Your Child’s Trajectory
I am hearing more and more about people wanting to know the trajectory for a child with autism. First, let’s define what that means.
According to Merriam-Webster Online:
Trajectory: A path, progression, or line of development that resembles a physical trajectory (the curved path along which something moves through the air or in space)
For our kids, it means the path of their overall development from the time of diagnosis to adulthood. When I recently asked one of our doctors to help the parents of a patient whose teacher asked for his trajectory, he told me he’d be glad to dust off his crystal ball. With no sure-fire treatment for autism and with such a broad presentation of features, predicting the future is a tricky thing to do. Providers are, however, beginning to conceptualize this idea of a child’s trajectory in order to help parents to best help their children.
We asked Dr. Gary Stobbe, Program Director of Adult Autism Transition Services at Seattle Children’s Autism Center, to give us his thoughts on trajectory.
“There is not a lot in the research literature to help us, but what does exist seems similar to our clinical experiences. When I think about this topic, I think about 3 major trajectories that our kids with ASD follow. The first has been coined “optimal outcome” – that is defined by young adults that no longer meet criteria for ASD. They may have residual “quirkiness,” anxiety, or other residual symptoms, but disregarding their past history, they really wouldn’t qualify as having autism. Studies and estimates suggest this is about 1 out of 5 (20%) of all kids diagnosed with any form of ASD. I find this very encouraging.
On the flip side is the group of individuals that remains severely impacted. These individuals need “24/7” support in adulthood and also represents about 1 in 5 (20%). This group also makes progress, but in much more subtle ways.
The largest group (the remaining 60%) make slow but steady progress but still show signs of their autism. One of the most important points about trajectory for all individuals is how pleased we have been seeing progress extend well beyond age 18. Some of the best progress I see in motivation, self-awareness, and participation in self-improvement occurs in their 20s. This is important to recognize for parents, as we need to keep “fuel in our system” to take advantage of this continued progress. Continued opportunities for learning must be maintained even after public school disappears after age 21.
Another very important point is to recognize numerous factors that influence trajectory. Some of these factors (severity of language and social deficit, severity of restricted interest and/or repetitive behaviors, and co-morbid intellectual disability) are innate to the individual. Other factors (super-imposed mental health issues such as depression and anxiety, access to services, learning and practicing life skills, and disruptive behaviors) often can become the biggest barrier to optimizing the trajectory. Thankfully, most of these factors we can influence in a positive way with our parenting and through our partnerships with medical providers, mental health providers, educators, and the community as a whole.”
Your Trajectory
When my son was much younger, he asked me who would take care of his sister after we were gone – such a mature question for such a young mind. Before I could reply, he offered to – but then seemed to regret that offer as he conjured up a picture of his wild little sister and himself. He wasn’t able to imagine either of them as adults. Seeing the future from one’s current perspective can make it difficult to feel prepared to handle what lies ahead. Remember, you can’t see the end of the road you’re driving on.
When parents are new to a diagnosis, it’s easy to feel unequipped to deal with something that continues to perplex even the greatest minds. We think we have the typical learning curve that new parents have but then – wham – we’re thrown off that curve to this different, daunting one called autism.
Parallel Trajectories
While my grasp of physics is limited and my psychic powers of telling the future are nonexistent, I do know this much after all these years: I know that our kids do learn and grow and make progress. Sometimes not as much progress as we’d hoped for and often not at quickly as we’d like.
I also know that we parents change too. We learn and grow and make progress. We learn to be critical thinkers and to be endlessly creative in dealing with our challenging kids. We become more patient and more understanding and we learn to live with unanswered questions. We learn to find the best in others often when they are at their worst. We find courage and strength we never knew we had. We learn to grin and bear it and also the humility of asking for help because we truly need it. We learn that humor can be a great coping tool and that a little grace shown towards others can come back to us in spades.
The bottom line is this: the young child you have now will not be the same young adult in years to come. The inexperienced parent you are now will not be the same parent you are in years ahead.
Your child will change and so will you.
Veteran parents, you have been doing this for a long time. What wisdom can you share with parents who are new to a diagnosis and to feeling they have what it takes to handle this? By sharing your story, you help others!
Lynn, you are the best. You are always spot on to what is on our minds. I am so grateful (ETERNALLY) for you, the SCAC, Dr. Stobbe, etc., etc., etc. We can raise our family and live with our Tyler with the support that you provide. I can never convey the depth of my family’s gratitude.
Thank you for writing and sharing.
Kim
Kim, you are so very welcome! We so appreciate the feedback that we’re addressing issues that matter to our families. Please continue to let us know when we hit the mark. Or not! All our best to you and yours!
This topic was ripe on my mind today after just coming out of an IEP review for our son. Even just imagining my son working on the goals set out in the new IEP and achieving them within a year can seem like a world away, but I think about where he was in August, before starting therapy at Children’s and before starting his current preschool – I might have thought impossible what he’s been doing recently! There is a lot of back and forth, up and down, but overall we see progress. I don’t know what his trajectory is for the distant future, but I do have my dreams that I can barely speak out loud, and I have my “worst case scenario”. It helps, though, to see other families around and hear stories of parents who are simply grounded, happy, and full of love no matter what the trajectory.
Thank you, Emma, for the beautiful reply. You captured this so thoughtfully and eloquently. With a teen on the spectrum who continues to need 24-7 care, I know that her outcome is for many parents the “worst case scenario”. Yet she is A-Ok and so are we. We will always have hope – as every parent should have – that our child will learn and grow and be his/her best with the love and support of family and many others who are there to help.