A challenge to US National Autism Organizations

Prominent national autism organizations have pussyfooted around this topic way too long. Their focus on the large majority of lower functioning autistic children and adult children has kept their eyes glued comfortably on the ground. Majority statistics surrounding classic Kanner's Autism have kept these organizations focused away from at least one reason why many of their local and state chapters continue to remain generally unwelcoming to parents and individuals with Asperger Syndrome. The reason may be as simple as this article's modification of comic character Pogo's utterance:

"We have met the enemy, and it is us."

There is uncomfortable but undeniable truth in the assertion that children who in infancy and early childhood appear to start out as profoundly impaired as their classic Kanners majority cousins somehow manage, by the time they attain school age, to move from classic autism to Asperger Syndrome. No one has come up with an explanation "why" and for the purpose of discussion in this section, it doesn't matter.

Why many parents of classically autistic children have such a problem in turning the ASD spectrum searchlight on themselves is not for us to guess, but after ten years of formal knowledge of AS, it is safe to suggest that (1) in many cases, there is a connection; and (2) massive denial of all kinds and at all political levels continues, despite what we know, not because of what we know about autistic spectrum disorders.

This phenomenon may be the biggest elephant in the room, yet few in the "autism establishment" dare touch it.

We do.

Doing so may explain some of the squeamishness and discomfort of parents and family members of profoundly affected autistic children. Intense national organizational focus has remained on finding cures and developing effective early childhood intervention methodologies. At a national level, policy and member chapter discussion centering on the reality of autistic spectrum parents raising autistic children has met with thundering silence.

Despite an increase in presentations on Asperger Syndrome and participation of AS children and adults in national convention presentations, most major autistic organizations of the US, through inaction of their member chapters remain quite inhospitable to membership of Asperger Syndrome parents.

Discussion about autism in the family has long been underway within the Asperger Syndrome community. It is now time to bring the discussion into the broader forum precisely because autism is a spectrum disorder.

Ten years ago, this section would have been likely titled "AS and the Family". Until the last decade, even had Asperger Syndrome been officially identified earlier, it would have been possible to discuss Asperger Syndrome as a condition that occurs rarely without considering either its origins or studying its impact within families, or whether autistic families and their members function and behave differently than their non-autistic counterparts.

This is no longer the case. Interest in the human genome gave rise to the last decade of the 20th century as a period featuring two parallel tracks of intensive scientific scrutiny. One track prompted medical and psychological experts to look carefully into the family histories of thousands of individuals just being diagnosed with Autism. The second track, one featuring equally intense imaging and brain chemistry studies of how the human brain works, uncovered differences between individuals and differences between the sexes unimaginable before the dawn of new technology. For the first time, we have been able to observe autism "at work" in the brain.

Numerous family history studies all point to a greater than fifty percent chance of AS within an individual's primary relatives. Equally surprising are findings that diminishing but high incidence figures indicate that AS or AS trait behavior can be tracked, by history, back through numerous previous generations of the same individual through second and third order relatives. Even more surprising have been an increasing number of anecdotal reports that in a number of families, Asperger Syndrome runs through both the biological mother and father's families.

An increasing number of child diagnoses have led to adults in the family being diagnosed with Asperger Syndrome. No responsible child diagnostician should fail to consider whether additional members of the child's family are on the autistic spectrum. Without first considering parents, experienced child specialists may look first for AS in biological and then in blended family siblings. One reason for taking additional side views relates to statistics: a number of individuals "somewhere" on the autistic spectrum marry other persons with Asperger Syndrome, and their marriages "work". They are likely the minority of intact marriages where there is Asperger Syndrome present on a single biological parent's side of the family. In view of the increasing number of thoughtful publications focusing on Asperger Syndrome marriages, conscientious child diagnosticians should consider the possibility of additional close family members having autistic traits or full-blown autism.

Exact figures are hard to come by, but the most challenging disabilities found in children may account for up to ninety percent marriage failure. Autism is among such disabilities. Single parents raise a large percentage of Asperger Syndrome children. It isn't always the case that Asperger children are raised by the higher functioning parent of a dissolved Asperger Syndrome marriage. The single parent -- most likely the mother -- may or may not be on the autistic spectrum herself. Further, there may have been no marriage or living together arrangements of any length. If the prime parent is AS, she is susceptible to increased stress of raising children alone in addition to whatever challenges her own autism and other health complications add to the picture.

This section cannot do justice to the topic of Asperger Syndrome marriages or relationships found in recently published books, but it can raise two issues that hover just beyond the focal point of this growing body of literature.

The first is family violence and spousal abuse. The second is the probability that children on the autistic spectrum raised by an autistic parent or parents may experience the effects of problems in parenting caused by the kinds of cognitive challenges common to adults on the spectrum.

Domestic Violence and Abuse

Just as with regular marriages and relationships, domestic violence of all kinds, and spousal and child abuse are very real phenomena in Asperger Syndrome relationships. Understanding abuse makes it no less tolerable. Just because inexcusable acts are committed by autistic adults does not make them any less despicable, nor does autism soften the effect of its visitation on spouses, an Asperger child or children in the marriage, non-autistic children in the family, close or extended family members, or professionals providing service and support to the family and its members.

Earlier in this article, reference was made as to why some Asperger Syndrome families become "closed families". They become closed for much the same reasons that families experiencing domestic violence and abuse become closed and secretive, inaccessible to community support providers, mysteries to neighbors, but not very well hidden secrets to community justice and public school authorities. Victimizers as well as those victimized withdraw from the community at large out of a zealous need to control the chaos in which they live and which they exact in turn upon their victims -- all of the children in the marriage. In this picture, not holding the victimized adult accountable for the effects of domestic violence on the rest of the family is both unrealistic and unhealthy.

When the family withdraws from involvement in the community, what victimizers and their adult victims unleash are repeated acts of chaotic violence and abuse, each instance standing a chance of being less likely to be reported by its all of its victims as well as those in the community well aware of problems in the closed family but reluctant to report it. It is fashionable and a least expensive policy for first responders to refer for treatment the obvious victims of domestic violence. With human services support resources in our states stretched thin or bankrupt, unless things turn around immediately, the next decade will see more throwaway children and irreparable relationships hobbling on without meaningful, long term help.

Dysfunction in AS Families in the Absence of Outright Violence

All of the illustrations below depict worst-case scenarios.

Worst cases are presented for this reason:

It is important for social and policy planners to have a good understanding of the complexity of problems that can and do arise in AS families so they can design support systems to accommodate the toughest cases. For other easier to understand and more traditional mental health conditions, some of this has been done. Specialized mental health disorders organizations long ago began the work that should now commence within the autistic spectrum community.

Dysfunctional AS family life can dip to such extremes. The purpose of presenting these examples is not to encourage readers to expect this level of dysfunction where one or both parents are on the autistic spectrum. However, these examples are not fictional. As a result of his work as a Social Security claimant representative, the principal author of this article has seen the dysfunction depicted here in numerous families of late-diagnosed adults where there is Asperger Syndrome present in at least one member, and likely undiagnosed AS present in multiple family members.

A Note about "Successful AS Families"

Myriads of books have been published over the past 15 years trumpeting individual family success stories. There is no need to repeat them here. To a very large extent, we do not hear of typical AS families until and unless things start to break down with them.

As a result of benefiting from their own self-determination, disabled parents can be good or better parents than non-disabled parents. Their decision to marry and have children may involve much anticipatory discussion and problem solving in advance of the marriage.

That's the good and hopeful side.

However, whenever there is disability in the family, whether with a child, or with several children, or present in the parent(s), special strains and stresses may be present that are harder to compensate for, even though resources outside of the family often do make a difference, especially to the children. Ultimately, a family could spiral into dysfunction and dissolution unless such external resources remain in place as "fail safe protections".

They rarely do.

Control

Money and finances are often the most insidious means of exerting control by an AS spouse when everything else fails. Asperger Syndrome spouses may be good or bad financial managers but are, in fact, the principal breadwinners in the house. To the outside world, they maintain the veneer of respectability and normalcy. Within their family settings, their behavior changes from one unpredictable extreme to the other, from kindness to unspeakable cruelty.

They may hide their money from their partners, or dole out demeaning amounts, demanding exact accounting for each penny spent. Critical household bills may remain unpaid as the AS spouse indulges himself with expensive special interests or hobbies. Joining him in those activities may be the only way the children share time with him. Even them, he may suffer their attention or interest or easily become upset because their interest is not as intense as his.

AS parents can and do go on the attack against a same-sex child with their same condition, scapegoating the child, demanding performance of the child they once demanded of themselves or out of memories of what their own autistic parent may have done to them "at the same age". Allowance is rarely made for their child's age or recognition of the child's accomplishments. A higher functioning parent may do all she can to shield the child from her partner's attacks, but as long as the partnership lasts, the child holds both of them responsible for what is happening. For the AS child, memories and the effects of such treatment remain life-long, and may remain every bit as influential years later as they are at the time they are first recorded.

Tyrannical, volcanic temper tantrums can erupt at any time, or with frightening predictability. No one is spared as a target or onlooker.

Control can extend to far more than finances. Family members may be conditioned to "walk on eggshells" due to an AS parent's eccentricities or unpredictability. The entire family's schedule and routines can be dominated by one parent's absolute need for routine, order, and having things done "my way". Vacations and family outings may be totally determined by the singular interests of a dominant AS parent. Often the effect is so far-reaching and may have gone on so long that other family members and family friends and acquaintances also accede to the AS spouse's "special needs" in ways that unknowing outside observers find quite unbelievable. (McCabe, 2003)

A financially dependent but higher functioning partner may see no way out of the relationship until the children reach a certain age. She may stay in the relationship "for the sake of the children" without considering the toll such a forced commitment may have upon the children's singular experience of "this kind" of marital dynamic. If the family isn't completely closed, it may be possible for the children to experience alternative family lifestyles with relatives or friends. With one or both parents' approval or acquiescence, some AS children actively seek out proxy families or proxy parents in an effort to experience things missing in their own families.

The AS spouse can be a packrat, with personal and special interest items spilling into common family areas or overtaking the entire house, crowding into the other spouse's identity and everyone's personal space. With an absolute need to control things, the AS partner continually violates boundaries unaware of the ruinous effects of his conduct. Housekeeping chores such as vacuuming or laundry may remain on hold due to sensory hypersensitivities or a demand for complete silence from individuals or activities carried on anywhere near the AS parent. Household maintenance and repairs may remain undone due to the AS partner's clumsiness or scattered ability to stay on task and complete one project before half-starting another.

The AS partner may be totally unable to multi-task, so patient parsing out of tasks or parenting responsibilities one by one, or one step at a time, may be all that can be managed. The AS spouse may have no interest in a disabled child's education or that of the other children. The AS parent may be unable to care for a sick child or even be aware of a well child's basic emotional needs. Important dates such as birthdays, holidays, and other special occasions are "kept" by the higher functioning partner with the AS partner often in complete oblivion about the importance of remembrances or special acknowledgments to family members. If the partners have struck an arrangement regarding "appearances", for a given occasion the AS spouse may put in an appearance or utter rehearsed but obviously forced words. While minimal, such "sharing" evidences some kind of acknowledgment of considerate behavior.

Housekeeping standards of cleanliness and orderliness may be set to unusually high or very low standards. Strangers visiting the household are often surprised at what they find. These may be conditions of almost unbelievable order despite the presence of young children, or equally unbelievable squalor and litter. In marriages where there is a healthy degree of give and take through negotiation between the partners, some middle ground may be struck. On the other hand, standards may be set or left at such extremes that the tension standing between the partners on this one issue is almost palpable.

The AS parent may ignore all or some of the children, obviously favor one child over others or be so unaware of the children's needs as to be an unsafe or neglectful caregiver. Chore division and sharing of responsibilities may be so one-sidedly piled upon the higher functioning partner that the AS spouse acts like and demands as much or more attention than the children. The AS partner may have a number of serious health problems and medical care needs, some of which are more frequently seen in autistic adults than in the non-autistic population.

Tactile defensiveness or other sensory issues of the AS partner may be so extreme that shared adult sleeping arrangements are not possible. Except for procreation, sex may be a non-starter for the AS spouse. On the other hand, sexual demands may be so high as to drive the other partner to distraction, leaving him or her little time for rest or respite.

The marriage and family may retain a name-only character, with the AS partner physically or psychologically absent most of the time. The AS partner may be a workaholic, rarely present, or if present, always tired and charging his batteries for the next day or next project.

Both Parents on Spectrum

In dual AS partnerships, both parents may be workaholics, leaving it to others to take on basic care giving and attending to the emotional and other needs of the children. As an example of extreme neglect and total self-involvement, this true anecdote is offered:

When inquiry was made by one such parent to an AS parent support listservfor after-school care for a single, high-demand AS son, follow-up revealed that the previous summer they abandoned their eight year old child on another continent in a boarding school during the high activity period of their seasonal business. The child returned a washout after four or six weeks from a very posh alternative educational setting. They had the means to pay others to parent their child. They thought that such an arrangement was a sufficient replacement for themselves. It was clear they were looking for someone to be a total proxy parent to their child.

Single Parenthood

Single parenting of a disabled child or disabled children may offer relief from an impossible marriage. It is rarely a first choice. Women with problem children make less than ideal first marriage or re-marriage choices. However a good number of women are able to enter second or later marriages and do well. Prior to recent social acceptance of single parenthood, not having a partner moved many women in to remarriage or a succession of live-in arrangements to preserve appearances. Some proved to be successful partnerships.

Separation from a difficult spouse often frees the custodial parent to attend to her health and the previously underserved needs of her children. However, divorce or separation isn't cheap. Following separation, family finances can be rocky for some time. Previously affordable special help may not be affordable once household bills are paid. While divorce or separation has its generic problems, if a single parent is disabled, stress levels can mount rapidly. If there is more than one child in the family, multi-tasking is a given. Asperger Syndrome adults do not multi-task very well.

One contributing author to this article has encountered several instances of very high levels of risk to Asperger children where an undiagnosed autistic parent has tried and failed to overcome personal health, mental health and other cognitive challenges. The main areas of parenting deficiency seem to be with planning, time management, wise setting of priorities, and difficulties with multi-tasking. In two instances, the children were late diagnosed, way into their advanced adolescence. In one instance, all four adult children were in their forties before the first diagnosis of AS was made for one dependent adult following the death of the mother, who was an undiagnosed but "flaming Aspie". Other family member diagnoses followed.

Diagnosis at a late age presents its own problems for the child. Being undiagnosed as an adult, and being hit with a life-changing diagnosis for one or more of one's nearly-adult children can be profoundly unsettling to a single parent.

Without being fully aware of the consequences of her behavior or attitudes, an undiagnosed parent can pose several risks to her children. For one thing, she may have no parenting skills and knows that she doesn't even like children. Still, she heeds the call to motherhood as a social duty. In the case of older women, because of social pressures at the time they attained adulthood they had little choice about remaining childless. Having someone's child also offered the prospect of a meal ticket and some welfare money. In one sixty-year-old mother of four children's case, that's exactly how she handled her life. While they were small, she abandoned all of her children at various times to the care of relatives of the men who fathered them. Her children were all throwaways, yet two of them make efforts to care for her in her old age, efforts she regularly rejects.

A single AS parent may be unable to manage the household finances to the point that month-long food planning is impossible since the food runs out by the third week of the month. Depending on the age of the children, the parent may be able to work a little to supplement the family income, especially if one or more of the children qualify for SSI. However, for each dollar earned and taxed, she loses a dollar in combined SSI benefits for the family.

With divorce or separation may come the loss of an automobile or other independent, non-public means of transportation essential for shopping, transportation to school and appointments. Medical care of the children may suffer as a consequence of loss of insurance or failure to take advantage of free or low-cost care. Time delays take on a new meaning with the loss of a car. Loss of a family home invariably means high cost for rent under far less desirable living conditions. With losses experienced through separation or divorce, long-range planning may become impossible under the pressure of making do from day to day.

Dire economic straits can prompt an autistic parent into making foolhardy decisions. A parent may encourage her disabled children to apply for SSI benefits as they become adults, thinking more of immediate added income to the household than the long-term future cost of placing them into a permanent sub-poverty income status that few beneficiaries escape. A stressed-out autistic parent may push a dependent child out of the house before the child is ready for independent living. On the other hand, the parent may not have the skill to prepare her children for independence and stifle their interest in living independently. The parent may rely upon her children as caregivers for herself although they cannot care for their own needs. A financially desperate parent may induce her children into taking any job rather than completing high school, getting a GED, or going on to college. They know their children could do better, but they don't know how to help them. Parents in such need rarely help their children make plans for their own future after the parent is no longer able to care for them. Many such children "fall through the cracks" and become lost souls -- or the next generation's parents.

Even if a parent is AS diagnosed, the way the current social support system operates has been to provide minimal cash assistance to impoverished children but little to no help to their developmentally disabled parent. The social toll and cost for such shortsighted assistance is enormous and growing.

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