We welcomed our first-born son into the family with all the excitement and hopes any parent would have. He arrived a bit abnormally with a few minor complications at birth, however things ran smoothly thereafter. He began to crawl and walk as he seemed to hit all the markers any child should as he begun his growth and developmental journey into this new life.
As new parents, we excitedly read all we could to parent and raise him the “correct way”. Days and nights were spent teaching, watching, and supporting this new child as he grew. However, we soon noticed there were a few things that just didn’t seem to be in line with what we were reading. As he grew older general expectations of social and behavioral markers were not being met. Anything that appeared to be an aberration or deviation from what we had learned came to us as a thing to worry about and to address. An example of this was his inattentive nature when we were engaging with him.
After several visits to doctors who specialized in hearing and speech resulted in him being “normal” but just that he was “interested in other things” rather than us and that we had nothing to worry about. Later when he was in school environments, we encountered more differences in behaviors from the traditional student to the point that the teachers felt he should be assessed for ADD (Attention Deficit Disorder) as well as be tested for his general intellectual ability. All of which we responded to with diagnosis and medication and tutoring regimens. However, none of these seemed to work in the long term as prescribed.
As parents we were struggling to understand what was happening. For ourselves we questioned if we had done or were doing something wrong that either created or exacerbated this situation. It was frustrating and scary as we waded through poor behaviors and performance in school and in relationships as our child went through all the stages of development to young adulthood. We did not know what to do and this seemed to be the hardest thing to manage. We felt terrible that we as his parents did not understand or know the answers to the questions of his situation. We dearly wanted to have the answers and to help.
This all occurred in the early 90’s and 00’s. Back then we didn’t really know how diverse and complicated the diagnosis and understanding of someone on the Autism Spectrum could be. It has been said that if you meet one person on the Autism Spectrum, you have met just one person on the spectrum. It is that diverse.
I know for me as a parent, when I was able to come to terms and even embrace the different path we were going to tread, I was empowered to make changes that lent to support of my son to reach his unique goals.
The first thing that happened was that we decided to approach it from a different perspective. We began to look at all the behaviors as a reflection of his normal reaction to the world around him. This was still a struggle due to the world he lived in didn’t fully understand his specific needs. However, as we softened our approach, we learned more of how to intervene and even predict behaviors to the point we were able to support new more appropriate behaviors to immerge.
As time went on more and more was being understood in the medical and psychological community regarding this diagnosis and treatment. We then began to encounter others that understood our situation and we found a reservoir of information from studies and research that came available. To finally have some answers and even potential solutions proved to make our lives much more predictable and enjoyable.
Now that our son is in his 30’s, we have developed healthy ways to support him as he continues his journey of life. I share this personal experience now from a place of experience garnered over 30 years to express that you are not alone in this journey as well as to share there are ways to get information and support. There are ways to get information and help to navigate this unique path.
In summary, here are some thoughts of what proved to be helpful for us.
- Get a good assessment. This may sound elementary, but to have a full assessment in all the domains of life is the first step. What you don’t know or understand you can’t really treat or address.
- Find therapists that understand and have been trained in this area of treatment. Regular therapies are good to a point but having a professional that has been certified and has specialized will aid in higher therapeutic returns
- Find a community that you can communicate and learn. Having others you can talk to and learn from helps you to know you are not alone. As parents we often feel we are the only ones that are going through this experience.
- Get to know school administrators and teachers. This was a very important part of our success with our son. Many of his teachers and even administrators just did not know what to do and unfortunately my son would fall through the cracks. We advocated for added services and support that proved to give him a pattern of success that was much needed in the school environment.
- Meet potential employers. Meeting with and informing employers of the specific subset of skills and limitations is vital. We found that the more they were prepared in knowing what my son brought to the workplace increased everyone’s overall success and satisfaction.
Here at New Directions for Young Adults we have developed a program to support students and their families to navigate this unique diagnosis. Individuals that have spent their professional careers in developing an understanding of how to properly diagnose, treat, and support families on this journey. We have found how important it is to have a better understanding of the nature of the problem and then to have a specific plan that will improve the possibility of the highest outcome.
