A therapy that provides frameworks, education and support to the individual and the family.
The sad truth about ASD is that either the individual is moving forward in life, facing the challenges and progressing, or they are moving backward, becoming more rigid, and less functional.
Standing still is not an option.
Therefore, one of autism therapy’s main goals must be to keep expanding the individual’s world.
Because left to their own devices, individuals with ASD will nearly always shrink their world.
This is an especially important balance to strike with higher functioning individuals who have the potential to live independently.
Focusing on the Goal
While the most common therapies used to treat ASD have good qualities and benefits for many, they often fall short of the real goal – helping the individual moving forward in life so that they can reach their greatest potential, and highest possible level of independence.
Floor time, ABA, Social skills training, occupational therapy and others fall short of delivering the deepest and most meaningful type of therapy; the type that will most directly lead the individual to the greatest independence and to realizing their greatest potential.
Not to mention developing their greatest capacity to enjoy their life!
Most of these popular therapies do not focus on helping the individual master their own thinking, perspective, nor practical ability to manage the ups, downs, and inevitable difficulties that one must conquer to manage life and be successful.
These therapies also fail to prepare the parents for the REAL job of parenting a child with ASD, which is supporting the child in understanding themselves and then helping to clear barriers to make forward progress not only possible, but very nearly the path of least resistance.
Without that impetus being generated from home, therapy will probably not be enough to help the individual grow to their fullest potential.
The 3 Dynamics
- First, it must provide social, cultural and personal/emotional frameworks for the individual on the spectrum to understand themselves and succeed in a world that doesn’t always intuitively make sense.
- Second, it must also provide the same crucial understanding of the mental and emotional challenges to the parent or caregiver.
- Finally, it needs to support the parent in becoming personally and emotionally flexible enough, and well enough informed, to allow them to identify and remove the barriers that prohibit their child or young adult from following their own special path.
Lets’ deal with the last precept on that list first.
One of the biggest complications many individuals with autism experience is the rigidity of the parent’s view of what success means.
In other words, so many of us in first world countries have predetermined paths that we feel must be followed and milestones that must be achieved to consider life a success.
For example, many parents feel that succeeding in high school, going on to college, getting a “good job” and then raising a family is the prescribed path for contentment and success in life.
Others may be feel that completing high school and then training to work in the family business is the mark of success.
But that is too narrow a definition of success to be achievable for most people with ASD.
Life may look very different for them; it may be considered much “smaller” if you will.
When I say smaller, what I mean is that the person on the spectrum may be more comfortable in a 1-room apartment, than in a 4-bedroom house. They may not have high aspirations; and will be more comfortable and satisfied as a shift leader at a grocery store instead of the manager of the whole store.
They may desire to eat the same foods every day.
They may choose not to pursue a romantic relationship or have a family.
Some adults with ASD simply can’t manage that many variables and feel happy and content with their lives.
Living a more modest or simple life may be the way for them to enjoy themselves and experience their true potential.
This is often a hard fact for parents who don’t have a deep understanding of ASD and how it influences an individual on the spectrum and their world view.
Parents sometimes get caught in their own pain over the loss of opportunity and the experience they perceive their children missing out on. They may push for compliance to their own ideals.
For example, an individual with ASD may never form a relationship that will end in marriage.
As their parent, that can be perceived as a great loss, even though it may be what makes the individual happy and most comfortable with their own life.
Letting go of our expectations of “how life should be” for our loved one with ASD and embracing their comfort level is an important first step toward being able to help our children reach their full potential.
Let me give you a real-life example.
I know one family who has a 25-year son on the autism spectrum.
Until recently he was living in his childhood bedroom with the same wallpaper, paint and furniture that he has had since he was 2-year old. He liked it, and never wanted it changed.
His mother recognized that he needed to move forward and have more independence and more space in which to grow.
She recognized that he needed more room to grow.
If he was a plant, he would have been root bound, trying to grow in a pot that was too small.
This change of the status quo is a feat that tempts fate for parents with kids on the spectrum. When an individual with ASD is comfortable, making change is liable to create difficulties that did not exist before.
But done properly, this can be successful, and the threat of difficulty was not enough to out weigh the benefits of growth.
So, this mother took proactive steps to make room for growth and took steps to help reduce the discomfort for her son.
This family was blessed with the financial wherewithal to put a small addition onto their home to create and independent living space much like an in-law suite for their son.
This made an excellent and very therapeutic next step toward the independent living that their son will eventually do outside of his parent’s home.
Without having let go of their “shoulds” about life, these parents might not have seen this option as a possibility.
In antithesis of this success story, another mother I know pushed for her child to go away to college, even though he was struggling all through high school.
She felt that this was the “right” thing to do, and that if she could only get him through the transition from high school to college, she would be doing a good job as a parent and guiding (even if forcibly) her son down the path toward life success.
She was still holding dear to the vision of what she thought was success.
Unfortunately, as happens frequently, her son crashed and burned at college, giving up going to class after a few weeks, failing, and ultimately being expelled.
Sadly, for this young man, the damage was done.
His self-esteem and self image were so badly damaged by his failure that today he feels he is only capable of delivering newspapers.
This severe reaction to failure is all too common for young adult with ASD.
If you know much about ASD, you know how difficult (if not impossible) it is to create new neuropathways in this young man’s head around his abilities and prospects in life.
Recovering from this blow would be tough if his mother understood the autism. Lacking that, she faces an enormous and frightening challenge for which she is unprepared.
This happens in the very best, most loving and well-meaning families who simply are not able to support their kids in overcoming the barriers they encounter due to their lack of education about autism.
Make no mistakes about it, even when the best therapist is in the mix, the parent is a very important part of the autism success equation.
Social, Cultural and Personal Frameworks
Let’s circle back and talk about the first two precepts on our list: successful autism therapy provides social, cultural and personal frameworks for the individual to understand themselves and face life, and requires that the parent understand the individuals thinking, mental/emotional challenges, and the practical functional issues that arise as a result.
As parents of young adults on the spectrum, we need to be out in front of them, laying groundwork and clearing the barriers to THEIR path, rather than pushing them down OUR path.
Here’s another example of a success story built on the deepest understanding of autism.
A family I know have a high functioning 23-year-old on the spectrum.
He floundered through high-school and graduated. He drives, but has had many social struggles, difficulty with drugs, and then with the motivation to move forward in life.
His mother, a single mom divorced from a man with ASD himself, the mother worked diligently to understand her son’s difficulties, working through them one at a time with him.
Eventually after 4 years out of high school, the young man has found a passion for music.
His mom has encouraged his music, tolerating loud drumming late nights as he developed his interest.
She supported him by proactively helping him to set up a home music studio.
Now that the studio is in place, this young man is diving deeper and deeper into his interest in music and sound, and is currently beginning to pursue a diploma from a nearby trade school in sound engineering.
To ensure that he was able to manage school, she sent him to the facility to visit on his own.
He needed to experience the drive, figure out where to park, meet his advisor, tour the school and develop a high enough comfort level with the experience of going to class that the anxiety of the first day would not cause him to be derailed.
This was a therapeutic strategy to remove some of the pitfalls and the anxiety that her son might have experienced on his first day of class if he wasn’t prepared in advance.
At 23, this young man is finally ready to move forward in life.
The process it took for him to get there is very different from the process his fellow graduating classmates from high school needed.
His mother has had to let go of her dream that he would go to college, has had to endure some demanding circumstances, but has persisted in removing the barriers in front of him, rather than pressuring him to move forward on her timetable, and following her vision of what a “good life” should look like.
Ultimately, she was successful in helping him discover his path.
Had his mother insisted he go away to college with his graduating class, more than likely he would have crashed and burned, just like the other young man.
Fortunately, she was able to back off her idea of what her son’s path should be, and work with his momentum to help him continue to mature.
This mother’s success was dependent on her deep understanding of how autism influences the thinking, actions, and abilities of someone on the spectrum.
She learned that coaching a child with ASD requires both laying advance groundwork in front of the child, as well as recognizing and removing barriers or pitfalls that might arise.
Developing the ability to recognize and support the creation of independence by following your child’s needs and developmental level instead of pushing them to adhere to the norm is a skill that parents can only develop when they understand the social, cultural and personal/emotional frameworks that create successful autism therapy.