Published on 11/26/13 by Ginger Rowan, LMFT
As a practicing MFT, I have had the privilege of working with many families with a member on the autism spectrum. I have seen children as young as 18 months with scripted speech and limited play and the impact the diagnosis has on young parents. I have also seen veteran parents whose ASD children have developed and evolved through the years. There can be a world of difference between the two groups.
Of note, the DSM-5 has redefined the diagnostic criteria for Autism Spectrum Disorder (299.00). It’s been made simpler really, and is based on two criteria; deficits in social communication and restricted repetitive patterns of behavior. There is a need to also add the severity criteria ranging from Level 1 to 3. It is now possible to also give the diagnosis of Attention-Deficit/Hyperactivity Disorder (314.XX) if the child meets the criteria.
When a parent suspects “something is not quite right” with their young child; limited or no eye contact, no reciprocity in interactions, atypical play patterns, they turn to their pediatrician or family doctor. Sometimes doctors dismiss the parents’ concerns, but I always tell a parent to trust their instincts. A study done by Johns Hopkins University Gazette (May 15, 2007) reported that only 8% of 225 pediatricians in Maryland and Delaware said they screen for autism. Parents should insist on a screening such as M-Chat or the Social Communications Questionnaire. A definative outcome simply raises a red flag and a more intense comprehensive evaluation can be done. As MFT’s we can diagnose Autism, however, in Pennsylvania only licensed psychologists, certified school psychologists and physicians can provide a diagnosis of autism that qualifies children for specialized educational services for Medicaid reimbursement. It is not unheard of to have a 9 to 18 months wait for these extensive evaluations which can be very frustrating for the family because the greatest benefit is derived from early services.
If parents do receive an ASD diagnosis, they are thrust into a world for which they are scarcely prepared. Some of the recommended services could include early intervention through county Intermediate Units, speech and language services, Occupational Therapy, Physical Therapy, behavioral interventions through Wraparound, Functional Behavioral Assessments, social skills groups and parent support groups. It is important for families to be supported through this process and that the services begin as early as possible to provide the most positive outcome.
Depending on the severity, some children can be diagnosed before 12 months of age. County Mental Health/Intellectual Disabilities services provide supports from age birth to 3. Services through the county Intermediate Unit usually begin at age 3 and go to age 5. When the child begins kindergarten the school district is responsible until the child is 21. I try to point out to parents that the child they have now, who may be distant, not sleeping well and/or behaviorally challenging may not be the same child in a few years- just like with “typical” children.
Some of the issues couples can face include mourning the loss of the dreams they had for their child, the need for blame (it must be someone’s fault) so as not to feel guilty, shame regarding themselves and to a lesser degree their disabled child, trying to do recommended strategies “perfectly” so as not to cause further “harm” to their child and fury at those who don’t do it “right”, and anger that they have to face what can be a very difficult situation for which they are unprepared.
It’s relevant to know that all family members are affected. Grandparents, who themselves have raised children, may have no idea how to relate to a disengaged child. It can be frustrating for parents who have constructed effective behavioral strategies at home to have them dismissed by their own parents. I have found that the primary emotion behind this behavior is fear and family therapists with a systemic view can be very helpful in processing this with all concerned.
Siblings too are greatly affected by autism in the family. Sometimes they become the “parentified” child or are ignored as parents struggle to keep up with all the recommended services or process their own emotions. Sibling support groups such as Sibshops or individual therapy can be very beneficial to process the resultant emotions, such as resentment and anger.
For those who are over 21 with an ASD diagnosis- with age brings change. However, our society and community are not significantly prepared to offer employment and life sustaining opportunities to these adults. Many ASD adults struggle with social skills but desire friends and intimates, just like everyone else. As MFT’s we know that we heal through our connections with others. Often the ASD diagnosis becomes a much smaller part of someone’s personality as they seek out friends, a job and a meaningful life. Some high functioning ASD adults become doctors, scientists or IT professionals and I know of one young man who became a meteorologist and married. At the Bureau of Autism Conference several years ago, I heard a young man, who proudly worked as a janitor, express that he wanted the same things as everyone else did. He loved his job and enjoyed spending his income on a small apartment and comics from the local book store. He was very happy that he was self-sufficient. This is not always the case and some with an ASD diagnosis are more limited in their options. But MFT’s can help an ASD adult fit into their community and to better understand how to relate socially.
In short, families with a member on the spectrum go on a journey. It is often one that no one wanted to take but it can be a great gift. In the beginning, no one knows the outcome but all members learn more about themselves and, hopefully, about each other. And they can teach their therapist a thing or two about power, perseverance and love.
Ginger Rowan, M.S., L.M.F.T. has been working with special needs children and their families for over ten years in her private practice and not-for-profit (Let’s Go Play) in Media, PA. She has submitted documents to the State of Pennsylvania to be licensed as a behavior specialist. You can find her on the web at www.gingerrowan-marriagefamilytherapist.com or www.letsgoplayinc.org.