Who's Minding the Children? Child Contactand the Neurologically Impaired ParentSheila Jennings Linehan, Barrister, Solicitor and Mediator, andJan Schloss, Family Mediator, Child Protection Mediator, Custody Assessor,Parent Coach, Certified Professional Coach, Adjunct Faculty Adler School ofProfessional Coaching

Forty years ago in Canada, child abuse and neglectwere not the known entities that they are today.Professionals and families were largely unaware ofmost child protection issues. With increasedknowledge, there has been ever broaderclassification .of the many kinds of child abuse andneglect that exist. Child welfare, however, is not astatic entity. We have only recently learned, forexample, that inter-spousal violence is very harmfulto children who see it. Also, we have only veryrecently put a child protection policy and guidelinein place in response to this new knowledge. Onething we have learned from this newerclassification of child abuse (witnessing domesticviolence) is that children may be harmedinadvertently by adult problems. Parents withcertain kinds of neurological problemsinadvertently place their children at risk ofemotional and physical harm. The intent to harm isusually absent. We call this organic child neglectand abuse.

The law

A search of our Canadian legal databases has failedto identify a reported custody or a reported childprotection case where neurological illness in aparent has been the determining factor in either acustodyl access or child protection decision. In fact,the databases fail to identify a case namingneurological illness as a factor in any decision.Remarkably, then, in Canada we have no legalprecedent on neuropathology and parentingcapacity either in the custody or child protectioncase-law (unlike in the UK). Nor is there Canadianchild welfare legislation that specifically targets theissue of what happens when a parent suffers from,or submits to, a disabling neurological disorderthat impacts negatively on parenting capacity.There is then, in Canada, a state of legal limbo inthe area of parenting with a neurological disorder. IThe Canadian government is currently involved

in an innovative child-centred justice initiative.'Part of the new focus in family law will be apost-separation and post-divorce model basedon parental responsibilities rather than the oldaccess versus custody paradigm. We submit thatthis paradigm shift will enhance post-divorcechild well-being. It will also force to the tablean examination of the kinds of issues that weraise in this article, namely of parents who haveimpairments that prevent them from carrying out

core tasks of parenting. If a parent cannot carryout his or her responsibilities under a parentingplan, that fact will need to be looked at. In thecurrent schema, parent 'rights' are at the forefrontof any discussion. A different focus will appear incase-law following this paradigm shift; one thatleaves parental entitlements foUowing children'srights rather than the reverse. The CanadianDepartment of justice's news release on Bill C-22stated:

'The "best interests of the child" has been thecore principle of family law in Canada forsome time. In this reform strategy, this coreprinciple is reaffirmed and strengthened byadding a list of best-interest criteria to theDivorce Act. The list will help parents, familyjustice professionals and judges determine thechild's best interests in his or her uniquecircumstances ...The proposed amendments to the Divorce

Act will allow for a greater variety ofparenting arrangements and will carry nopresumption in favour of anyone mode ofparenting arrangement. All arrangementshowever shall be based upon set criteriaregarding the best interests of the child.This new direction in Canadian matrimonial

law shifts the focus in post-separationproceedings away from parental rights towardsthe rights of the child. Best Interests includesthe child's own interests and preferences, theemotional and psychological needs of the childand other factors."

The presentif'Jg problem

The area of parenting capacity and neuropathologyis little researched in the fields of family law andsocial work. Parents with neurological impairmentsand attendant psychopathology who appear beforelawyers, social workers, psychologists, mediatorsor assessors do so as if their pathology wereinvisible. What makes this quite disturbing is thatafter a separation or divorce, many children will beliving with a parent with a neurologicalimpairment. Such a parent ~ither lacks the capacityto:

(1) protect the child from emotional or physicalharm; or

(2) adequately perform the daily tasks of

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parenting to ensure the child's physical andemotional wellbeing.

Some children will undoubtedly wind up in thecare and control of the parent who has theimpairment. Also, undoubtedly, a percentage ofneurological disorders that have a deleterious effecton parenting capacity will go undetected byprofessionals who work with families, be theylawyers of mental health clinicians.

Literature on capacity of parentswith neurological problemsA lengthy literature review on this topic is notpossible because there are only a few publicationson this crucial family law and disability law topic.The following articles address some of the salientpoints documenting how such problems posedifficulties: Thaddeus P. Ulzen and RussellCarpentier, 'The Delusional Parent, Family andMulti-Systemic Issues' (1997) 42(6) CanadianJournal of Psychiatry;' Dr V. Young, 'Encounter'sWith Asperger's Syndrome in the Solicitor's Office'[2001] Fam Law 695; Nicole Hackett and LynHenderson, 'Asperger's Syndrome and ChildContact' [2002] Fam Law 119; and District JudgeJohn Mitchell, 'Contact and the Unusual Parent'[2003] Fam Law 169.The following two issues noted in these four

publications are relevant to this topic:

parents with a neuropathology may exhibitmarginal parenting capacity, andlor may notbe able to parent in the best interestof the child's emotional and physicalwell-being; and

for the most part, children in such familieshave the lonely tasks of self-parenting,whether the family is intact or living apart.

Currently, with lack of recognition of thepresenting problem overall, social agencies andorganisations are ill-equipped to provide the kindof support andlor interventions that these familiesoften require: namely medico-legal services. Infamilies that end in separation or divorce, andwhere there are mental health or neurologicalissues in parents, the interests of children are bestserved by a collaborative approach of professionalinvolvement from a variety of disciplines.

Neurological impairmentsaffecting parentingFor the purposes of this discussion, we separateneurological problems into two categories.'

(1) those with attendant psychopathologyimpacting significantly on parenting capacitythat requires various levels of intervention;and

(2) those that may not as seriously impact oncapacity to parent and thus may only requiresimple accommodations.

Some examples of neurological disorders in thefirst category are:

Asperger's syndrome; high-functioning autism; narcolepsy; pervasive development disorder, not

otherwise specified; right hemisphere syndrome; the dementias, including early-onset

Alzheimer's disease; traumatic brain injury; co-morbid clusters like Tourette syndrome

combined with obsessive compulsive disorderand non-verbal learning disorder;

certain behaviour-affecting brain rumours; and certain kinds of epilepsy.

Some examples of neurological disorders affectingparent capacity in the second category are:

attention deficit hyperactivity disorder; Parkinson's disease; early stroke multiple sclerosis; simple epilepsy; dyslexia; dyscalculia -language disorder/visual spatial

disorder; and dyspraxia.

Parents with disorders in the first category may bevery high functioning but their children are at riskas a result of a variety of parental neurologicalproblems. It is also important to note that parentsin this category may suffer from other (co-morbid)problems as a result of their primary problem.Parents on the autistic spectrum, for example,are frequently depressed, anxious, and manyself-medicate.

Custody disputes

Either before or after custody and access have beendecided upon, some parents will resort to thejudicial system to change child access. For instance,a parent may decide to make an application to thefamily court to restrict, deny or have a supervisedaccess order put into place where the neuro-rypicalparent has concerns about the other parent'sparenting. Often, in cases where there is aneurological problem in one parent, for exampleif one parent has Asperger's syndrome, the otherparent will find themselves in court attemptingto convince a judge that that patent is unableeffectively or reliably to fuIiI the tasks ofday-to-day parenting or to deal appropriatelywith the children in ways that speak directly to theimpairments of this disorder. This is no easy task.

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A significant problem that remains is the fact that,in most jurisdictions, the judiciary has not had theopportunity to learn more about the ways in whichneurological dysfunction aggregates in affectedfamilies. Neither have they had the opportunity tolearn how it impacts on parenting and childwelfare. There are also some concerns aboutmisuse of the diagnosis to discredit suitable parentsby high-conflict divorcing litigants.

Privately ordered separations andthe separation agreement

In cases where there is a neurologically impairedparent with attendant psychopathology, theremay be a negotiated settlement either through thecase-management system or outside the courr." Ahigh percentage of separation agreements made byparents with neurological impairments breakdown.' By and large, the neuro-rypical parentbecomes increasingly concerned over time aboutchild safety and other parenting issues. Most oftenthis will be denied - or just not seen - by thepartner with the neurological impairment. Whatoften ensues is a flurry of motions brought forwardby each party, which may continue for years. It iscostly for the parents, the judicial system and thoseprofessionals working with the family. The courtdance becomes increasingly stressful for allinvolved and outcomes are often unpredictable.While all this chaos is taking-place, the children areleft in a state of psychological and physical Limbothat can go on for years.

The child custody assessment

Parents who exhibit a high degree of conflict whilegoing through separation and divorce becomeentrenched and polarised regarding rime sharingand decision making for their children. Referral fora custody/access assessment may be either courtordered or voluntary. In an effort to resolveseparation conflict, sometimes, parents who areneurologically impaired will be among those whopresent in the offices of the custody assessor. It isincumbent upon assessors to be aware of thepotential impact on parenting when there is aparent or child with neurological impairment.

Child custody assessors can generally see that ayoung child should not be left with a grandparentwho suffers from Alzheimer's disease (a dementia).However, they may not see quite so clearly thatearly-onset Alzheimer's or a different dementia inone or other parent poses almost identical safetyrisks to the child, especially the young child. Someparties who decide to order their separationprivately (mediation, collaborative divorce law,and lawyer-lawyer negotiations) discover, onlypost-agreement, the enormous challenges of tryingto co-parent when one party has a seriousneurological impairment. This parent may not beup to the task of fulfilling his obligations under theparenting plan and the children in these cases willhave suffered the consequences.

Testing for capacity of parentswith neurological impairmentsCurrently there are no specific systematic studiesthat look at the kinds of testing that might beavailable to determine problem areas in parentingfor adults with neurological impairments. What isneeded is the development of a prognostic test toaid in determining the level and type of parentsupport required where a parent has a neurologicalimpairment. For example, if a neurologicallyimpaired parent who has never parented on theirown prior to separation and is requesting timesharing with the children on their own, certainquestions must be asked and answered by involvedprofessionals according to that parent'sneurological profile. The main issue to ascertain iswhat kind of accommodation is required regardingtheir particular disorder and, critically, level ofimpairment with that disorder, so that children canbe appropriately in the care and control of thatparent. The parent with high-functioning autismmay 'forget' about his child's and his ownimpairment, and the consequent danger of, forexample, water to his electively mute epilepticchild.' He may miscalculate the degree of riskposed to this child while in the water. Parents onthe autistic spectrum frequently have difficultygauging degrees of risk, something that is secondnature for most parents.The risks posed to the child then are both

child-dependent and adult neurologicalprofile-dependent. In this local case the childhas epilepsy and is electively mute with mildsigns of pervasive development disorder. Theautistic-spectrum father forgot about her once theywere underwater and swam off. Since we havenoted that neurological problems aggregate infamilies, it is not difficult to see how risk iscumulative for the children in such family settings.

Empirically based assessment tools should beable to address the specific and often paradoxicaldegree of impairment in, say, a father withhigh-functioning autism or Asperger's syndrome.He may be the chair of a university physicsdepartment, but without a sense of time, withoutthe ability to self-organise due to his dsypraxia orto multi-task, can he get a child to daycace ontime? Many such parents' appear more thancompetent in spheres other than parenting. Theirparenting problems continue to elude mostassessors (let alone practising family lawyers) whoare unaware of how neurological disordersmanifest themselves and impact on parentingcapacity. We do a disservice to children when wedo not pick up on these kinds of problems and wesuggest that neurologists, neuro-psychologists andpsychiatrists collaborate with social workers andfamily lawyers so that this child welfare issue maybe better addressed in the future, both in privatelyordered separations and in the family court setting.We note the value in a system such as that

described in the article 'Judicial Case Management

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and the Custody Access Assessment: Melding theApproaches'," where there is case management witha built-in settlement conference process that operateswith a family court clinic. For the situation thatarises from time to time, where the neurologicalproblems of children or parents (or both) are amajor factor in the custody dispute, such acollaborative approach to family separation andrelated disputes would be invaluable. Family courtclinics would ideally have neuro-psychologists,psychiatrists and neurologists on board asconsultants to assist the legal profession and socialwork profession with parenting issues thatinvariably present falsely as litigiousness.

The children's lawyer andchild representation

In cases where there is a more serious neurologicaldisorder with an attendant psychopathology, orwhere there is both a parent and a child with aneurological disorder, there ought to beinvolvement of a children's lawyer to ensure thatthe requirements of the best interests of the childare being met. The challenge in the current systemis that parents' rights are at the forefront of adispute and in most of these cases no one is actingfor the child. Where there are neurologicalproblems in either the parent or in the child, thebest interests of the child must take precedence. Inthis way we are honouring the rights of the child.As with child custody assessors, the Office of the

Children's Lawyer needs to become versed in theparent capacity issues that affect children andparents with more serious neurological disorders. Bythis we are referring to those disorders where mostoften it is the child and the parent who are affectedand we note that neurological problems frequentlyrun in families. When this occurs it is a gargantuanparenting challenge to the neuro-rypical partner,who is faced with insurmountable obstacles withrespect to co-parenting.In the province of Ontario, the Office of the

Children's Lawyer becomes involved in cases wherelawyers ask judges to make the order for the Officeto consider their involvement. Once involved, theOffice of the Children's Lawyer assigns either asocial worker or a lawyer to undertake a completeassessment of the child's situation with regard tothe legal proceedings. We consider this of utmostimportance for the very reasons that Ulzen andCarpentier note in their important article:

'Institutions providing service for such familiesmay have different standards of interventionor mandates (for example public healthnurses and social workers). This results inrole-boundary diffusion and interagencyconflicts that impede progress and can result ina dangerous situation worsening."!

If the Office of the Children's Lawyer could turntheir gaze to families with neurological problems,

they would be taking child welfare a step forwardin an area it has not, as yet, approached in Canada.

NeurologicaJ disorder isnot mental illnessCurrent family law thought appears to categoriseneurological disorders erroneously with mentalillness. Individuals with high-functioning autism,brain injury or Asperger's syndrome certainlyexperience problems that impact on theirparenting, but few can be accurately described ashaving a DSM-JV (Diagnostic and StatisticalManual of Mental Disorders) 'mental illness'.Although Asperger's syndrome is a neurologicaldisorder, it appears in the DSM as a result of thevarying accompanying psychopathologies thatsometimes accompany the disorder. Neurologicalstatus in a parent merits its own parent-capacityclassification and nomenclature. It ought not to bethought of by professionals as a mental illness or apersonality disorder. It is neither. For this reason,interventions for mental illness are inappropriateand ineffective.Ideally, in situations where the parents are being

seen for a child custody assessment, or are workingwith a family mediator, the parenting plan shouldincorporate recommendations from mental healthprofessionals based on the types of empiricallybased testing that we are suggesting here. At thistime, because such testing is lacking, it is,tragically, the children's needs that are overlooked.We submit tbat these children are suffering withorganic neglect and, sometimes, abuse.

ConclusionChildren cared for by parents with neurologicaldisorders may be at risk, especially when thatparent is the sole caregiver with no, or minimal,in-home supports. It is incumbent upon familylawyers and child custody assessors to ensure thatneuro-appropriate parenting assessments areadministered where indicated. For this to happen,psychologists and neurologists need to collaborateto develop a neuro-appropriate test to measureparenting capacity in parents with neurologicalproblems: In families where there are affectingneurological problems, lawyers ought to resort tocourt to ensure child safeguards are put into placewhere this cannot be accomplished privately.Finally, a request for the involvement of the Officeof the Children's Lawyer may be appropriate to'assess and/or advocate on behalf of [he children ofsuch unions when parties separate or ~hen theneuro-typica1 parent dies or abandons a child,leaving that child in the care of a parent withneurological disability. Given the high rates ofdepression and breakdown of marriages associatedwith individuals with neurological disability, thismay not be such a rare situation. Where all of theseoccurrences take place, we must ask the question:how will this parent be keeping the children inmind? 12

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It has been suggested in 'The Parent With NeurologicalDisorder: Are the Children at Risk?' ([2003J Sept OntarioAssociation of Children's Aid Societies Journal) that childwelfare legislation ought to make reference to this issue.

[2003]1 The Family Justice Newsletter, at pp 2-3(Department of Justice, Canada).

Minister ofJustia Annourn:es Child Centered Family JusticeStrategy (Department of Justice, Canada, Press Release),10 December 2002.

Some delusional parents are mentally ill, while others have aneurological disorder.

While acknowledging that tills division is not all thataccurate, it is useful in a preliminary discussion such as thisone.

See S. Jennings Linehan, 'Special Needs Practice Issues forOntario Mediators' [2003] Winter Solutions, at pp 2-4.

In Ontario, there have been cases where ever-increasingrestrictions have been placed in access agreements piecemealby judges over time with each new child-safety incident thatoccurs. Unfortunately the child must face the harm fust andthen the neuro-typical parent succeeds in getting therestriction.

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An example drawn &om a Canadian couple where both theprofessional father and child were neurologically impairedbut where the marriage was intact. In this case, the motherwatched from a boat as the father swam away from hiselectively mute and epileptic child in tropical waters, Themother had given a clear instruction for the father not toleave their daughter's side. Having Asperger's syndrome, thefather, in his eagerness to dive, 'forgot' the mother'sinstruction.

Thaddeus P. U1zen and Russell Carpentier, 'The DelusionalParent, Family and Multi-Systemic Issues' (1997) 42(6)OznadianJouma/ of Psychiatry 617, at p 619.

J. Leverette et ai, 'Judicial Case Management and theCustody and Access Assessment: Melding the Approaches,(1997) 42(6) Canadian Journal of Psychiatry 649.Ulzen and Carpentier, op cit, n 9, at p 619.

W. thank Margot Nelles, director of the Asperger's Societyof Ontario; Karen Rodman of Families of Adults Afflictedwith Asperger'. Syndrome (USA); Ms Carol Grigg ofASPOUSE (Australia); and Judy Singer of ASpar (Australia).We are also grateful to the families in the Ontario areastruggling with numerous parental neurological issues, whohelped US gather important factual information for thisarticle.

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