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Sol R. Rappaport, PhD., ABPPsrappaport@counselingconnections.net

Richard Wilson, Esqrwilson@rwlex.com

The Other, The Different and The Non-Conforming Child: Challenges to Families with Children with Special NeedsChildren and families coping with deafness, dwarfism, down syndrome, autism, schizophrenia, severe disabilities, prodigies, children conceived in rape, criminals and LGBTQ—particularly—transgender children; Challenges for the child and the parents or parent in

Intact familiesDissolution or lack of marital relationship (eg, parentage)Post-dissolution

Challenges and best practices for the professional consulting with or representing the child or the parent

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2.01 Boundaries of Competence(a) Psychologists provide services, teach, and conduct research with populations and in areas only within the boundaries of their competence, based on their education, training, supervised experience, consultation, study, or professional experience.

AFCC Model Standards 1.1Child custody evaluators shall gain specialized knowledge and training in a wide range of topics specifically related to child custody work. Evaluators shall gain broad knowledge of family dynamics. Evaluators conducting evaluations that raise special issues shall obtain specialized training…

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Section 504 of the Rehabilitation Act of 1974Protects people with disabilities; requires FAPE

Individual with Disabilities Education ActAutism means a developmental disability significantly affecting verbal and nonverbal communication and social interaction, generally evident before age three, that adversely affects a child's educational performance. Other characteristics often associated with autism are engagement in repetitive activities and stereotyped movements, resistance to environmental change or change in daily routines, and unusual responses to sensory experiences. 300.8LRERTI

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Center for Disease Control (2009) rates of ASD1 in 88 children in US diagnosed with ASD

In 2000, it was 1 in 150

Increased 57% in four years

By age 8:1 in 70 boys

1 in 315 girls

Center for Disease Control (2013)2.6% prevalence in South Korea

About 1% in people in Asia and Europe

Autism (ASD) is a category of developmental disorders

characterized by deficits in communication and social development, as well as restricted and repetitive patterns of behaviors and interests (American Psychiatric Association, 1994).

Autism is diagnosed when a child fails to develop normally with respect to social and communication development, in combination with restricted development of imagination, and repetitive behaviors.

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Characteristics Continued

In autism, there is often, but not always, associated cognitive impairments (i.e. mental retardation, below average IQ)

communication deficits, such as responding inappropriately in conversations, misreading nonverbal interactions, or having difficulty building friendships appropriate to their age

overly dependent on routines, highly sensitive to changes in their environment, or intensely focused on inappropriate items

gender differences in diagnosis, there is a 4:1 male: female sex ratio in classic autism (CDC)

• Similar to classic autism except for language delay• Difficulties with pragmatic language

• Cognitive abilities fall into the normal range

• Social, communication and repetitive difficulties are found in both disorders

• No longer a diagnostic category with the publication of DSM-5

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DSM-IV-TR versus DSM-5

Historically, in DSM-IV-TR, there were five disorders that fell within that spectrum including Autistic Disorder and Asperger’s Disorder (APA, 2000)

DSM-5 made changes to the definition and diagnosis of autism and Asperger Syndrome.

All now fall under one diagnosis: Autism Spectrum DisorderThree levels of severity

Social communication and social interaction deficits

Restricted, repetitive patterns of behavior, interests or activities

Sensory integration issues – hypersensitive to sound, light, textures including clothing

Inflexible adherence to rules or routines

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65% - most common were ADHD in children and Depression in adolescents

Higher rates of:Depression

Bipolar Disorder

Anxiety Disorders

OCD

ADHD

See Mazzone et al, 2012 for an excellent review

Broad phenotype in these families that includes social functioning, OCD symptoms, and early language and reading issues (August, Stewart & Tsai, 1981; Baren-Cohen & Hammer, 1997; Botlon et al, 1994; Gillberg, 1989)

Research found that there is a higher rate of autism among the parents of children diagnosed with autism (Delong and DeWitt, 1988)

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The level of stress involved in raising children with autism is high (Bishop, Richler, Cain and Lord, 2007).

Many parents of children with ASD experience substantial emotional demands associated with caring for their children (Plant and Sanders, 2007; Weiss, Sullivan and Diamond, 2003).

Parents of children with ASD have reported higher levels of stress than parents of children with other developmental disabilities, including but not limited to Downs’ Syndrome, cystic fibrosis and fragile X syndrome (Bishop, Richler, Cain and Lord, 2007).

Social Support, Stress and ASD

Parental stress has been extensively studied with respect to social support (Bromley et.al, 2004; Hassal et al., 2005)

Lower levels of social support have been found to be consistently associated with higher levels of stress in the parents of children with ASD and other disabilities (Bromley et.al, 2004; Hassal et al., 2005)

Low levels of social support is the most common predictor of depression and anxiety in mothers of children with ASD (Boyd, 2002; Wannamaker & Glenwick, 1998)

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Parents of children with disabilities are more likely to experience fatigue, depression, lower self-esteem and dissatisfaction with themselves and others (Bristol, 1984; Lyon and Preis, 1983)

Some research also reports that families with children with disabilities report considerable discord (Holyrod, 1979; Weiss, 2002)

A family of a child with autism may have more stress than a family of a child with mental retardation, cystic fibrosis or Downs Syndrome (Donovan, 1988; Weiss,2002)

Social anxiety has been found to be extremely high for parents of children with ASD (Kousikko-Gaufflin et el., 2012).

Social anxiety is commonly comorbid with other Axis I disorders like Mood Disorders, other Anxiety Disorders and Autism Spectrum Disorders (Hoffman et al., 2010; Kousikko-Gaufflin et el., 2012).

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Siblings of children with ASD have higher levels of problem behaviors compared to siblings of typically developing peers. (Abbeduto, Krauss, Greenberg, and Swe,2004).

These siblings also have a higher rate of ASD or ASD-related symptoms than the typical sibling (e.g., language impairments) (Tomblin, Hafeman& O’Brien, 2003).

The most effective treatment is a comprehensive treatment that addresses all of the components/factors of ASD. This is usually a combination of drug therapy, speech therapy for the pragmatics of language, occupational therapy to refine the fine and gross motor difficulties, social skills training, and behavior management to treat the perseverations that impact the functioning of the person with ASD (Atwood, 2007; Rosenblatt & Carbone, 2013)

You are treating the symptoms, not the disorder – the disorder can’t be treated away.

Much of the drug treatment for ASD, especially with children, is “off label” use, meaning that the Food and Drug Administration has not approved a specific medication for what it is being used to treat (Chez, 2008).

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Individual Psychotherapy - may focus on helping a child adjust to their difficulties and learn new skills, including coping skills, frustration management skills, and others

Social Skills Training – usually smaller groups (2-6) focusing on development and acquisition of social interaction skills

Applied Behavioral Analysis – this is strictly a behavioral approach (Atwood, 2007;Chez, 2008; Frith,1991; Rosenblatt & Carbone, 2013).

Occupational Therapy – often to help manage deregulation

Physical Therapy – for children with muscle tone issues

Speech Therapy – usually focusing on pragmatics

Nutritional Therapy – GFC diet and allergies

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These treatments are to help alleviate many of the biological symptoms experienced with ASD (Shaw, 2002).

Common treatments include: Gluten-Casein free diet, Defeat Autism Now (DAN) diets, use of anti-inflammatory medications to reduce pain and swelling in the GI tract and the treatment of mercury in the blood (Shaw, 2002).

These treatments are used less often than traditional medications and therapies but some people do report significant symptom relief and reversal of ASD symptoms with their use. However, there is only limited research support for these

Children/adolescents with ASD may be remarkable at remembering facts (savant)

Children/adolescents with ASD may have difficulty recalling the gist of an event

Recounting experienced events may be problematic because of problems with social relationships and understanding of the self

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Understand you may need to do more direct questioning and prompting for details as compared to non ASD children.

Understand that their not reporting an event that a parent states they witnessed does not mean the parent is lying – they may have witnessed it but not paid attention to it

Consider if they have features of ASD as well

Coping strategies/experienceHypervigilance

Obsessive

Pushy

Rigidity – assess whether related to current situation or more pervasive feature

Stressed

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Knowledge of Asperger’s – how obtained?

Acceptance of the diagnosis

Knowledge of/participation with the schoolServices provided

Bussing issues

Peer issues

Sensory defensiveness

What happens when the child turns 18?

Each parent’s role in early intervention

Not all kids look the same or have the same needsImpulsive/Hyperactive vs Inattentive vscombined

Consistency of parents – can they do homework with the child the same wayConsistency of routine, structure, and organizationBehavior management – can the parents agree on goals and strategiesCoordination with the schoolsParent’s willingness to obtain helpSupportive of effective treatmentsUp to 2/3rds may have comorbid diagnoses (46% with LD)

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Parent’s awareness/understanding of the disability and its impact beyond school

Parental involvement with School

School advocacy

Parent’s flexibility in learning ways to help their child

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Help with homework – need for consistency, routine, and rewards

For children with a learning disability, it can feel like you are a minor league baseball player in the majors getting eaten alive

Help with non-homework LD issuesUse of charts, graphs, empathy

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Importance of medication consultation

Which parent is more supportive of treatment?

Which parent is more patient and understanding of the disorder?

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What are the specific OCD symptoms and how does it impact their time with a parent?

Consider parents ability to have consistent routines

Patience at transitionsThey may take a while

Do the parents understand it’s not a parent trying to delay getting the child to the other parent’s home?

Have parents drop off rather than pick up.

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Schizophrenia

Bipolar Disorder

General QuestionsHow and when did they disclose

With whom is child more comfortable?

Suicide risk

Parent’s acceptance of their child

Parent’s knowledge of the issuesE.g., vocabulary, including pronouns

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Foundation: What: Identifying the Issue/Problem/Question

Who: Parent or ChildParent

Child

When: Status of parental relationship at time of disclosure

Intact marriage/family/parentage

Pending Dissolution

Post-Dissolution

Foundation: Does child (or parent) have access to

Mental and Physical Health Professionals

Legal Counsel

Others

Is child involved in Different or conflicting positions between parents

family break-up or other event that may involve need for consent from one, each or both parents

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ConsiderationsChild’s awareness/understanding/expressed intentions

Clash between pressure to conform/not be different and difference of inner voice

Strong prevailing institutional binary Male/Female, particularly in school setting

Sharp, clear and focused institutional distinctions between genderssocialized gender stereotypesPhysical and social separation along gender lines in school

By choice of friendsBy school

• Gym classes, athletic programs

• Courses by gender (home economics and Shop)

• Extra curricular activites

• Sports

• Other

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ConsiderationsParents of Transgender or Gender Non-Conforming Child

Child typically cannot legally consent to psychological or physical treatment, legal procedures (eg, change of name, documents)Is parental consent an issue

Do parents agreeDo parents have to agree (eg, consent to certain procedures)Options for child (and parents) if no agreement

Legal definition of change of gender varies from state to state

Typically required physical alteration of cisgender physical attributes (commonly known as “gender reassignment surgery”)Trend has clearly been away from physical “reassignment” and toward what is commonly referred to as “transgender congruence” which may or may not include physical alteration

ConsiderationsPuberty, Physical Transformation and Treatment

Issues of Timing: Physical Change relative to Child’s Awareness, Expressed Preferences, Parents and Consent

Puberty and physical changes

Profound and Significant

Alters outward and visible appearance

Irrevocable and cannot later be changed without surgery

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Treatment

Puberty Blockers (aka Puberty Inhibitors): Leuprorelin/Lupron and Histerlin

Available since 2007

Revocable, or at least not permanent

Arrest onset of puberty

Allow child and/or parents time

Requires

Access to treatment, counseling

Consent

TreatmentHormone-Replacement (aka Cross-Sex Hormone)Therapy

WhatM to F: estrogens and anti-androgensF to M: androgens/testosterone

IssuesTherapy is IrrevocableStandards of Care Vary Widely, include

• Typically guidelines require child to be 16 or older

• Standards of Care for the Health of Transsexual, Transgender, and Gender Nonconforming People by the World Professional Association for Transgender Health (WPATH) (7th Ed. 2011)

• DSM-V, ICD-10-PCS

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Other considerations: Change of Documents (to start job, open accounts, travel, apply for school, etc)

Order is/can be critical

Driver’s License/State ID

Passport

Birth Certificate

Other Documents

For Travel (TSA, particularly)

For Other reasons

School testing/Pre-college examinations

Other

Are transitions easier from school?Is the school willing to help?

Consider longer times with each parent to decrease transitions

For some children, it may be the opposite. Thus, need a thorough assessment and parental flexibility

Have parents drop off rather than pick up.

What about calling the child, texting, e-mailing, skyping, etc.

Who else can help? Siblings, grandparents?

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Child’s emotional level

Child’s social level

Child’s functional capacity

Handling of Transitions

Need for consistency

Sibling issues – sibs may need a break

Parent’s need for time away

Financial issues – child support may need to be adjusted due to special circumstances

See whose health insurance plan is better

Designate what is considered health care in relation to parent’s obligations

Consider cost of advocates/special ed. attorneys

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Know the school system

Know the special services districts can provide

Review IEP’s

Learn about RTI and how a school uses it

Talk to the teachers of proposed schools/classrooms

Talk to the school therapist – is there applied behavioral analysis if needed; social stories

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Start with open ended questions Be clearDo not use compound questionsDon’t use metaphorsBe concrete

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For young children and children with any type of developmental/cognitive disability, or Autism

What’s up? – the sky

It’s raining cats and dogs

How do you sleep at night

John has painted furniture

Children often know what to expect

What happened when your father came home from work? Nothing

Tell me what happened when your father came home from work?

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Interview them in their home

Avoid having them tell you a story

Take culture into account – children living in poverty are exposed to less language and thus may speak less and understand less. Don’t assume silence means something negative.

Cultural values

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Keep words simple

Keep questions short – no compound questions, just like in court

Question your assumptions of what a child means by what they say; ask what words mean – yours and theirs

A Final Tip