The Emerging Adult in Autism:Philosophical & Psychiatric

PerspectivesAdrian Mirvish, PhD

Lissa Rechtin, MD, PhD

Adrian Mirvish, PhDDepartment of PhilosophyCSU, Chico

Lissa Rechtin, MD, PhDChild, Adolescent and Adult PsychiatristMedical Director, SF ASD Evaluation CenterKaiser Permanente, SF, CA

Adulthood: the Neglected Stage of Autism

• Majority of research has nothing to say about adult autism

• Funding often neglects treatment in favor of issues such as genetics

• Research on treatment focuses on: ----early intervention (ages 1 to 4 years) ----medical interventions such as

pharmacology, prenatal and other causes

Psychosocial Issues for Adults with Autism

• Outcomes are quite heterogeneous: ----some do achieve relative independence ----most remain at least partially dependent

on others (parents, agencies, clinicians)• Symptoms related to autism play a significant

role in limiting independence and quality of life

Impact of Core ASD Symptoms in Adulthood

• Adults continue to have significant problems with the “autism triad”:

---major limits in ability to communicate ---difficulties with social interactions ---problems with rigid, inflexible behavior

Impact of Core ASD Symptoms on Adult Independence

• Basic skills in regard to the ability to communicate, relate to others, and adjust one’s behavior to others’ demands can be essential to successful independence

• Yet these skills can be affected by core ASD symptoms

• Question neglected by the research: are core symptoms the essential explanation for lack of independence?

Impact of Core ASD Symptoms on Adult Independence (cont.)

• My clinical experience suggests that the core symptoms themselves can be managed via adaptation of standard psychiatric interventions

• This experience appears to echo limited research on impact of ASD core symptoms on employment (eg Rumsey, p. 470)

• Case examples

The Concept of Adulthood

• Independent functioning is central to our concept of adulthood

• Our laws mandate that those with impaired functioning live in the ‘least restrictive’ setting

• There is an extensive literature on the skills needed to live as an independent adult and how to measure these, viz. that on the notion of Adaptive Functioning

Adaptive Functioning

• Self-care (eating, hygiene, dressing, etc.)• Independent living skills (cooking, shopping,

managing money, employment, etc.)• Functional communication (e.g. dealing with

employers, sales people, landlords)• Safety skills (e.g. accessing emergency help,

using public transport, safe use of electricity/ appliances, knowing whom to trust)

Measurement of Adaptive Functioning

• There are well established measurements of Adaptive Functioning, e.g. Vineland, ABAS

• They have been normed, and provide us with standardized scores which can compared with standardized scores from neuropsychiatric testing, such as IQ

Adaptive Functioning (cont.)

• Typically there is a concurrence between cognitive and adaptive functioning, and among various cognitive skills

• In ASD, IQ & adaptive functioning can diverge, e.g. average IQ with adaptive function below 5th percentile

• Also in ASD there can be an unevenness in skills, e.g. poor verbal skills but advanced “splinter skills” such as visual memory, math skills

• Neglected question: how to help those with ASD improve Adaptive Functioning and use any strengths in transition to adulthood?

Instead, public debate has ensued about helping adults with ASD

• Some have begun to warn of a looming crisis: ---with increasing identification of ASD, we

can expect an increase in adults needing help ---school services are not being replaced with

adult social services ---the burden of helping adults with ASD falls

onto their families/society

Public Debate (cont.)

• These concerns have been questioned by some adults with ASD as well as by their family members

----some argue that the differences found in ASD should not summarily dismissed as “symptoms”

----others argue that we should not see the need to help someone with ASD as a “burden”

Such Controversies Invite a Philosophical Inquiry

• How to analyze the role of caregivers and their autistic dependents

• How to assess the value of goals and activities which are divergent from the norm

• Determining the nature of societal responsibility and obligation to others

What is implied when caring for someone is seen as a ‘burden’?

• The relationship is not reciprocal—the one carrying the burden is benefiting the other without being benefited, and indeed may be suffering as a result of providing care.

• There is also an implication that there is an unfairness in having that person shoulder the entire responsibility.

Using Sartre to Address our 2 Core Questions

• Regarding the question of whether there is a lack of reciprocity in caregiving:

----We will use Sartre’s middle period to analyze the concept of the authentic caregiver

• Regarding the question of whether there is a society responsibility to help ASD adults:

----We will use Sartre’s late period to discuss societal responsibility

Sartrean View of an Authentic Caregiver

• One who loves authentically

“unveils the other’s being within the world….to rejoice in it without appropriating it; shelters [this love] in his freedom, and surpasses it only in the direction of the other’s ends”

Authentic Caregiver (cont.)

• As far as possible the authentic caregiver: --- looks at what the other person is about ---does not manipulate the other according to

his/her own wants and wishes ---does not try to shape the other in his/her

own image ---moves beyond him/herself in helping the

other, i.e. transcends him/herself

Authentic Caregiver (cont)

• When Sartre says that authentic love involves the one who loves unveiling the other’s being in the world, the term ‘devoiler’ literally means ‘to take off a veil.’

• This can mean uncovering what was not seen before. The authentic caregiver values the person not for what they think this person could become, but for what they are in themselves

Authentic Caregiver (cont.)

• But the authentic caregiver does not only protect/support the other, but also challenges the other

• We can illustrate these concepts via an example of a typical adult-adult relationship:

----A loved other’s real presence challenges my fantasies and images

----To love authentically, is to enjoy this challenge. This is the idea of positive conflict

Authentic Caregiver (cont.)

• Applying these ideas to a caregiver-dependent relationship:

----both protective behavior and positive conflict are necessary to the caregiver role

----even as a young adult, Temple Grandin, who ultimately became self-sufficient, needed help/protection from caregivers

----a fortiori, help/protection are absolutely crucial to dependent autistic adults

Authentic Caregiver (cont.)

• Yet, positive conflict is crucial to the authentic caregiver’s role

----Temple Grandin’s mother pushed her to spend summers away from home with her aunt, and to attend college

-----For any dependent, the authentic caregiver continues to “raise the bar” above the person’s head to help them take on higher level projects and activities in the world

In Sartre’s own words:

“Help is opposition overcome….if someone has to help me, I have to pull on the person pulling me, that is, I go in the opposite direction—the form of a struggle overcome.”

So on a Sartrean view authentic caregiving is ultimately reciprocal:• It involves that the caregiver experiencing the

other as a unique, irreducible human being in his or her own right.

• To the extent that the caregiver is truly open to the other this can be a source of enrichment and joy

• As the one receiving care, via positive conflict, moves forward in the world, this can be a source of profound satisfaction

Sartrean view (cont.)

• Nevertheless, the caregiving can be difficult, and can, of course, cause suffering.

• The question remains is it unfair that the family has the core responsibility of care, with little to no help from society at large?

• Thus put, the issue comes down to whether there is a genuine, acceptable basis for societal obligation to disadvantaged others.

The Evolution of Sartre’s Notion of an Ideal Society

• Early existentialist period (1940’s): sine qua non of an ideal society was freedom

• Middle Marxist period: sine qua non of an ideal society was equality

• Hope Now: interviews completed 3 weeks before his death: underlying freedom & equality, the most fundamental principle of an ideal society is fraternity

Hope Now: Vision of an Ideal Society

• Responsibility is felt by each for all• There is an affective component: a sense of

community: Kehila• There is a “face to face” encounter• These three factors can promote a sense of

responsibility on the basis of working together through humanistic measures

So, on Sartre’s view, we all have a responsibility to dependent adults• As part of our kehila, we can all benefit from a

‘face to face’ encounter with those adults who need our help and support

• In giving support authentically, we endorse their ‘otherness,’ their unique, irreducible humanity

• We support their pursuit of their own projects via positive conflict & our own transcendent work

Given this, what is our duty to the emerging adult with ASD?

• We need to experience their irreducible humanity in ‘face to face’ encounters

• Given the evidence that their ability to live independently can be so limited, we need to:

----recognize a duty to support and engage with them that extends beyond family ties

----see this duty not as a burden, but as a natural, and fulfilling, part of communal life

Our duties to the emerging adult with ASD (cont.)

• However, regarding the support we give: ---It should never end up, by default, as

custodial care. ---We need to ensure these emerging adults

can use their strengths/interests as effectively as possible.

---Via use of ‘positive conflict,’ we need to ‘raise the bar’ just above their heads.

Some Ways to Help the Individual ‘Emerging Adult’

• Highlight the ‘I’ in IEP, helping parents to: ---Find ways to utilize & expand upon special

strengths ---Determine when certain relative

weaknesses should no longer be targeted ---Be sure that adaptive skills are addressed ---Use partnerships with mental health

professionals to shape and modify these plans

• Make sure that publically funded research on ASD reflects these duties by moving the bulk of this funding to pilots which involve

---treatment protocols for children, teens and adults

---clinically significant measures concerning real life, pressing issues ---amenable to society-wide implementation

Some Ways to Fulfill these Duties on a Societal Level