective of a practicing psychologist and as the parent of an adult child with autism.

            Let's not lose sight of the bigger picture. The struggle to get and keep good services for a child diagnosed with autism has been the story of my life with my son for over 30 years. Anyone who cannot afford to pay for the services themselves has faced and continues to face the same uphill battle. I doubt that this will change in either direction with the new criteria.

Debates between experts are not new in autism but can be disturbing to families who are caught in the middle and don’t know what to believe. The firestorm we are witnessing is based upon an unpublished study founded upon questionable data that has not been reviewed by other scientists.  Psychiatrist Fred Volkmar from the Child Study Center at the Yale School of Medicine stepped down from the DSM committee, presented this data to the Icelandic Medical Association and then participated in the NY Times article.  It looks like Dr. Volkmar decided to take his issues with the DSM 5 autism criteria to the court of public opinion.

Based on this study, the New York Times reported that “about a quarter of those identified with classic autism in 1993 would not be so identified under the proposed criteria; about three-quarters of those with Asperger syndrome would not qualify; and 85 percent of those with P.D.D.-N.O.S. would not.”  No wonder that people are scared.  Access to services for all affected by the symptoms of autism is vital and any threat to this is terrifying. But we don’t really have evidence that this is what will happen with the DSM changes.   DSM 5 field trials are underway, and Autism Speaks and the Autism Society advocate for an in-depth assessment of the impact of the DSM 5 changes upon those currently receiving services.  

Every time I think I have my mind wrapped around the controversy, I read something else and become re-confused—at least temporarily.  Many colleagues who are mental health professionals are having the same reaction to DSM 5 changes in general, not just the autism criteria.  Change that can impact your family can be difficult, let alone when researchers and well known doctors are arguing on public forums.  If well-read professionals feel confused and concerned how are parents and others supposed to feel?  

In reviewing the children and adults diagnosed with autism in our psychology practice over the past 20 years, I have not come across anyone who would lose the autism diagnosis.  On the contrary, we have served many families whose children were misdiagnosed and undiagnosed several times before finally being correctly diagnosed with autism.  In recent years, because of the increased awareness of the symptoms of autism, we have also ruled out autism when it was suspected and not confirmed upon careful evaluation.

We have also observed for several years, that the autism diagnosis by itself does not lead to the level of services experts recommend. A two year old child just diagnosed with autism, for example, in most parts of the United States gets only a few hours of home based services per week, while experts recommend 25 hours of programming per week. Despite the increasing ability to diagnose autism spectrum disorders accurately in very young children, the actual practice lags behind.  Parents and professionals know all too well that the lack of or removal of services has been an ongoing threat.  Parents have had to argue the challenges faced by their child and their symptoms in order to get what their child needs regardless of the autism label. Many schools are poorly funded, especially in the inner cities and rural areas.  Staff is often inadequately trained, and there are too few opportunities for developing social skills by including children with autism with their same aged peers.  Even in relatively better funded school districts, services are often cut back especially when children make progress.

From my perspective, it is preposterous to say that over-diagnosis of autism is a major problem.  That position is in denial of the everyday life of families who love and care for children with the symptoms of autism.  Scientifically, we do not know how many currently diagnosed children and adults will no longer meet the new criteria.  The issue hinges upon how professionals will interpret the new definition.  That problem is nothing new.  DSM 4 and DSM 3 had the same problem. 

There is no doubt that there will be change.  In closely reviewing the new criteria, I think that DSM 5 brings clarity in describing what we have been calling the autism spectrum by officially recognizing the wide range or continuum of how autism impacts an individual.  There are other related issues which I am not addressing in this commentary.  For example, eliminating Asperger’s syndrome as a category is a serious problem for those who have lived and created a sense of community and identity with this label.  Whether the DSM 5 changes related to autism will be for the better or for the worse depends upon how families, people with autism, and professionals handle them.

Loving Someone with Asperger's Syndrome

My self-help book for partners of people with Asperger's syndrome has just been printed and is being sent to me as I write this.  It will be available in bookstores soon!  Alternatively, you can come to the book launch event that we are holding at our Alternative Choices office at 319 Vine Street, # 110 in Olde City Philadelphia, PA (19106) on Friday March 16 from 5:30-8pm.  It is a book that hopefully will help those of you in intimate relationships with someone who has AS to navigate a loving relationship with your partner.  I just found out today (not sure why it was a secret) that the publisher received at least 5 very favorable reviews from people who read the initial manuscript including Dan Gottlieb and Tony Attwood.  I am very much looking forward to your feedback about the book and about your experiences loving someone with Asperger's syndrome.  Cindy Ariel