Families of Adults Affected
by Asperger's Syndrome
“To Professionals Involved with Therapy for Couples and Families:
I am writing to introduce you to a new, long overdue support group, FAAAS, Inc., an information source and web site that has been established to help prevent the enormous psychological suffering that occurs among individuals who have a family member with Asperger’s Syndrome. When these family members come to professionals for help, they usually find the counselor is unaware of Asperger’s Syndrome and its impact on others.
This situation parallels the tragic story of families who had children with autism before the present decade. At that time, professionals were confident that autism was caused by the ‘cold’ parents, particularly mothers. Here were parents struggling to care for children whose behavior was often uncontrollable, destructive and unexplainable, who couldn’t communicate, and especially would not respond to the parents’ love, consolation, or tenderness. The parents were brokenhearted and devastated with insurmountable challenges but simultaneously given the extraordinary psychological burden of blame. The professionals “proved” parents were at fault by showing that the parents’ behavior was different from that of control parents. The possibility that the parents’ behavior was altered in response to the child was overlooked. Although it is now widely recognized that autism is an organic, neurologic, and probably, genetic disorder, enormous irreversible damage had been done.
This tragedy is being replayed in the context of Asperger’s Syndrome, a newly recognized form of autism in which the disability in interpersonal relations predominates but intellectual skills are high. Many cases are undiagnosed, and the spouses, who are also devastated and heartbroken by interpersonally unresponsive emotionally destructive mates, are simultaneously given the psychological burden of blame. The growing membership of this support group, FAAAS, Inc., independently tell of the same tragic experiences, including little or no understanding from professionals.
As a parent of a child with autism, I recognize that the experiences described in this packet are real. Please take the time to look through these reports and descriptions, and consider incorporating some of these concepts into your counseling sessions, practice, or your academic work. Your suggestions would be greatly appreciated. Please pass it on to other professionals.”
Linda L. Demer, MD, PhD
UCLA School of Medicine
“The FAAAS 1st International Conference: My Thoughts
In November 2000, I attended the first conference of FAAAS. Having some doubt about my acceptance there, I was overwhelmed by the caring, compassionate and loving nature of the FAAAS members. Having met the day before, we bonded right away in a great loving friendship. After getting our name tags and viewing the opening statements, etc., we all went outside to release our balloons for the world to see. The cooperation among all those strangers was great. Then it was on to Tony Attwood’s address about Asperger’s. As I had read, but could not believe, Tony is an awesome, very humorous and down to earth person. His understanding of Asperger’s, his respect for people afflicted with it, but also the understanding of what the families are going through, and his respect for them also, was amazing. It was very good to hear from a professional what has been discussed on the list. It did put the dot on the i. Tony understand Cassandra. It showed in many ways, but one thing stood out for me. He mentioned when he sees someone with the perfect answers and seemingly perfect attitude he suspects AS. That hit home so deeply. It totally described my mother who, in talking to, seems such a perfect loving mother. In talking to parents with adult AS children, but totally new to AS, I know the conference has made a huge difference. Many a heart has been lightened by the knowledge it was not their fault, and finally knowing what is really the matter with their child. For those in the know already, connecting with people in person was probably the best therapy of all. At least it was for me. If the first conference is anything to go by, don’t miss the next one. I know I will try to be there again.”
- Paula in Canada
“Attending the FAAAS, Inc. conference in November 2000 was such an emotionally fulfilling experience for me. Being able to talk (almost non-stop!) with other spouses/parents of AS adults in person was wonderful.
Here were people I could almost talk in short-hand with, and none of us seemed to tire of pouring out all that we’d been holding inside due to lack of understanding from family, friends, professionals. For me, this was the absolute highlight of the conference. Meeting in person Karen, Brenda, Jackie, and the wonderful listmates who were able to attend, was so gratifying. Having Dr. Tony Attwood lead the weekend was the icing on the cake. I was glad that he took us through, almost in outline, the topics we might want to consider talking about in more depth in smaller groups. As always (I’ve heard him speak several times), he provided so much information in a way that was humorous and approachable. He really “gets it” about Asperger’s, and knows how to convey all the nuances and subtleties of the disorder.
Once we broke into smaller groups about specific areas, I chose the partners group. This was the largest group and we began by going around the group and asking for questions/issues from each person. This was helpful for me as it validated so many of the things I’d experienced, and put them into the perspective of being married to a person with AS. I came away, though, with a strong sense of how enormous this issue is and how we only seemed to scratch the surface. The lack of awareness among professionals about issues faced by families with AS adults is staggering; just the scarcity of people skilled in evaluation and treatment is evidence of that lack. Dr. Attwood didn’t mince words about the difficulties of maintaining a marriage where one partner has AS; nor did he try to paint a rosy picture of raising children with a partner with AS. He spoke quite a bit about the effect on children who have one or both parents with the disorder, especially when it is the mother who has AS.
I could go on and on, but suffice it to say that I will be at the next FAAAS, Inc. conference!”