Autism & Normalization Ethics

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A behavioral specialist with background in graduate psychology told me a few days ago I should become an autism expert. I have no interest in this because it is bothersome to view the world between autism and so called normal. I like my organic mentality of self-acceptance and that I am that am.. I told her she was more qualified then me to understand people with autism as she has a vast more experience with individuals that have profound autism. Social politics aside to fit in because some with mild autism would call that discrimination especially when they themselves attend college and want no differentiation between low and high functioning politically. Some people are beyond reason.

The reason for this post is to define the idea of normalization ethically and figure out the social politics of normal vs. abnormal. From a hardcore psychiatric and psychological perspective my own behavior as someone with autism compared to those with very high functioning autism is abnormal perhaps from my reading online. I was told once by an international autism expert not to bother paying attention to online autism information as it is incorrect many times.

Firstly is normal a standard to achieve and for what reasons do even the reasons entail. Quality of life is the number one idea and not an external definition of normalcy. Hence if normalization was for societal efficiency reasons it would not so daringly be defined unethical but if emotional and physical adversity is manifest abnormal is bettered quantified ethically.

I'll use myself as an example:

If I have no or few friends and don't care is it healthy?

If I am only to attend certain places I have familiarly and or routine but have little desire and tolerance otherwise is it healthy?

Does having autism mean I must become something else or be persuaded to become more normal?

I think this comes down to choices and there seems to be allot of anxiety from self-advocates about being changed. Ultimately the law in California which applies to me called the Lanterman Act protects these choices. However chosen adaptation whilst still protected under the law needs innovation and I feel that some self-advocates are hopeless.

Nathan Young

Hi. I also live in California. Can you tell me more about the Lanterman Act. I have heard of it, but am not certain of everything that it entails.

To answer your questions:

1. No friends and don't care--Sounds like me a bit. For someone with autism, I would call this normal. Abnormal from an NT perspective. Though, to be honest, I don't believe that such a thing as normal exists and that it is all a matter of perspective.
2. Why should it matter where you go/hang out.
3. Again, normal is a matter of perspective. I think a better question to ask is does mean having autism mean I should try and reach out and socialize. My answer is no if you're happy with who you are, and can support yourself. But, yes if you desire friendships, to advance in your career, or to develop a romantic relationship. The reason the answer is yes in this case is that in order to do those things, you would need to put an effort to try and reach and out socialize, otherwise those goals will likely not be met.

Sometimes I think more social contacts for specific things would be good and I either or combined become to distracted or disconnected from the potential. I have been invited and was introduced to some people but I just want to leave. Relationships of romance seems like a good thing but relationships are somewhat intolerable but depends on the personality. Overall I am happy.

Lanterman Developmental Disabilities Act
From Wikipedia, the free encyclopedia

The Lanterman Developmental Disabilities Act (AB 846), also known as the Lanterman Act, is a California law, initially proposed by Assemblymember Frank D. Lanterman in 1973 and passed in 1977, that gives people with developmental disabilities the right to services and supports that enable them to live a more independent and normal life. The legislation significantly expanded upon its landmark predecessor, the Lanterman Mental Retardation Services Act (AB 225), initially proposed in 1969. The original act extended the state's existing regional center network of services for the developmentally disabled, while mandating provision of services and supports that meet both the needs and the choices of each individual.

The Lanterman Act declares that persons with developmental disabilities have the same legal rights and responsibilities guaranteed all other persons by federal and state constitutions and laws, and charges the regional center with advocacy for, and protection of, these rights.

In addition to persons with mental retardation, the regional centers are now mandated to serve persons with cerebral palsy, epilepsy, autism, conditions similar to mental retardation, or conditions that require treatment similar to the treatment required for individuals with mental retardation. To be eligible for services under the Lanterman Act a Person must also have a "substantial disability."

In 1976, the Lanterman Act was amended to establish the right to treatment and habilitation services for persons with developmental disabilities.

The Lanterman Act was amended in 1998, which called for an advocacy coordinator to be employed at each of the 21 regional centers of California, therefore, making it become a law that those employed through the regional center, would be prohibited from serving on a regional center board of directors, in order to avoid a conflict of interest.

In 2003 the definition of "substantial disability" was prospectively amended to require the existence of significant functional limitations in "three or more of areas of major life activity. Previously, to have a "substantial disability" only required the existence of a significant functional limitation in one of the seven areas of major life activity.

Rights of the Disabled under the Act

The Lanterman Act protects the rights of people with developmental disabilities by mandating rights including:

Services that protect liberty, provided in the least restrictive (most integrated) way.

Dignity, privacy and humane care.

Treatment, services and supports in natural community settings, to the greatest extent possible.

Participation in an appropriate program of publicly supported education regardless of the degree of disability.

Prompt medical care and treatment.

Freedom of religion and conscience, and freedom to practice religion.

Social interaction and participation in community activities.

Physical exercise and recreation.

Freedom from harm, including unnecessary physical restraints, isolation, excessive medication, abuse or neglect.

Freedom from hazardous procedures.

Choices in one's own life, including where and with whom one chooses to live, relationships with people in the community, how to spend time (including education, employment and leisure), the pursuit of one's chosen personal future, and the planning and implementation of a plan that fits the needs and desires of the individual.

The opportunity to make decisions and to have information understand to help make informed choices.

Key mandates

Section 4501: "The State of California accepts a responsibility for persons with developmental disabilities and an obligation to them which it must discharge. Affecting hundreds of thousands of children and adults directly, and having an important impact on the lives of their families, neighbors and whole communities, developmental disabilities present social,medical, economic and legal problems of extreme importance."

Section 4620: "In order for the state to carry out many of its responsibilities as established in this division, the state shall contract with appropriate agencies to provide fixed points of contact in the community for persons with developmental disabilities and their families, to the end that such persons may have access to the facilities and services best suited to them throughout their lifetime. It is the intent of this division that the network of regional centers for persons with developmental disabilities and their families be accessible to every family in need of regional center services. The Legislature finds that the services provided to individuals and their families by regional centers is of such a special and unique nature that is cannot be satisfactorily provided by state agencies. Therefore, private nonprofit community agencies shall be utilized by the state for the purpose of operating regional centers."

Seems to me that you are already becoming that autism expert. You might reconsider her suggestion from a different point of view. If your expertise is driven by your own ideas and not those of conventional wisdom, you might just be able to bring something new to the discussion. Don't confuse her idea of 'autism expert' with what you would choose to become.

actual experts are the ones who do not need to say they are, just that.

as previous poster stated, your doing well. We need a broader perspective, not more of the same. And you provide just that. Keep going!

Each person on the spectrum is their own expert and we each know what's best for us, as individuals.

My approach when it comes to professionals who insist on using pre-packaged ideas like 'normalization', is rather than try to justify myself within their framework, I simply operate entirely outside of their framework and let things happen as they happen. It took me a long time to work that out though. I used to really (both literally and figuratively) bash my head on the wall trying to make it function in ways that would allow me to comprehend things like that, but I later figured out my brain has its own way of knowing things that's valuable in and of itself. So now I just go my own way. I figure if there's value in their way, then people with their kinds of brains can handle it, my own brain on the other hand will be way more productive doing things its way. Diversity is a good thing.

Yes that is what I said to the behaviorist as well. As a professional autism self-advocate I focus on quality of life and inclusion which can be more generalized in the macro but by law as a facilitator individualized and tailored accordingly. I just do the macro awareness.

Nathan Young