For those who live with autism, finding acceptance is a very difficult thing. While government recognizes the condition, they do not always accept the autistic as equal in legal stature to the neurotypical. As a result, discrimination is rampant in many government agencies.

Societal Integration

Finding Acceptance

Government policy for the past few years has been to transition autistic individuals out of institutionalized care into mainstream residential communities, and to improve the chances that anyone can live an independent life. But to be truly independent requires an accepting community. Without the full community accepting the autistic citizen, to the fullest measure possible, there is no equality, no justice, no reasonable accommodation.

Instead, intolerance, discrimination, crime and injustice will continue to adversely affect those who need the greatest amount of help without the education of the community about this expanding condition. The key to a successful integration of any group previously segregated, is always education in any form. Change evolves from the illumination of the public.

Adaptation to new ways is not easy for any society. The process takes time, however the time can be reduced through a commitment to change by businesses, government and professional classes. Acceptance is essential for change and critical to integration.

Any plan to integrate the autistic into mainstream community life requires acceptance to make the change effective. Without it, each autistic person mainstreamed is like a martyr to the lions; subjected to mistreatment even in the simplest things, and unable to find reasonable employment. This is why today we have 99% awareness and 90% unemployment, with an acceptance rate roughly equal to the population directly or indirectly affected by autism. Awareness is clearly not sufficient to make life in the community safe for the autistic citizen.

Community Living

Life for those autistic citizens in the mainstream community can be extremely difficult, more so perhaps than in structured institutional care facilities. Independence has it’s merits, but in a world absent of acceptance, the price paid for such liberty is often the denial of rights and happiness, if not life itself.

The lack of coordination between community education about autism, and moving the autistic into the community in greater number is nothing less than dangerous. It is like putting a kitten into a den of wolves. The autistic individual must interact with retailers, medical providers, government services, and others, and will need professionals at some point, to help with certain services like tax preparation or legal matters.

The autistic individual’s day might involve public transportation, a visit to the doctor, some shopping, going to work, or out to dinner with family. All along the way, facing formidable challenges with bus drivers, doctors, receptionists, co-workers, supervisors, store clerks and of course, total strangers – none of whom are trained to interact with autistic customers or neighbors. Coping with social interactions is difficult for those with autism, so imagine the simple interaction of paying bus fare. It can be hell for them when the driver barks out “Exact change only!”

For an autistic person who suffers from some of the more difficult comorbid conditions or behaviors, being in public or integrating into society can be an impossible challenge. Imagine seeing someone on the bus who’s smacking or punching himself in the head, rapidly and with strength. Or an adult who begins crying and screaming, even thrashing out, or attempting to harm himself. Very likely you’d call the police. They don’t understand autism, so the person having a meltdown is arrested.

Very often independent living autistic adults discover they need more help than anyone thought, not because of their own lack of capacity, but because of the incapacity of others to understand them. That lack of understanding results in traumatic events in the life of an otherwise capable autistic citizen. It isn’t that the autistic need caregivers so much as protectors and guardians. They need protection from the rest of society, and its lack of acceptance or understanding; from its ignorance and foolishness; from the inhumanity of man towards his fellow man.

It is that inhumanity that government planners have not considered well. Thus integration into society, while a very good thing for autistic citizens, requires more than residential facilities to house the autistic, but to teach society how to be humane. The challenge isn’t the autistic, it’s the neurotypical, uneducated, irresponsible person whose prejudices and lack of consideration cause harm to the autistic.

Overcoming NIMBY

When real estate developers who build housing for the autistic announce plans for such housing, neighbors begin to scream “Not In My Back Yard” – protesting at town hall meetings, filing objections at zoning hearings, and even sending letters to the editor of the local newspaper. Of course, these vocal neighbors don’t give consideration to the feelings, needs or mental health of their victims. Yes, victims! They’ve no thought of how their negative expressions affect the autistic.

‘Not in my back yard’ is nothing less than prejudicial and harmful to those among us least capable of fighting back. It simply polarizes the general community against the autistic. When the autistic eventually move in, they are met with fear and loathing, rather than welcoming smiles and apple pies. Doors are shuttered to them, as are hearts and minds.

The developers rarely consider the long-term impact of local sanist discrimination or the inability of the residents to integrate into the community because of the failure of the local community to adapt to autistic neighbors. They are not concerned with making life good for the autistic, but with providing good housing. It is the responsibility of society to police itself to understand the autistic. But does it? Obviously, it can, but it takes time and learning.

The Aging of Autism

Every parent of an autistic citizen asks the critical question “What happens when I’m gone?” The answer remains a mystery up to the point of the parent’s passing. Many parents have set up ‘special needs trusts’, which do a wonderful job of protecting the financial needs of the autistic child as an adult. Money, however, doesn’t fix everything. It can’t make people learn about autism, or become tolerant.

When a parent dies, and the autistic citizen is alone, without the loving advocacy of his or her parent, they are often subjected to the discrimination and difficulty from which the parent sheltered them. The protector gone, the autistic citizen is often on their own. Siblings may try, if they exist, to protect, but often they cannot replace the unique bond between a parent and their disabled child, nor can they provide the same quality of love.

Having been sheltered all their lives, the autistic adult is incapable of handling their own support. They can’t cope well with the oppressive nature of modern-day society, or the hustle and bustle of daily life. The system isn’t structured to provide the same nurturing support given by parents. It doesn’t even help siblings or other family to provide care for the family member.

The result is that most autistic adults end up being introverted and losing any social skills they previously developed soon after the parent dies. The aging autistic citizen is dismissed by government as if they do not exist.

Falling Off The Cliff

When an autistic adult reaches middle age and up, their care resources have diminished so greatly that death is the only thing they await, and their only relief. Medical practitioners, for example, do not know how to care for elderly or middle-aged autistics whose medical needs are as great as the neurotypical aging population, if not greater.

Often, the needs of the autistic is made worse in middle to later years by their behavior in youth. For example, many autistic children have very limited diets, eating lots of chicken nuggets – high in cholesterol and carbs. These often result in high cholesterol, diabetes and other cardiac and gastrointestinal conditions. Without doctors trained to help them, their care is usually absent or diminished resulting in death at earlier stages than someone neurotypical with similar conditions.

Few if any research dollars or government resources have gone into studying or fixing this. The net result is an aging population of autistic citizens presently not even on the radar of government. Little discussion has been had about elderly and middle-aged autistic individuals for a simple reason: the condition has only been dealt with for about 50 years, so anyone who was autistic as a child 50 years ago, was likely not diagnosed until later in life and thus probably did not get the benefit of currently available resources and was likely not even counted as autistic.

Government metrics for autism are grossly inadequate to track and count the real numbers; an argument we’ve made for some time, with which many members of Congress agree. America has a huge, uncounted population that were born prior to the early 1960’s when autism first caught the attention of medical experts in the United States. Aspergians fared even worse, as it wasn’t even discussed here until the early 1980’s when a British researcher found the studies done by Dr. Hans Asperger during war-torn Austria in 1943.

As the children first counted in the mid-1960’s become elderly, there is a significant lack of resources available to them. If they did not work and earn sufficient requirements to collect Social Security retirement benefits, if they do not get disability benefits, they may find themselves stranded, homeless and incapable of dealing with the bureaucracy before them.

Even the autistic citizenry who entered the statistical world of autism demographics in the 1990’s and even to 2010, the resources available to them for full adulthood remain limited, and almost non-existent for their mature years. Presently, that population first measured in the mid-1960’s are about to become elderly. Without sufficient resources, we expect many will have grave difficulty coping with society and the deinstitutionalizing of their lives.

Building A Better World

Autism Citizen exists to build a better world for those who live with the condition. We are developing courses, training and eLearning resources to help all the people that are important to the lives of the autistic in mainstream society; yes, that’s like the old children’s song, ‘the butcher, the baker, the candlestick maker’. Everyone needs to know about autism, but more important, how to respect, and to cherish our autistic friends, neighbors and colleagues.