Commentary for ASpar
Asperger's Syndrome as a Parenting-Disability
©Sheila Jennings Linehan, B.A., LL.B.,J.D
Family Lawyer & Family Mediator

Parent's With Asperger's Syndrome:

Parents with Asperger's Syndrome exhibit either minor and or significant problems[1] in their parenting. Problems experienced by parents who meet most or all of the diagnostic criteria for Asperger's Syndrome are significant and yet little understood in the child welfare community. This is in part because the able autistic parent community is invisibly disabled.

Problems in parenting are linked directly to the core neuro-cognitive clinical features of Asperger's Syndrome itself, namely weak central coherence, poor cognitive shifting & lack of a theory of mind.

In this way, the problems experienced by these parents may be described as being organic in origin. Elsewhere these problems have been described as occasionally presenting as either organic neglect or organic abuse.[2]

Some of these parents exhibit what I refer to herein as a parenting-disability.[3]  That is, they suffer from significant neurological deficits that show up as deficits in their parenting tool kit. These deficits in turn impact on their global parenting capacity.

The question of degree of affectedness vis-a-vis capacity to parent is spectrum dependant. Always in addressing parenting problems with this population parent capacity assessors and custody and access assessors need to ask themselves the primary question:

Where is this parents placement along the spectrum? 

The presence of neurocognitive features of AS may not be as problematic in other spheres of the parents life[4] but AS cognitive phenomenon impact significantly on parenting capacity in a unique and highly specific manner. The fact that a parent may be relatively high functioning in the work place is not an indicator that parenting is not affected in the manner described herein.

There are many aspects that accrue to the optimal parenting of children that includes nurturing, care taking, relating, understanding, teaching, short and long term planning and the provision of support to the child (emotional, relational and financial) as well as guidance. Parenting then necessarily involves an intense interplay between parent and child cognition and between parent and child emotional reciprocity.

 
Many parents with Asperger's Syndrome are eager to parent in their children's best interests and clearly work hard to understand their children. However, they suffer from the affecting neurological problems noted herein.

This fact is illustrated by reports of parents[5] with Asperger's Syndrome themselves.  In her autobiographical text Dr. Holliday Willey states:

"we cannot help but tell people what we think the moment we think it&I never for instance leave my children to wonder what I am thinking& I routinely vocalize my thought processes, often to their dismay ....things are often skewed in our family, turned so that Mom ends up relying on the children for their judgment and guidance...&. I look to then as confidants and best friends...&I ask them to help me find my way out of malls & to hold my hand when my anxiety mounts, to tell me if I am saying things that no one wants to hear. (Holliday Willey 1999).[6]

Unfortunately, due to the very nature of the disorder, this population rarely avails itself of parent education seminars or workshops where there is evident need for use of such resources. The result is that even very young children are routinely parentified by these parents.

This is because as a group, autistic parents lack insight into their own autistic condition and into the impact of it in their role as parent. Those few affected parents who do see that their parenting needs to be shored up often fail to see the overall impact of their parenting problems on their children as being significant.

If they did, being the committed parents they so often are, they might be more willing to seek out autism-appropriate parent supports & resources.

The need for use of such services is even more essential when one acknowledges that many parents with Asperger's Syndrome have children with similar profiles to their own (special needs children on the autistic spectrum) and who are an enormous challenge to parent. This is true even for those parents who do not share similar spectrum-sitting profiles to AS parents.

A description of one problematic parent profile may be seen in The Ontario Association of Children's Aid Society Journal 2003 referenced below.

There are many neurological aspects of Asperger's Syndrome that impact on the ability to parent. There are three that I present here as being The Big Three. They are as follows:

1. Poor Cognitive Shifting:

Studies in the area of cognition have noted that those on the autistic spectrum have problems with updating the scope and focus of their attention. (Berger et al 2003). It has been suggested that this particular attentional difference may stem from an innate inability to reorient attention rapidly (also Berger et al., 2003).  The latter is itself an attentional deficit of significance when the parent has care and control of young children.

 Parents need to be able to reorient their attention frequently and often need to be able to do so under pressure.

Not to be able to do so is a parenting-disability.

It has also been noted in the research that many individuals on the spectrum share a deficit in the shifting and sifting of attention between sensory schema as well (see reference 2 below).

This significant feature also plays out in parenting. These deficits tie in with other neurological differences of Asperger's Syndrome such as sensory hypersensitivity and hyposensitivity.  Together they impact directly on the core tasks of parenting.

For example: The appearance of a sudden very strong odor may prevent the parent from noticing what the child is (also suddenly) doing.

Further on the matter of sensory issues, these parents frequently attest that they find it difficult to tolerate the normal noise, mess and chaos of childhood and especially the high pressure needs of special needs children for any length of time.

Parents on the spectrum cope with what are essentially neurological insults by any of a number of means: by leaving the situation, by shutting down, melting down or through withdrawing from the toxic stimuli. This fact leaves children to fend for themselves.[7]

This problem needs to be addressed by child psychologists so that this may be addressed in custody access assessments, by child welfare social workers and importantly, by these parents themselves so that children in these families can be better cared for when Asperger Syndrome parent thresholds have been exceeded.

Related to problems of attention deficit are features of impairment in the employment of visual attention, and, problems in attending to both auditory and visual information as well as apparent problems in attending to many visual items simultaneously.[8]  Where the latter is a cognitive feature one might ask how twins for example, could be managed.

Parents with Asperger's Syndrome with three or four children may admit to struggling with information and sensory input at play grounds and fair grounds and parks for example. In this way they are no different from children with Asperger's Syndrome (on whom most of the research has been conducted to date, and about whom we remain most comfortable discussing in almost every forum).

During parenting time, spectrum-sitting parents may claim they are over stimulated & overwhelmed neurologically[9] or they may blame others around them for their distress. The former is seen in the Holliday Willey book where the authors own sensory issues and other clinical features of her Asperger's Syndrome present as central to her parenting.

A question that needs to be asked by involved child experts about an individual parent is:

When this parent is neurologically over whelmed, how well does he or she function with this child?

2. Theory of Mind:

The second of The Big Three neurological features that these parents lack is a theory of mind (ToM). ToM is one ability we have to make sense of the world we live in (it is not the only one).

This theory purports that an individual's thoughts, knowledge, beliefs and desires make up his or her own unique theory of mind.

Lack of ToM, or mind blindness is a term of art coined by neurocognitive theorist Simon Baron Cohen. Baron Cohen proposes that a core feature of autism is the inability to know (deduce) what others know and what others do not know.

Those who are mind blind, he suggests, are unable to ascribe mental states to others as communication is taking place (or thereafter I presume). Assumedly this is not an either/or condition, with some individuals being more and others being less mind blind than non-autistic individuals.

The Mind Blind Parent:

Mind blind parents with Asperger's Syndrome frequently cannot correctly discern the thoughts, wishes, knowledge or intentions of their own child. What is more remarkable than this reality however, is the fact that this reality is not yet seen in the custody and access or child welfare case law.

No one has looked closely at what it means to be parented someone who lacks theory of mind. However, those who were parented by autistic parents are intimately familiar with the experience. This is a matter of concern especially as regards children who are in the sole care of such a parent as at access (during marital separation), or death of the non-autistic parent, or abandonment by the non-autistic parent.

In the ToM paradigm, it is believed that non-autistic people mind read effortlessly during communication and that mind reading, in the sense that autism theorist Baron Cohen and his colleagues mean  is an integral part of communication and of our innate capacity to relate to, for example, our children.

It is evident then that mind blindness or lack of a ToM cannot but play a central role in global parenting capacity.

To look at this issue more closely we need to ask the question:

What is it to be an infant and to be parented by a woman who lacks both central coherence and ToM?

I submit that with the pre-verbal child, ToM is the sina qua non of parenting capacity. It is the core parenting feature relied upon by an adult to effectively parent an infant.

Mothers (and fathers) must and do inherently know the wishes and needs of their infants, for how else can they meet their needs?

For those who posit that this discussion is somehow anti-disability, I note herein that the needs of infants can be well discerned by fully blind parents, provided they have intact ToM.  Physically blind non-autistic parents are capable of ostensive-inferential communication and so on. Moreover, as a group, they gladly accept parenting aids when offered.

Clearly parents per se rely greatly on the presence of their own theory of mind in order to parent. Clearly those parents who lack one, also lack a core parenting skill.

Taking ToM into consideration, one can see that parents with full blown Asperger's Syndrome would have enormous problems conceptualizing and understanding the nature of and the context of the thoughts and feelings of those they are parenting.
Having regard to ToM one may pose the question:

Do children have a need to be (read) understood at a fundamental level by their parents? 

I submit they do, and to the degree that a parent lacks this ability and where that parent is the primary attachment figure there will be, as yet unnamed, attachment problems for the child. 

The most recent child psychology research clearly shows that the major factor leading to a secure attachment is the caregiver's sensitivity and responsively to their child's needs and signals. (quote from the paper on Attachment and Child Protection by Dr. Tim Smith, PhD., C. Psych, in Enhancing Your Ability To Represent Your Client. Understanding the Clinical Aspects of the Child Protection Case as published by the Law Society of Upper Canada in 2004 at the Continuing Legal Education Program Conduct of the Child Protection File in February and March 2004).

Parents who lack a theory of mind may claim they have only a little mind blindness. In my view this is like being a little bit pregnant. Being able to only figure out first order intentions but not the second order meta intentions is still going to result in severe parent-child miscommunication. Children are intuitive and perceptive and will know that there are perceptual gaps at play in their relationships with their AS parents. This issue has been addressed in part by the Failure of Relevance Theory (see Happes work). A great deal more research is still needed, especially around parenting, and more so of parenting young children.

How do children address it?

Again, no one has studied the impact of AS on parent child development, but anecdotal evidence suggests these children need counseling around some of the Asperger's Syndrome behaviors they grow up with.

If we look at an example of one pattern of parental AS behavior one can see how this impacts: Mind blind parents have difficulty distinguishing whether their child's actions are intentional or accidental. This is huge for a child over the course of years. Non-autistic parents face this dilemma at times, but not in the manner or degree of the Asperger Syndrome parent. This one small piece adds enormous dysfunction to these families.

Determining intentionality per se requires ToM. (Francesca Happe offers a sophisticated discussion of this issue in the Frith text). Lack of a ToM in the example above leads to very evident problems around child discipline, criticism, resentment, blame, and correcting behavior (punishment) with obvious related issues for child mental health.

Discussions with children of AS parents almost uniformly reveal child concerns with being scape goated, with the wrongful attribution of guilt or innocence amongst children in times of familial dispute. 

Some parents with AS suffer from poor or extremely poor impulse control and from autistic rage and may react strongly to a miss-perceived child behavior.  Clearly this is an issue that needs further exploration by child psychologists and social workers.

Face blindness or Agnosia a neurological inability to recognize and read faces. Individuals with a variety of neurological conditions suffer from Agnosia, including parents with Asperger's Syndrome.

Agnosia is a problem that adds to the overall problem of reading ones children for these parents. In this context it may be seen as a subset of mind blindness.  Digby Tantam's work addresses some of the problems that those on the spectrum experience with their inability to read facial expressions.  Face blindness in addition to mind blindness handicaps the parent attempting to reach and relate to their child.  If the child also suffers from face blindness it is easy to see how safety concerns might arise (all inadvertent).

As much as the autistic community argues that autism is a difference as opposed to a disorder, one cannot help but wonder how the child of a mother with Asperger's Syndrome is being helped by this difference in terms of all that we have learned about evolution from Charles Darwin & all that we have learned about the psyche from Dr. Sigmund Freud. Surely it is problematic for a child when its primary attachment figure cannot discern the nature of its emotional state either through mind reading or looking at its facial expression.

I suggest that misreading one's child's facial expressions could prove very dangerous for that child. (Is he drowning or playing? Is she choking or coughing?).

I submit that mind blindness in a mother is the very opposite of what we know to be mothers instinct (Elizabeth Tinburgen, married to Nobel Prize winner Niko Tinburgen has interestingly done important work in both the areas of Mother's Instinct and autism), namely the uncanny ability that many mothers have to know and sense the state of their child's condition (whatever it may be) even if the child is in denial, unaware or pre-verbal. Parents rely on reading their child's face to understand and respond to signs in the child of alarm, distress, fatigue, nausea and signs of sadness, loneliness, joy, and fear.

If we take the example of childhood illnesses, long before clinical signs show up, non-autistic mothers can tell that something is amiss with their child. Pediatric literature now advises pediatricians to listen to the parents of their patients sixth sense or intuition. (I suggest what is taking place is heightened mind reading in the sense that Baron Cohen means is.  Pediatrically Mothers instinct then is a noted added & valuable clinical sign.[1] It is a parenting feature that supports child well being. Its absence I argue has the opposite effect. This is an important child welfare issue additionally because autistic offspring have high pain thresholds and have been known not to self report even very serious illness and so signs and signals MUST be seen by the parents of these children. On this, pediatricians may need to become aware that the parent who brings the child to see him or her may not in fact be fully able to correctly describe that child's condition or illness or its severity.

When it comes to children, parents are normally very highly tuned & read very well to signals of all kinds that there children give to them. Unless of course they are signal blind, mind blind, or face blind.

Asperger Parents are, to borrow Daniel Goleman's term, mis-atuned (dyssemic). There is a nice little discussion of this issue in his book Emotional Intelligence Why it May Matter More than I.Q.  This is not a judgment, it just is. Once we better understand the how's and whys of this the better we will be able to intervene to help parent and child out.

Children need a parent who can read them.  This speaks to issues of security and safety. It also speaks to how children learn what intimacy means in their family of origin. Lessons about security, attachment and intimacy are key cornerstone emotional sign posts of childhood.

3. Weak Central Coherence:

Central coherence is the ability we have to focus on both details as well as wholes of a given situation and to follow though on plans in a variety of areas. It is also the ability we have to focus on what takes priority and what is important.

Many parents with Asperger's Syndrome hyper focus in on details rather than wholes, and have odd focusing of attention something that has been noted in the literature as 'weak central coherence'.

This has obvious consequences on performance of the short and long term core tasks of parenting.  This feature of AS Parenting is seen in the Holliday Willey book where she describes her own parenting problems that are caused by her weak central coherence.

It also shares child safety consequences. Odd focus of attention can prove lethal (in a car, at the sea side, at the cliffs edge). Non-autistic parents with partners with AS all seem to have anecdotal stories that illustrate the significant safety issues with weak central coherence).

Any one of the above three neurocognitive features alone would impact on parenting capacity. But together they are significant and may place children at risk.

Being able to see the whole picture or the big picture is part of what parents need to be able to do in order to teach a variety of childhood learning tasks over the course of childhood as well as to be a reliable stable presence.

OTHER NEUROLOGICAL ISSUES AFFECTING PARENTING:

(1) When autistic obsessive behavior and or preservations are added to the problems posed above, parents with Asperger's Syndrome will find it overtly difficult to put their child's needs first.

(2) Emotional disorders are a problem. Children are forced to accommodate parental rage, some of which is directed at them and which (see theory of mind above) has nothing at all to do with the child.

(4) Anxiety is another problem. Author and Asperger 's Syndrome parent Liane Holiday Willey's book Pretending to Be Normal Living with Asperger's Syndrome[10] offers a snap shot of a diagnosed mothers problems with the core and other instrumental tasks of parenting. Dr. Holliday Willey's own anxiety is a feature of her Asperger's Syndrome that takes center stage in her compelling book.

(5) Executive function deficits cause problems especially where there is a separation or divorce and the parent with Asperger's finds him or herself in the position of having to exercise these kinds of skills for his or her child alone. Children in these settings are exposed to an endless series of things lost, things forgotten, appointments missed, late pick ups, late drop offs and so on.

In some cases these children are also caught in the middle as the non autistic parent struggles to keep some kind of order to the child's life in the face of disability (which itself masquerades as conflict).[11]

Conclusion:

Recent research has raised awareness of adult Asperger's Syndrome, We now have a more sophisticated understanding of the various neuropsychological and cognitive features of this condition.

This awareness has not yet been addressed in the context of its existence as a parenting-disability, which I have suggested herein it is. Asperger's Syndrome, whether in a child or a parent or both, is an important child welfare issue. While the issue seems to make us very uncomfortable, we owe it to children to take it seriously.

Parents with Asperger's Syndrome require a great deal of support with their parenting. To date there is no autism-specific parenting capacity test that can be used to look at these parents in order to find ways to better support them in their role as parent.

ASpar encourages more research into this compelling field especially as it speaks to the issue of parents with Asperger's Syndrome.

Aspar is a website that advocates for the children (adult and minor) of autistic parents and notes that when it comes to rights, children's rights must come first.
 
Footnotes:

[1] Nicole Hackett and Lynn Henderson Asperger's Syndrome in Child Contact Cases Fam Law, Feb. 2002, Dr. Venetia Young  Encounters With Asperger's Syndrome in the Solicitors Office in Fam Law September 2001, Jennings Linehan and Schloss Parents with Neurological Disorder Are their Children At-Risk? Sept 2003 OACAS Journal, Jennings Linehan and Schloss Who's Minding the Children? Child Contact and The Parent with Neurological Disorder, International Family Law 2003, District Judge John Mitchell The Unusual Parent and Child Contact Fam Law 2003.

[2] The Parent with Neurological Disorder. Are Their Children At-Risk? Ontario Association of Children's Aid Societies Journal September 2003

[3] I call it this for several reasons. Importantly, it is not a disability that simply affects parenting. The broader implications of these three neuro-cognitive features on parenting is beyond the scope of this commentary but are more fully explored on the ASpar website.

[4] There are parents on the spectrum practicing medicine, conducting symphonies, practicing law and working as actuaries. These are the very same parents whose children are especially invisible as needing parenting interventions and supports.

[5] The question of whether or not AS parents are aware of their own problems or not is contentious. I have written examples from mothers with AS noting where they need their parenting to be shored up, and in one case desperately asking for help, but I have seen none from fathers.

[6] Dr. Holliday Willey hold a doctorate in education and describes what she herself refers to as her parenting problems in a chapter of her autobiographical book Pretending to Be Normal Living with Asperger's Syndrome.

[7] Custody & Access Assessor and Child Welfare Mediator Jan Schloss, (my co-author on this issue in 2 journals) has noted that the children of AS parents face the issue of FENDING on their own as part of their global childhood experience. Jan Schloss MSW came up with this term as it applies to children in these settings. Having to Fend in this way has been described by she and I as being  Organic Neglect elsewhere. There is no intention to neglect.

[8] Functional Anatomy of Impaired Selective Attention and Compensatory Processing in Autism Matthew Belmonte and Deborah Yurgelun-Todd Cognitive Brain Research 17(3) Oct 2003

 [9] No one suggests they should not take their kids to the circus. What is suggested is that interventions be put in to place to support this activity so that it may have a positive outcome. AS parent meltdown at the end of the fair is not a positive outcome for a child or a parent.

[10] Jessica Kingsley 1997

[11] S Jennings Linehan High Conflict and Asperger's Syndrome mediate.com Dec 2003

References:

Adler Robert E. Time Sharing Guidelines from Sharing the Children: How to Resolve Custody Problems and Get on With Your Life 1988 Adler & Adler Publishers

Journal of Clinical and Experimental Neuropsychology
2003, Vol.25, No.4, pp. 502-511

Central Coherence and Cognitive Shifting in Relation to Social Improvement in High-Functioning Young Adults with Autism

Hans J.C. Berger 1, 3 , Francisca H.T.M. Aerts 2 , Karel P.M. van Spaendonck 1 , Alexander R. Cools 1 and Jan-Pieter Teunisse 1, 2

1 University of Nijmegen, Nijmegen, The Netherlands

Bogdashina, O. (2003). Sensory Perceptual Issues in Autism and Asperger Syndrome:

Ball, Sunni M.A., DAPA  Children With Special Needs in Divorce published in Parenting Possibilities Dec 2002 Fourth Judicial District Colorado Springs, Colorado.

Mitchell Baris and Carla Garrity  Children of Divorce: A Developmental Approach to Residence and Visitation 1988 Psytech.

Baron Cohen, S  Mind Blindness An Essay on Autism and Theory of Mind, MIT Press/Bradford Books 1995

Frith, Uta  Autism and Asperger's Syndrome Cambridge University Press 1991

Goleman, Daniel Emotional Intelligence

Hamilton, Lynn. M  Facing Autism: Giving Parents Reasons for Hope and Guidelines for Help Water Brook Press, 2000

Heller, S. Too Loud, Too Bright, Too Fast, Too Tight.  What to do if you are Sensory Defensive in an Overstimulating World. Harper Collins, 2002.

Jennings Linehan, S.  Parenting Mediation in the Family with Disability Resolve Magazine, Family Mediation Canada, Winter 2003 and

Jennings Linehan, S.  Special Needs Practice Issues for Ontario Mediators Solutions, Ontario Association of Family Mediation, Spring 2003

Jennings Linehan, S & Schloss, J.  Who's Minding the Children? Child Contact and the Parent with Neurological Impairment. International Family Law, Nov. 2003 Issue No 4. 

Jennings Linehan, S & Schloss, J The Parent with Neurological Disorder: Are Their Children At-Risk? Ontario Association of Children's Aid Societies Journal, Sept. 2003.

Jennings Linehan. S. High Conflict and Asperger's Syndrome Mediate.Com U.S.A. (in press). Also  published as Disability Masquerading as Conflict in Newsletter of the Colorado Council of Mediators Feb 2004.


© Sheila Jennings Linehan 2004.  Reprinted with permission.

"The fact that some parents of children with HFA and AS themselves have autism-associated features begs the question of parenting skills in such individuals.  It would not be unreasonable to assume that poor empathy in the parent might contribute to some behaviour/psychological problem in the child, quite apart from any genetic influence."  Dr. C. Gillberg: British Journal of Psychiatry (1998) 172, 200-209

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