Sunday, March 1, 2015
When Do I Tell My Son that He Has Autism?
Please help me, I’m very confused and don’t know where to go next. My son Brian, who is now 23, was diagnosed with ADD and PDD and according to his therapist is on the autism spectrum but with mild symptomology. He has been under the care of a Psychiatrist for the past 10 years. His IQ is normal, as is his language and communication skills. He has difficulty with problem solving and sometimes at giving answers that are appropriate responses. He will also at times talk about topics that he has no knowledge of. He doesn’t act like most adults at his age. He doesn’t seem to be able to understand the basics of life, as in understanding the value of money and importance of saving. He can’t understand why he can’t have a new car while the lease of his current one is still in effect. Even though we try to explain this to him, he just cannot understand, as if what we are saying makes no sense to him. Normal thinking patterns seem to be absent. He has a job making about 300$ a week, yet he doesn’t contribute to the house or pay for anything. I’m not sure anymore what part of his behavior is associated with PDD and what part is pure manipulation. His therapist feels that almost all of these symptoms are part of his disability and what is clear to most, are really things that Brian cannot understand and that the way he thinks is part of his disorder. Do you have any advice of where I can go or how to have Brian evaluated further, if that is even necessary? I can’t seem to find any specific tests that can be administered to diagnose autism or as Brian has PDD with a very high level of functioning and a normal IO. He is very social and communicates with no problem. Thank you so very much for your help. Also what is your opinion on if a child should be told about being Autistic?
In addition to working in the autism spectrum disorders diagnostic clinic at The Ohio State University's Nisonger Center for almost ten years, I am the mother of three grown sons, two of whom are on the autism spectrum. My youngest son is 27 and has Asperger Syndrome and ADHD.
The diagnostic tests for autism spectrum disorders are based on observations by professionals and reporting by family members and teachers.
Aspirations, a program developed at the Nisonger Center in collaboration with OSU Medical Center's Department of Cognitive Neurology, helps young adults on the autism spectrum work on employment and social skills issues. (For further details, please visit http://www.aspirationsohio.org/.)
While no two individuals on the spectrum are alike, and, in fact, may be very different, some issues similar to those you described have been reported by the families of young adults who have participated in this program. There are tests to measure what is called "adaptive behavior" and there are actually instruments to assess elementary and adolescent language-based reasoning called the Tests of Problem Solving.
Studies have shown that there can be sizable gaps between the tested IQs of adolescents on the autism spectrum and their scores on adaptive behavior scales (which should have similar numerical scores in typical individuals, with 100 as average). Even gifted adolescents on the spectrum have scored close to the range of people with intellectual disabilities, so what you are seeing may not be manipulative behavior.
Further assessment may not be necessary, but you could pursue a neuropsychological evaluation. You may wish to consider additional counseling for him to help him to develop strategies to address his reasoning approaches.
You may find the transition guidelines information available at www.ocali.org, the Ohio Center for Autism and Low Incidence, of interest. In addition, you may wish to review Appendix 1, "Asperger Syndrome Characteristics," in the Asperger Syndrome Employment Workbook: An Employment Workbook for Adults with Asperger Syndrome, by Roger N. Meyer (who has Asperger Syndrome), Jessica Kingsley Publishers, 2001.
While your son was diagnosed with PDD-NOS, there are significant overlaps between PDD and Asperger Syndrome. Professionals have proposed changing autism spectrum diagnostic labels to "mild," "moderate," or "severe autism" within the next two to three years.
With regard to telling a young person about an autism spectrum diagnosis, most adults on the spectrum feel that sooner is better than later. They report feeling different because they realized they didn't process events and sensory experiences the same way other people seemed to. Many sensed they didn't quite "fit in" by the time the reached their late teens or early twenties and might never be quite like everyone else.
Being told their diagnoses tended to be something of a relief because there was an explanation for all of these issues. It is worthwhile to discuss when and how disclosure to others is appropriate, but the consensus is that knowing as much as possible about their issues is very helpful.
School children usually are often told as soon as they are mature enough to understand. Some parents elect to present information about the diagnosis to their children's classmates or request that a teaching professional do so. The other children have often wondered why the child was different, and knowing an explanation tends to foster greater acceptance.
Patricia H Cloppert, BSFS
Faculty Parent Advocate
Program Manager for Parent/Family Support
OSU Nisonger Center
The Ohio State University