DSM 5: My view from the trenches

A New York Times article on January 19, 2012 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 The firestorm we are witnessing is based upon an unpublished study founded upon questionable data that has not been reviewed by other scientists.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.

Boys are taught that you are a sissy if you cry

Times are changing but most men have still been raised to hold in their emotions or risk ridicule. On Thursday, July 7, 2011, I had the privilege of moderating a panel on fatherhood at the 42nd annual Autism Society Conference.  The panel was made up of fathers with the courage to open up along with autistic self-advocates, and service providers.

As the fathers opened up, men and women listened intently.  I shared how hard I had tried to change my son, Tariq, now 31.  In the end, it was he who changed me, made me a father and the man I needed to be.

Charles Jones shared his sadness and confusion about the diagnosis, his love for his son, Malik, and his joy in Malik’s progress.  Charles is determined to make a difference in raising awareness about the needs of fathers.  His voice came through with passion in the teaser for his documentary in production—“Autistic Like Me.”

Ven Squenzia is the father of a young woman with autism and the president of the Florida Chapter of the Autism Society (http://www.autismsocietyofflorida.com/).  Ven cannot imagine who he would be today if his daughter, Amy, did not have autism.  He is a tireless advocate for families with countless friends and acquaintances in the autism community.  He read a poem by his daughter expressing her love.

Dr. Stephen Shore, non-verbal until 4, has fond remembrances of his father.  Today he is professor of special education at Adelphi University and travels the world building autism awareness.  He credits both parents for believing in him.  His father’s beard felt like needles and created what Stephen refers to as a sensory violation.  Stephen did wish that his father had gotten more involved with his special interests in his youth.  His web home is http://www.autismasperger.net/

Alex Plank was diagnosed with Asperger’s at 9.  He is the creator of www.wrongplanet.net, a social networking site for people with Asperger’s with over 52,000 members.  Alex shared some of his social struggles growing up with funny stories and good humor.  Like many young men on the spectrum I know, he wished his father had been more helpful to him in terms of how to begin dating.

Craig Gibson spoke as a triple agent.  He himself grew up with a learning disability and openly shared how he was mercilessly bullied and how he relates to fathers’ worries about their children.  He also has a son with a speech delay, and he has served as the lead evaluator for a preschool program for children with special needs.  Craig blogs regularly at www.autismspot.com and www.sensoryspot.com.

Dr. Diane Adreon has an adult son with autism and over 30 years experience working with children and adults with autism at CARD, the Center for Autism and Related Disabilities in Miami (http://www.umcard.org/).  She talked about the important leadership roles played by fathers in the autism community of South Florida.  These men were open and comfortable speaking to her.

Speaking on behalf of the panel, I expressed gratitude for the opportunity for our voices to be heard.  When fathers open up, everyone benefits.  We will continue to express the vulnerable feelings, as we encourage others to do the same to further the needs of children and families.

A Mothers Day Plan for Dads

Why is it so hard for moms to take a break? Renowned child psychiatrist, Donald Winnicott (1896-1971)said that struggling with taking a break from maternal responsibilities is normal. “Primary maternal preoccupation is a consuming attachment to one’s baby, a normal sickness from which most mothers recover.” He was talking about the mothers of typical children—who presumably have a little less to be preoccupied with on the average than mothers of children who have autism and other special needs. So it’s normal, but when it goes on indefinitely, it’s not healthy.

Winnicott appeared regularly on public radio in the United Kingdom. When asked how he knew so much about mothers, he responded that most of what he learned came from listening to mothers. He also wrote, “I think mothers are helped by being able to voice their agonies at the time they are experiencing them. Bottled up resentment spoils the loving which is at the back of it all.”

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 our practice at Alternative Choices, we hear that this can sound like just one more thing to do. And another thing they just aren’t getting right– even more guilt!

In contrast, the average overwhelmed father seems to have less difficulty taking a break. He may also have trouble talking about what he cannot fix or take action about, which offers no outlet for his partner’s feelings. 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 and ignored.

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. 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. Most likely you will be helping her feel better—it may even lead to her taking a break.

Anger and Other Feelings

“I am just so angry.” With his voice shaking, he said what other men in the circle were thinking and feeling. “When I get home and approach my son, he pushes me away. I can’t stand it anymore. He just wants his mother, and he pushes me away from her too. The other day I told my wife I am ready to sign my parental rights away.”

Alex loves his son, but it’s the autism this man hates and the way it makes connecting seem impossible. The occasion for this fathers (and male therapists) group meeting on April 15 was the opening of the Autism Resource Center by the Ontario Arc in Canandaigua, New York where I was their guest speaker.

Once the anger was outed, the whole group of men seemed to open up. Inside the shell of anger, the men found fear, sadness, guilt, and shame. Their honesty with each other opened the door to possibilities for connecting with their children. The man who started the discussion didn’t come to disown his son– he came to find out what he could do.

Another man talked about how getting on the floor with his son and just tickling opened the door to the possibilities of playing together. Others shared what they could do with their children and how to follow their child’s lead, and those still at a loss got ideas and inspiration. They planned to meet again.

After my presentation the next day, Jen approached me to say that her husband, Alex, came home determined to find ways of connecting with their son. Maybe now she could get some breaks. She was so grateful there was now a fathers group in their town.

International Autism Awareness

On April 2, 2011, the Autism Society of El Paso sponsored its “12th Annual International Autism Conference.” Over 150 people attended from 2 countries and 3 states: Texas, New Mexico, and Chihuahua (Mexico). On Friday evening, over 40 men gathered to talk about fatherhood when a child has autism. As one father put it, “The conference wasn’t about you, it was about us. You helped us to talk about ourselves and connect with each other.” As the father of a nonverbal adult son on the spectrum, that meant the world to me.Then on Saturday, over 100 men and women, parents, and professionals, Spanish and English speaking, spent the day talking about families and taking care of everyone’s needs. I was their guest speaker and facilitator. Having let down their “armor” the night before, men were able to speak openly of their struggles, their dreams, and their love for their families. The women were deeply moved by hearing how much they are appreciated and then spoke from their hearts.

How is this international? When people come together across borders in different languages to speak of common experiences and shared thoughts and feelings, there is an incredible wave of fellowship and compassion. Men and women showed appreciation for each other and their struggles to be present for each other under trying circumstances. Although connecting for children with autism is different and difficult, being aware makes contact possible. As one parent shared, “If there’s anything our children with autism teach us, it is to be present in the moment.”