Should the autism diagnosis be obliterated?
While autism is part of an individual, it is not the entire person. It does not define their personality or what they are capable of accomplishing in life.
Not Their Diagnosis
Many people on the autism spectrum take issue with talking about autism like it is a disease, or as if it is something that they are subjected to, or something that their personality, talent, and abilities are hidden behind.
They don’t feel it is a problem that needs “fixing,” or a disease that needs “curing.” Instead, they accept it is a normal, integral part of themselves and their thinking.
I respect and support that experience. That’s just one of the reasons that I don’t advocate the obliteration of autism, but rather work to promote the necessity of understanding and embracing the unique world view experienced by a person on the spectrum. As part of that, I support them in finding their way to a happy and functional life with a brain that simply works a little differently than most.
One day I asked my own 24-year old son who has ASD “…If there were a pill to take that would eradicate the autism, would you take it?” His answer was a resounding “No! I like the way I think, give it to someone who needs it!” There you have it! Individuals with autism don’t see their thinking as a problem, and yet they often struggle with carving out a successful life for themselves because the world is geared toward the world view, thinking and functioning of the majority who are labelled as ‘neurotypical.’ (Click here to read more about Different Doesn’t Equal Bad.)
Shifting The Paradigm
Even while embracing the truth that autism is part of the individual, there are substantial benefits in shifting the paradigm to see the autism as separate from the individual, whether you are a parent, educator or therapist. Your perspective will shift in profound ways, and things that were previously unclear become easier to discern.
Bear with me as I explain.
This is the diagram we use to help parents. It demonstrates a paradigm shift that I advocate people adopt. It shows the need to align ourselves with the child to team up against the autism, rather than leave the child alone to figure out how to navigate the world with autism on their own.
If your hackles are up because I am implying that many parents, educators, and therapists don’t achieve this shift, that is exactly what happens when ‘traditional’ parenting, teaching and therapeutic techniques are employed in the treatment of ASD!
Intuitively you can see that the Autism vs. Us scenario is preferable, but let’s detail the reasons.
The Them vs. Me paradigm has the end result of holding the individual solely accountable for navigating life with autism; it all but abandons the child with a major life dilemma to figure out – “…it makes sense to me, why do things always go wrong?”
Uninterrupted, this frustrating failure pattern naturally escalates from anger, confusion and meltdowns in younger kids into the depression and anxiety, low self-esteem, lack of motivation, and the unwillingness to even try that we see in young adults with ASD. Not to mention the complications many adults with ASD experience with drug and alcohol abuse as a result of self-medicating to cope with this dilemma.
While technically the autism may be integral to the person, when we can separate the person from the autism in our own thinking, employing the Autism vs. Us paradigm (right), we will adopt a new perspective that is more powerful and supportive therapeutically. This simple change may seem intuitive, and most people probably think they do it automatically, but it requires real focus and intention.
When you do it successfully, it categorically changes the perspective on, and treatment of autism, by resulting in numerous and dramatic game-changing perspective adjustments and emphasizes the need to understand the autistic world view.
How The New Perspective Works
Here’s what happens when we take this shift in our approach:
1. We stop taking his or her behavior personally: We are now free to recognize the unwanted behavior as a signal of the child’s distress related to autism, not a signal of the failure of the parent, not a sign that the child is disrespectful, and certainly not an indicator of anyone’s lack of effort! Much shaming and blaming are removed from the equation, and we can proceed with a new found curiosity!
2. A deeper desire to learn to think like the individual on the spectrum develops: Once we have reduced the emotional reactions, we are now in a position to recognize that all behavior has meaning, and we now have an entirely different set of meanings to consider than we had before. When we step inside the autism with the child, we can work toward understanding the child’s behavior and what it is really communicating about their world view, and help them to resolve their doubts about themselves and their world.
3. Recognize the difference between Can’t and Won’t: As we grow in our understanding of the difference between the individual and the influence of the autism, the difference between can’t and won’t becomes clearer. The inherent limiting issues of autism (they can’t see things or behave a certain way) can be identified as areas for education, support or accommodation, rather than being attributed to bad attitude, lack of willingness, or simple stubborn refusal (they won’t see things or behave a certain way). This shift alone eases the burden for the individual on the spectrum.
4. It becomes easier to avoid extreme thinking and negative self talk: Especially for parents, when we take this new less emotionally based approach, we can reduce or avoid the “always” and “never” thoughts that keep us from falling victim to the frustration and fear that render us powerless, keep us stuck, and leaves us upset. An upset adult isn’t in a position to help a child with ASD navigate the world.
5. Temporarily suspend or soften expectations and judgments: When we recognize that our own deep social expectations, which we hold so dear, are created by our own worries, fears, assumptions, and judgments of the “right way” to live, we can begin to loosen the restrictions on individuals with ASD and accept less than 100% perfect adherence to the prevailing social winds. This eases the pressure on the individual who is living with and struggling with the autism.
6. Be gentle with everyone involved and honor the difficulty of their journey to this point: When we see the individual as separate from the autism, we recognize their struggle with a world view that comes naturally to them, but doesn’t afford functional success. We recognize that this is not a problem of their own making. Now compassion surges to overtake frustration and anger in the moment, which dramatically increases the likelihood of the child’s success and your ability to guide them to success.
7. Recognize, rehearse and repeat the positives: When we recognize that the child is separate from the autism, we can also recognize the way it feels to be continually disappointed with outcomes, or told we are wrong and corrected. This is frequently the individual with ASD’s experience. With that in mind, learning to support them by providing positive feedback in a format that makes sense to them becomes easier and replaces the punitive consequences that often are enforced in the Them vs. Me paradigm. This affirmation of the child is all too rare for them, and can make a huge impact on their long-term mental health. Remember, these kids are being corrected constantly!
8. Imagine the individual’s sense of relief at FINALLY being understood: When we see that autism as separate from the individual rather than something they are doing on purpose, we can honor, support and accept the individual in a way that provides great emotional relief, if not much needed validation, to them. (Click here to read more about our Mindset Makeover training.)
The Pentagonal Team Approach
This shift can take on an even more profound meaning when the entire team adopts the shift in perspective. We know that individuals with ASD are best served by consistency; when all environments are on the same page. When we all see the autism as something that is separate from the individual, and yet recognize that the individual must learn to function in the real world by viewing life through that different lens, we can create the most powerful scenario of all. Now we have a Pentagonal Team approach: the child, the parents, the educators/school and therapist vs. autism!
This scenario rarely happens! Too often we have parents upset with the school and the school feeling the parents aren’t helping enough at home. The therapist is dealing with a parental issue or an issue between the parents that is blocking progress, or a difference in perspective between the school and the therapist. This often leaves therapists tilting at windmills instead of directly taking the autism head on, helping the individual develop functional skills by embracing their autism, understanding it, and finding comfortable ways to either overcome challenges or to compensate for difficulties.
Getting “Inside The Autism”
What gets lost in the shuffle?
The child and the autism. When we can isolate the autism by recognizing common issues, thinking patterns and responses to the world, we can begin to create a clearer picture which crystalizes the problems of autism without the detriment of the emotional quagmire that can develop when we take a more factional approach.
Separating the individual from the autism supports a clearer definition of the autism.
It is critically important that the professional get “inside the autism” with the individual, rather than operate from the outside in. This means having a clear understanding of how the world view of someone on the spectrum develops, and how to support them in creating solutions that lead to the ability to have a healthy and functional life.
“It is critically important that the professional get “inside the autism” with the individual…”
Isolating autism by seeing it as something separate from the individual (albeit that paradigm is perhaps inaccurate) is a perspective that supports long term therapeutic goals for an individual with autism. The natural outcome is the reduction of shaming, blaming and guilt (oh my!). Plus, we see marked improvement in the pentagonal relationships which can contribute to a more unified understanding and therapeutic approach among those who have the most impact on the future of the child with autism. (Click here to read more about our Training For Professionals.)