AS in the Family
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.
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
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
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
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
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
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.
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
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
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 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
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.
Entire Article: AS
Grows Up -
Recognizing Adults Today with AS
For More Information Contact:
Roger N. Meyer at email@example.com
AS Grows Up;
Recognizing Adults in Today's Challenging World
Traits by Age
AS " in" the Family
Adult Diagnosis and the