Is autism a disability?
After more than 14 years of writing extensively about this, I can say unequivocally that no matter what you say about autism, or how caring you are, or politically correct you attempt to be, someone will find it offensive.
It has become very clear that discussing autism is controversial.
You have to be really careful how you talk about autism, and what you say, because there is always someone with an emotional charge that will read into what you say based on their own perspective and issues.
The Two Extremes
There seems to be a continuum.
On one end, there are those who proclaim that autism is not a problem. Rather, it is something that should be accepted, understood and even celebrated as a natural and “normal” way of processing the world.
To this way of thinking, autism isn’t a “problem” or an “issue” to work on.
And if you mention the word disability or struggles of those individuals and their families, the folks in this camp get fired up fast!
On top of that, they have little appreciation or understanding should a parent express frustration, disappointment or challenges with autism.
To this group, it seems that it is almost offensive to even identify the autism at all.
At the opposite extreme of the continuum, we have those who would fight for the position that autism IS a serious disability.
“It’s almost impossible to walk the center line and discuss the subject at all, because often those most militant residents of the extremes are ready for a fight (instead of a discussion or attempt to understand a differing perspective) if they perceive you are out of line!”
Those at this end see that autism is difficult to manage and to live with and causes suffering and struggle for those who have it and their families. (Click here to read How Do You Find Relief from the Difficulties of Life with Autism?)
People on this end believe that those on the autism spectrum should be given special accommodations to navigate the world, and that the world is way behind in providing those accommodations.
When you speak from one extreme or the other, those who fall in the opposite camp feel insulted, get angry that you are so insensitive, and even feel that their reality (the right way to see it) is being ignored.
And that happens regardless of which end of the continuum you inhabit.
The Bottom Line
The bottom line is that autism is still a loaded word/concept, with much stigma attached.
It’s almost impossible to walk the center line and discuss the subject at all, because often those most militant residents of the extremes are ready for a fight (instead of a discussion or attempt to understand a differing perspective) if they perceive you are out of line! (Click here to read Limitations Redefined.)
Here are some examples of what I mean.
On the one hand:
- If someone has autism and is managing in the world, they may feel offended at having it called a disability and want to be seen as “normal” or not disabled. They are offended by being labeled at all as if the world should be able to accept them as they are without noticing the difference!
- These same individuals often will accuse those at the other end of the spectrum of being disrespectful even when they are trying to have an open discussion, and demand that people with autism be afforded not just respect but immediate assimilation.
- When you write about autism or speak and you say “autistic people,” you hear protests from the group who feel that the person should always come first and that phrase should always be “people with autism.” They cite the example of people with cancer, and remind us that you would never say “cancer people.” But there again, inherent in that comment is the belief that autism is something negative, rather than simply a descriptive adjective like blue-eyed or brown-eyed. (Click here to read more about Secret Beliefs About Autism.) It is fine to say blue-eyed people! (Secretly, I think those that protest this are keeping the negative stigma alive themselves).
- If you talk about autism as if it is something that is disease-like, and requires “treatment” of some kind to “overcome,” these same people will berate you for the implication that they are sick, or that the autism is not just a part of who they are, and they like who they are!
- Some people with autism also find it disturbing to discuss the autism at all, saying it is “just the way I am, and I like myself.” Which is a great perspective yet may discount anyone else’s experience of interacting with them.
- A simple phrase like “autism impacts the whole family” (Click here to read more about How Autism Impacts the Whole Family.) can drive the pro-autism-acceptance people to writing negative responses implying that the author is insensitive and unfairly implying that autism is a problem.
On the other hand:
- If you talk about autism as if it is natural and without issues, individuals with autism who are struggling to fit in and parents, spouses or family members that have struggled to build a healthy, or effective relationship with an individual on the spectrum will feel you have disregarded their experience.
- This “not a problem” perspective would send every activist and parent trying to get services from the school, support from the state or federal government, or simple understanding from family and friends to the streets in an uprising. They would have a conniption!
- Not only will those individuals strenuously object, but they will be outraged that you are denying their “reality” as well as ending services their child desperately needs.
On top of that:
- Parents of children on the autism spectrum will clearly proclaim the fact that parenting a child with ASD is a different experience from parenting a child who is not on the spectrum.
- Most parents will also tell you that it is parenting on steroids, requiring much more patience, intestinal fortitude and flexibility – especially with those around them that don’t understand what is involved with autism .
Therapists that work with individuals with ASD have to walk the line, being uber-sensitive to the specific views of the individual client. Of course, this level of sensitivity is a common trait for most therapists anyway. But a mis-step here can create additional barriers to effective therapy.
It can be a unique balancing act.
Seeing Both Perspectives
Both perspectives are valid, but it’s very difficult (if not impossible) for most people who encounter autism in their lives to be able to see both extremes.
Often, they are entrenched in their opinion based on their own experience, and they become intransigent, obstinate and even obdurate!
As a result, one aspect of autism therapy might be about helping the individual to, at the very least, recognize that this continuum exists, if not to move them a bit more toward center.
And if it’s hard to discuss the subject without risking offense, it is even harder to help someone manage their feelings about, relationship to, and expectations of life with autism in yourself or a family member. (Click here to read more about how Appreciation Makes Life With ASD Easier.)
“There is so much variation in the severity and the manner in which autism affects individual people and their families.”
The reality is that the current situation is a “Yes/And” state of affairs.
There is so much variation in the severity and the manner in which autism affects individual people and their families.
Some families can take the autism in stride and manage beautifully with very little support.
Other families feel strained by the financial and personal resources required by children who are more severely impacted by the autism. For example, individuals who can never be left alone because they are dangerous to themselves or to others. These individuals will probably need full time residential placement at some point in their lives.
As therapists, you need to know there is a very large population in the middle.
As a matter of fact, higher functioning individuals with autism is where a great deal of the growth in the population is occurring. These are the people you can serve and really make a difference in their lives!
These are the individuals who are “on the bubble,” so to speak, and proper therapy and support can make all the difference to their success. (Read more about How do we find a therapist who “GET’S IT?”)
I have two children in that arena, and as they grow into adulthood (they are 23 and 25), I can’t believe how much of what we worked on therapeutically over the years has paid off by being integrated into who they are becoming as adults.
With autism therapy, the results become more apparent as time goes on and small adjustments made today create much larger impact as the child’s life and trajectory changes.
Improvement in outcomes for these individuals is not only possible, it is inevitable given the right therapeutic approach.