Anaheim February, 2010

Go Bolts!

Assistant Clinical Professor, Dept of Psychiatry, University of California at San Diego School of Medicine Faculty, Interdisciplinary Council on Developmental and Learning Disorders

ICDL Faculty – minimal - review of clinical write ups, travel and room for meetings, token honorarium for cowriting and running Southern California Institute NIMH/ Duke University – minimal – administrative time for pharmacogenetic research NIH R21 grant/ San Diego BRIDGE Collaborative – minimal – token honorarium for ongoing consultation and participation

Feder 411
1980 – BU: math and Mass Assn for the Blind 1990 – Hawaii: Bernie Lee 1992 – ‘Matt’ 1993 - DC: Greenspan, Wieder, et. al. 1996 – San Diego: neurobehavioral psychiatric • 2010 – ICDL, SDPS Ethics, BRIDGE, CAPTN, SCART • (etc: dance, engineering) • • • • •

The Autism File: Becoming More Matthew January 2009
• Traditional Intervention: ABA – really worked and met goals: he learned to sit • Traditional Medicine – indispensible to success • Family therapy – time to step back and reflect • SL - long term, wonderful engaging relationships • SIOT – ‘ah ha!’: let him stand, big activity, etc. • Nutrition, VT, Tomatis, dogs, dolphins.. • DIR/Floortime – really worked and met goals: he learned to survive

This is not a DIR/Floortime talk
And my kid is not your kid but context is important

DIR
• Broad – whole child, supports family • Welcoming – all about building love • Enriching – closeness can bring progress

DIR in a nutshell
• Developmental levels – from regulation, to warm trust, and then a flow of enriching interactions • Individual Differences – sensory, motor, communication, visual-spatial, cognitive, etc. • Relationship Based – all about connecting, and making time with others for support and help

To learn more on DIR®/Floortime™
• Icdl.com – free podcasts and downloads • Circlestretch.com – San Diego regional website • Pasadena 2/13/10 – Pasadena Child Development Associates • Free community support groups

• Considering medication • Case examples • Your experiences

FDA Approved Medications for the Treatment of Autism
• Risperdal - 10/06 irritability associated with autistic disorder, including symptoms of aggression, deliberate self-injury, temper tantrums, and quickly changing moods, in children and adolescents aged 5 to 16 years. irritability associated with autistic disorder in pediatric patients ages 6 to 17 years, including symptoms of aggression towards others, deliberate self-injuriousness, temper tantrums, and quickly changing moods.

• Abilify - 11/09 -

Thanks and Goodnight…

Ok, there’s more to it…
• The main question: Are medications a good thing for people with autism and related conditions? • Involves: medical ethics, the FDA, Evidence Based Medicine, how little we know, informed consent, family choice, working with a doctor, and, yes, what we do know about medications and how to sort out medication options

Good Medicine
• Good = it might help (help what?) beneficence • Good = it won’t cause bad side effects ‘Do No Harm’ – nonmaleficence

1. Beneficence – doing good (and how do we know it might be good? Evidence based medicine) 2. Non-maleficence – risk vs. benefit 3. Autonomy – letting the patient (or a family) make decisions. Requires informed consent, no deception, confidentiality, good communication 4. Justice – what’s the right thing to do? – fairness, equality, e.g., equal access to services and resources, allocation of resources – competing morals: treat everyone the same? Or give people with more needs more care? Wise use of resources, respecting individual and family choices, respect for morally accepted laws (e.g. child abuse laws, avoiding aversive practices) *Beauchamp TL, Childress JF. Principles of Biomedical Ethics. 3rd ed. New York, Oxford: Oxford University Press, 1989.

4 Main Principles of Medical Ethics*

History of Trying to do Good
• Food and Drug Act of 1906 – safe medicines, not diet pills from tapeworm eggs • Flexner Report on Medical Education 1910 – medical care has risks and so medical education requires standards

The FDA
• Approves medication for marketing for specific symptoms of specific conditions • Allows doctors to use medications for whatever they think is appropriate

FDA Approval of a Medicine for Marketing
• Requires studies showing it works for some symptoms of some condition • Safety studies – now for kids too! • Difficult process • Expensive process

It’s Especially Hard to Do Studies On Medications in Kids with ASDs
• Kids are hard to find • Kids have multiple ‘diagnoses’ • Kids with ‘Autism’ are a very mixed group

New studies….
• NIH Duke U CAPTN ASK-PARCA • Efficiency Studies (vs. Efficacy Studies) • Pharmacogenetics • But these are few and results are pending

The upshot….
• Once a medication is approved, it is unlikely that a drug company will pursue other approval for specific uses, unless there is a big market that will offset the costs of research and the approval process • Most psychiatric medication for kids does not have FDA approval for marketing and is officially ‘experimental’

In the meantime… doctors prescribe, with, we hope:
• adequate education (about grade 26…) • respect for serious illness, side effects, and drug interactions • steady care • clinical judgment, based on clinical experience

Clinical Judgment
• • •
Doctors have to make rational guesses based on… Experience with the condition Experience with the medications Experience with other neurobehavioral and medical conditions (and so less likely to miss something important) Experience with side effects, drug interactions Experience with the terrible things

• •

Doctor’s Experience
• Often limited • ‘In my experience’ = seen one • ‘In a series’ = seen two

But Doctors Do Have Experience with Terrible Things
• Morbidity – severe side effects (e.g. hepatic failure, etc. etc.) • Mortality • House of God: “Did you give him ‘roids?” • Doctors, if anyone, should know from experience that we need to avoid trouble

Avoiding Trouble
• Good care: follow up, AIMS, labs, etc. • Laws governing medication • Report medication problems to the FDA • Talk to colleagues • Informed consent: family choice

Family Choice
For a condition that is likely to present lifelong challenges Especially one that has severe symptoms and impact We must defend the right of families to know about their options And give them a reasonable choice about what they want to do, based on family culture and values • Family circumstances and family values are preeminent in this situations. For some families meds are a last resort, and for others it seems wrong to withhold them. • Medications can give hope - essential to survive the journey - yet giving unfounded hope is cruel • Family choice is the heart of truly informed consent • • • •

• • • • • • • • •

DIAGNOSIS:  TARGET SYMPTOMS: TREATMENT PROTOCOL: ALTERNATIVE TREATMENTS DISCUSSED: POSSIBLE RESULTS OF NO TREATMENT: SIDE EFFECTS DISCUSSED: FDA LABELING DISCUSSED: ‘nearly everything is experimental’ CONSENT AND ASSENT DISCUSSED: COMMENTS/QUESTIONS/CONCERNS: ‘we have to track this fairly closely’ INFORMED CONSENT IS AN ONGOING PROCESS

With so much to consider, why use meds at all?
• Medication helps many kids, sometimes dramatically • Moreover, doctors may be duty bound to discuss meds, even if most are not FDA approved for use for kids, for ASDs, or for certain symptoms of ASDs • Information on medication for autism is part of good medical care

Good information is part of good medical care
• Failure to consider medication may rob families of choices that could help, and perhaps allow harm that could have been avoided. • So people try to define the standard of care, developing practice guidelines • Hence the focus these days on ‘Evidence Based Medicine”

Evidenced Based Medicine
• Sackett, et. al. British Medical Journal 1996;312:71-72 (13 January) • “the conscientious, explicit, and judicious use of current best evidence in making decisions about the care of individual patients.”

Meaning… what?
• integrating clinical expertise with systematic studies • consideration of clinically relevant research • and respect for the individual’s predicament, rights, and preferences

Some People Misunderstand or Misuse the Concept of Evidence Based Medicine Cost cutters – e.g. insurance companies, school

districts, government • Clinical medicine is driven by patient and family concerns • For example, the recent mammography recommendations which were roundly rejected in the world of clinical medicine.

We Would Like Gold Standard Evidence
• Randomized trials and systematic reviews of randomized trials, are the ‘gold standard’ • Double Blind Placebo (or wait list) Controlled, prospective, randomized studies, with enough subjects to have the statistical power and a well defined population of subjects to find out something meaningful

Less than perfect is the norm…
• Some questions about treatment cannot be ethically studied with randomized trials, e.g., grave conditions that cannot wait for such trials to be conducted. • We must look at the evidence we do have to guide clinical care. • Often from other populations (e.g. age, gender, level of challenges), disorders with similar symptoms (OCD, depression). • It is easy to have narrow or emotional reasoning, placebo effects References: How Doctors Think – Groopman; Science and Fiction in Autism – Schreibman; Lies, Damn Lies, and Science – Seethaler

EBM is a tricky combination:
• We need current best evidence, otherwise medical practice is out of date. • We need good clinical expertise and judgment, for even excellent external evidence may be inapplicable to or inappropriate for an individual patient.

Evidence Changes Over Time Five Year Half-Life….
• Half of medical knowledge changes every 5 years • So 50% of what we ‘know’ is wrong • And we don’t which half

• Find a doctor you like and can work with • Keep the doctor in the loop – doctor must have data • Don’t overwhelm the doctor with data • Doctors can be confused with terms like “biomedical” • Respectfully offer resources – don’t expect your doctor to read a book for you, but do expect your doctor is interested in other opinions from other doctors

• Look for Basic Competence: APBN Board Certified Child and Adolescent Psychiatrists were checked for competence in assessing autism, and for use of collateral information from family, school, and other professionals. • Look for Honesty: AACAP = a promise to be ethical and do their best

The Role of Medication
• • • • • Overview Progress? A Good Enough Program A General Approach to Medication Gridding the Problem

• 1989 Magda Campbell: haloperidol helps social learning; others: methylphenidate causes side effects without benefit. • 1990’s - 2006: treating target symptoms, based on responses in other conditions to medications; lots of use of neuroleptics for aggression, etc. • 2004 Black Box warning for SSRIs in kids • 2006 – Risperdal • Early 2009 – Celexa ‘not working’ for OCD in ASD • Late 2009 - Abilify

• Most people consider meds because they feel stuck, maybe desperate • Emergencies: aggression, depression, others? • Lack of progress

• What do we want for our children? • The usual wish: a meaningful life
(socially, emotionally, maybe cognitively)

• Requires a plan, and medication alone is not a plan.

• self regulation, sensory, and motor function • trusting, supportive relationships • communication, maybe language • cognition & learning • living and life skills: home, school, work • compliance with important rules

• Are we asking too much of a child? • Of a family? • Of a school?

The Central Question
• Are you trying to improve an appropriate situation or make up for a bad one?

• Will they change my child’s brain and fix it? • Could they injure my child? • What should I expect?

• To avoid ‘losing time’ while pulling the program together • To ‘do as much as possible’ • Awakenings – are we trying for a miracle?

• We do not know enough to say ‘you really should medicate’ • If there is no emergency, you have more time to think about it • When parents differ, it can be an opportunity for more thoughtful planning • Side effects e.g., behavioral activation (SSRIs), increased perseveration (stimulants), sedation (some anticonvulsants, others). • Treatment teams often overuse medications, ignoring engagement, other factors.

• Complete workup a must: consider (24 hour) EEG, labs, etc. along with complete history, physical, time with the child and family, and collateral information from school, therapists, etc. • Diagnosis: a hypothesis meant to focus treatment, as well as other possible & co-occurring diagnoses. The 5 axis system helps, and new dimensional axes may work better • Grid and prioritize target symptoms and possible treatments and fill in likely +’s & -’s, in a flexible decision matrix • Availability - doctor MUST stay in touch with family and school

Think carefully before rapid, large changes in dose or before changing more thing than one thing at a time.

The Bottom Line:
• medication probably does not treat core symptoms, but might make some target symptoms or cooccurring conditions better, creating more affective availability so that we can make progress, if you can avoid significant side effects.

Gridding Target Symptoms

• Target symptoms • Prioritizing Symptoms • Core Symptoms

Name Your Symptoms…

Core Symptoms?
Relating Communicating Healthy development: connected, regulated emotions that breathe life into adaptive thinking and planning

• Support regulation and co-regulation by treating, e.g., impulsivity, inattention, anxiety, rigid thinking, perseveration. • Widen tolerance of emotions so the person is less likely to become overwhelmed. • Treat co-occurring conditions, e.g., depression. • Might promote abstract reasoning and thinking.

Specific Psychotropic Medications
• Try to always know the brand and generic names of medications • Rxlist.com is often helpful • The following list and the information provided is not comprehensive; please talk with your own health care provider for further information

Stimulants
• Methylphenidate: Ritalin, Concerta, Metadate, Methylin, Focalin • Dextroamphetamine: Adderall, ‘mixed salts’, Vyvanse • Slightly different mechanisms. • Similar possible side effects: appetite, sleep, withdrawal, depressed mood, unstable mood, tics, obsessiveness, etc. • Drug diversion vs. drug abuse risk • ‘ADHD’ and ASD • Often makes a good plan workable.

SSRIs
• One of many classes of ‘antidepressants’ • Can really help depressed mood, maybe anxiety, less likely obsessiveness (although works well for that for ‘neurotypicals’) • Prozac (fluoxteine), Zoloft (sertraline), Paxil (paroxetine), Luvox (fluvoxamine), Celexa & Lexapro (citalopram). • Similar possible side effects: ‘behavioral activation’, weight gain (and loss), mood instability, lower seizure threshold, etc. • Black box warning about suicidal thinking vs. lower rates of actual suicide in people treated with SSRIs

Neuroleptics
• Zyprexa (olanzapine), Risperdal (risperidone), Abilify (aripiprizole), Seroquel (quetiapine), Geodan (ziprasidone), Haldol (haloperidol), Mellaril (thioridizine), Thorazine (chlorpromazine) and others. • Discovered while looking for cold pills, developed for symptoms of psychosis. • Helping aggression, mood stability, and miracles? As well as tics, and adjunct for depression, perseveration, etc.? • Side effects can include weight, lipid, and sugar issues, as well as seizures, fevers (NMS) and new abnormal movements (TD), stroke (elderly), cardiac • Should we always consider neuroleptics?

AEDs
• Anti-Epileptic Drugs (aka anti-seizure medications) • So many and all so different in character • For seizures, and for mood stabilization • Might help other medications work better (stimulants, antidepressants) • Combined pharmacology vs. polypharmacy • Sudden sopping might make seizures more likely

Specific AEDs
• Depakote (valproic acid, valproate) – pretty reliable, easy to load, watch levels, platelets, bruising, liver, pancreas, carnitine, menstrual irregularities, weight, sedation. Problems when using with Lamictal • Tegretol (carbemazepine) - ?reliable, watch levels, blood counts, EKG, lots of drug interactions, weight gain, sedation, rash • Trileptal (oxycarbezine) – ‘Tegretol light’?; motor problems, electrolyte issues, rash?

More AEDs
• Keppra (levetiricetum) – easy to use, but does it work? • Lamictal (lamotragine) – mood stability, ?better mood. Must go slow, and watch for rash • Topamax (topiramate) – adjunct, may cause weight loss, loss of expressive language, usually need to go slow. • Neurontin (gabapentin) – Does it work at all? Does it harm at all? Does help pain syndromes. • Lyrica (pregabalin) – for pain in fibromyalgia, partial seizures • Zarontin (ethosuccimide) – for partial/ absence seizures; liver issues

Steroids
• LKS variant theory – epileptic aphasia – 24 hr EEGs • Regression at a young age • Cell membrane stabilization in inflammation • So many side effects: cushinoid, moon face, hump, central obesity, peripheral wasting, immune compromise, skin striations, mood instability including depression and hypomania • Pulsed dosing regimens

Central Alpha Agonists
• Tenex & Intuniv (guanfacine), Catapres (clonidine) • Reducing ‘fight – flight’ sympathetic tone, which can help in many ways • Vigilance theory • Side effects can include sedation, dizziness, early tolerance • Mild medicine

Other Commonly Considered Medications…
• Straterra (atamoxetine) – for ADHD; may be as good as placebo, may act like an antidepressant (+/-) • Wellbutrin (bupropion, etc.) • Rozerem (ramelteon) – melatonin agonist • SNRIs – Effexor (venlafaxine), Cymbalta (duloxetine), Remeron (mirtazepine), Serzone (nefazedone) • Deseryl (trazodone) – antidepressant often used for sleep; cognitive side effects, priapism • Buspar (an azaspirone) – mild, serotonergic cross reactions

More Others…
• Lithium – great mood stabilizer; anti-suicidal; bipolar-ASD connection; levels, thyroid, kidney function • Namenda (memantine) – Alzheimer’s med – ‘antagonist of the N-methylD-aspartic acid (NMDA) glutamate receptor, this drug was hypothesized to potentially modulate learning, block excessive glutamate effects that can include neuroinflammatory activity, and influence neuroglial activity in autism’

Meds that I often avoid…
Paxil (paroxetine) - withdrawal Effexor (venlafaxine) - withdrawal Tegretol (carbemazepine) – hard to make it work Combo Depakote and Lamictal Tricyclics – Tofranil (imipramine), Norpramin (desipramine), Pamelor (nortriptyline); and, esp. good for typical OCD, Anafranil (clomipramine). Cardiac and blood pressure issues. • Monoamine Oxidase Inhibitors – Nardil (phenelzine) , Parnate (tranylcypromine), Marplan (isocarboxazide), Emsam (selegiline) – can be useful although dietary, blood pressure drop and hypertensive crisis must be considered; lots of drug-drug interactions • • • • •

Special Caution on Benzodiazepines!
• Benzodiazepines – Valium (diazapam), Ativan (lorazepam), Xanax (alprazolam), Klonopin (clonazepam), and others • Used so freely by many doctors and families • Problems nearly always outweigh risks • Addicting • Destabilizing mood • Interfere with learning • Interfere with motor function • Interfere with memory

• Ok early history • words at 12 mo but slow to gain new ones and they didn’t stick well

• 13 mo: sudden stimming, classic ASD,

but still cuddling • FH: sister PDDNOS now ‘better’, cousin ASD; others: anxiety, OCD • Sp Ed PK and lots of behavioral and language services. • medical: ?seizures, allergies to eggs, peanuts, amox, eczema *All names and identifying information have been changed

• ?Meds for anxiety in autism, Jan 2008 • Failure to make gains despite massive services

• • • • • • • • •

Autism SAFETY – fingers in eyes extremely perseverative (fans) anxiety over-activity tantrums language hard to take him out ?seizures.

• Mar 08: ‘break the door’ MOV00732.MPG (0:10)

So what meds might we consider?
• Autism • SAFETY – fingers in eyes • extremely perseverative (fans, light switches) • anxiety • over-activity • tantrums • language • hard to take him out in public • ?seizures.

Medications:
• Trileptal, EEG improved • Spring 08 Citalopram at 10 mg helps anxiety and a bit with perseveration

• Sept 08: Malingo Toya ‘song and dance’ (0:55)

Feder favorite toys

More Medication…
• Fall 08 Metadate CD 15 mg.

Video
• Mar 09: This Little Piggy (4:50)

Not there

Barely

Islands

Expands Comes back

Ok if notOk for stressed age

Co-regulate Engage Circles Flow Symbolic Logical Multicausal Grey area Reflective
3/08
3/08,3/07,3/08 3/08,3/07,3/08

3/08

9/08

3/09

3/08 3/08 3/08 9/08 9/08, 3/09 9/08

9/08 3/09 3/09

3/09

3/08,3/07,3/08 3/08,3/07,3/08

Sensor Postural y
Sensory seeking, distractible Auditory Visual Tactile Vestibular Proprioceptive Taste Odor

Response to Intent to Visual Praxis Communicatio Communica Exploration n te
Often unintelligible Perseverative Spots fans at distance; fingers in ideas; can expand w/ eyes; rare gleam support 1.focus on object ----3/08---Ideation ----3/08----

Best when core isCues into supported important words

1 indicate desires ----3/08---2. mirror gestures 3. imitate gesture 4. Imitate with purpose. ----9/08---5. Obtain desires 6. interact: - exploration -purposeful ----3/09---- self help -interactions

1.Orient ----3/08---2. key tones 3. key gestures

1.Mirror vocalizations ----3/08---2.. Mirror gestures 3. gestures

4. key words 4. sounds

----9/08---5. Switch auditory 5.words attention back and ----9/08---forth 6. two –word 6. Follow directions 7. Sentences 7. Understand W ?’s ----3/09-------3/09---8. logical flow. ----3/09---8.abstract 6. search two conversation. areas of room 7. assess

Planning 2. Alternate (including gaze sensory 3. Follow another’s gaze knowledge to do this) to determine ----9/08---intent. 3. Switch visual Sequencing attention ----9/08-------3/09---4. visual figure ground Execution 5. search for object Adaptation

• Learned to quiz him, and quizzing him • Can engage in some back and forth, coachable • Discomfort with him in public –so different from other kids - improving • Stress: eye issue harrowing, but improving as he becomes more connected. • MANY OF OUR FAMILIES HAVE A FORM OF PTSD!

Video
• July 09 – a whiff of symbolic capacity

• What works: playfully getting in his way, modifying
his ideas to make them mutual (e.g. run to fan become a chase and crash into couch, fan obsession becomes fanning him), getting him on his back, extending his ideas with fun engagement (piggy, dollhouse)

• What didn’t work: quizzing him on facts, adding
ideas too quickly

• Medications have been very helpful to this child,
allowing him to respond to developmentally supportive intervention.

Another Case Example: T

Severe Dysregulation and Aggression

About T :
• cute but very challenged little girl • failure to develop language, motor skills. • multiple medications, with side effects: sedation, staggering, trouble swallowing, bruising • ABA - DTT • Miller Method • DIR®

Medications for T: ‘Combined Pharmacotherapy’ vs. Polypharmacy

• • • • • • • • •

Depakote Carnitor Seroquel Trileptal Thyroxin Keppra Lithium Lamictal (Prior history of many others including Namenda, other neuroleptics, etc.)

Video clips
• Clip 1: 04/08 • Clip 2: 08/08 • Clip 3: 12/08

Modest Improvement Over Time
• 4 – could sit a bit, give me a rare glance, take off my post-it’s on occasion • 8– moments of gleam and a couple of circles when I swipe her things… • 12 – more attached to the book, and I am able to use it as leverage for more engagement, many circles, and the bare beginnings of flow, no real sense of symbolic (but worth a try)

FEDL - T
1 (not there) Regulate 2 (barely) 3 (islands) 4 (ok w/ support) 5 (comes 6 (ok back) unless stress) 7 (ok)

4 4 4 8 4 8 12 12 8 12

8

12

Engage Circles Flow

Symbols

4

8

Individual Differences - T
Sensor Postural y
Sensory seeking… Unstable, made worse by meds

Response to Intent to Visual Praxis Communicatio Communica Exploration n te
Some Difficulty A relative area comprehension of indicating with of difficulty sharp redirection gesture, Dysarthric – 1. Mirror 1. Orient vocalizations 2. key tones 2.. Mirror gestures 3. key gestures 3. gestures 4. key words 4. sounds 5. Switch auditory 5.words attention back and 6. two –word forth 7. sentences 6. Follow 8. logical flow. directions 7. Understand W ?’s 8.abstract conversation. Ideas at times, without effective planning nor sequencing

Auditory Visual Tactile Vestibular Proprioceptive Taste Odor

1 indicate desires 2. mirror gestures 3. imitate gesture 4. Imitate with purpose. 5. Obtain desires 6. interact: - exploration - purposeful - self help -interactions

1. focus on object Ideation 2. Alternate gaze Planning 3. Follow (including another’s gaze sensory to determine knowledge to intent. do this) 3. Switch visual Sequencing attention 4. visual figure Execution ground 5. search for Adaptation object 6. search two areas of room 7. assess space, shape and materials.

Reflection:
What worked:
• • • • Miller Method – learned some systems ABA - content mastered, some is somewhat functional, e.g., “turn the page”, some is not functional (points to ‘green’ in trials but doesn’t know what it means with the book) I can use her desire to ‘read’ the book to get some lovely connected moments She can be a bit more regulated bouncing a bit on the ottoman, steadying herself on my arm, and that seemed to help her be emotionally connected to me too

• Medication: pros and cons: can’t live with them, can’t live without them; ethical concerns about management of medications when function is impossible without them but risks are clearly present.

Sample Case 3 - K

Aggression and Rigid Aggressive Play Themes

About K:
• Why he came to me: aggression toward peers in private kindergarten. Removed anyway and placed in public setting. • Main symptoms: Receptive language, difficult to understand speech, reactive to busy environments, low tone, active, impulsive, sensory seeking, rigid, controlling, aggressive

Medication:
• Risperdal liquid – carefully titrated; works well but so hungry on it! • Abilify – to try to reduce the Risperdal load • SSRIs – helped with mood, but did not help perseveration, and created overactivity

Course over four years: K
11/05 Rigid, aggressive, hits in ‘play’, not really symbolic 11/06 Allows me to join his aggressive play on his team 11/07 Increased complexity of aggressive themes; able to play with cousin and brother in water fights, facilitated by dad 11/08 Creates a dangerous race, still very controlling, but also torn between me and dad, and nurturing, creative & symbolic with me; able to play with cousin and brother in games that are competitive but not overtly aggressive

5/09

Talking with me and parents about problems at school

Video
• 112508

FEDL – Sample Case 3
1 (not there) Regulate 2 (barely) 3 (islands) 4 (ok w/ support) 11/07 5 (comes back) 6 (ok unless stress) 5/09 7 (ok) 11/05 11/06 11/08,

Engage

11/05

11/06

11/07

11/08,

5/09

Circles

11/05,

11/06

11/07

11/08

5/09

Flow

11/05

11/06, 11/07

11/08

5/09

Symbols

11/05

11/06, 11/07

11/08

5/09

Logic

11/05, 11/06

11/07, 11/08

5/09

Individual Differences – Sample case 3
Sensor Postural y
Sensory seeking… Auditory Visual Tactile Vestibular Proprioceptive Taste Odor A relative strength; A bit clumsy impedes rapid reciprocity in the moment 1 indicate desires 2. mirror gestures 3. imitate gesture 4. Imitate with purpose. 5. Obtain desires 6. interact: - exploration - purposeful - self help -interactions

Response to Intent to Visual Praxis Communicatio Communica Exploration n te
Trouble managing more than one thing at a time Can barely tell ‘why’ we fight or what we fight about Can’t track conceptual discussion of the reasoning behind events and play 1. Orient 2. key tones Dysarthric – A relative Ideas becoming unintelligible strength; more complex Logical Frustrated with support discourse is looking for Adapting to difficult (e.g. at things problems that best Some ability to come up (e.g. hedonistic: work with when my cheating gets shapes and character is you objects to solve injured, faints, disqualified) problems in etc.) 1. Mirror play. Ideation vocalizations 1. focus on 2.. Mirror object Planning gestures 2. Alternate Sequencing 3. gestures gaze Execution 3. key gestures 4. sounds 3. Follow Adaptation 4. key words 5.words another’s gaze 5. Switch auditory 6. two –word to determine attention back and 7. sentences intent. forth 8. logical flow. 3. Switch visual 6. Follow attention directions 4. visual figure 7. Understand ground W ?’s 5. search for 8.abstract object conversation. 6. search two areas of room 7. assess

Family:
• Dad works hard. Can facilitate kids when available. • Mom can set up playdates, engage cousin. Has to work hard to manage environment at home so that he is not in continuing conflict with older brother. • Brother is a good guy, and tries to play with him. But no one can really keep up with him. • Mom and Dad can play in office; however life at home is busy - hard to find time for Floortime.

Reflection:
• What works: office play with him and his parents to help them see what we can do; play dates with cousin, brother, facilitated by parents. Now we can talk too! • What doesn’t work: videogames, busy environments with many peers. • Why: He is still developing capacities for solid enough symbolic play to be able to engage with peers without becoming aggressive. His language and also his more subtle postural and visual challenges make it hard for him to play with peers. • Medication makes the plan possible. Without it he is so aggressive there is no working with him.

4. A series of three cases of children with Aspergers and Depression
• Partnering with a colleague • Aspergers and depression with suicidal thinking – a very scary combination • 2 of 3 clearly responding to SSRIs.

5 - Brief Example Self Injurious Behavior (S.I.B.)
• 30 year old non-verbal old • Severe clawing at chest • Not sleeping • No appetite • Great live-in aide • Engagement: support and expectations What medicine might you think about?

Zyprexa
• • • • • • • • sleeping, eating and engagement because he was engaged, he stopped S.I.B. cooking, riding, vacations a real life

6 - Brief Example ‘OCD’
Had come a long way before w/ ‘biomedical’ Bright but rigid, with ‘real’ OCD too (e.g. germs) Aspergers: verbalizes a lot but without connecting Years of work to accept use of medication But Medication (SSRI) does help OCD for him Engagement improving, gradual insight, and improved social function and reciprocal capacity • Lessons: SSRI might work for ‘OCD’ and ASD, and therapy over time can really work for ASD core • • • • • •

7- Brief Example: Stims 24/7
• A very active non-verbal 8 year old boy • Strings • Not sleeping: severe impact on family

Medicines you’d think about?

The Medication Angle
• Guanfacine – worked for months • Rozerem – worked for months • mirtazepine - working for months…

Intervention: The Engagement Angle
• Joining the string thing • Time, time, and more time • Eventual gleam and non-verbal communication about it

Video
• String play

8 - Brief Example: Transitions
• • • • • • 60ish male, modest verbal ability Extremely anxious and reactive Apparent PTSD + Autism Can’t stand any changes Minimally verbal Heavy and not exercising

So… medicine you might think of?

The Medication Angle
• Effexor, then reduction over years • Topamax, then reduction when getting thin • Significant improvement in anxiety • Significant improvement in reactivity • Significant improvement in weight control • Significant improvement in engagability

The Engagement Angle
• • • • • Engagement has had gradual benefit: Enjoys his meals, Goes on camping trips Engaging, graduated exercise Does well in an active day program Remember routine medical care!

9- Brief example: Running Off
• • • • • Big teen male with mood instability On 1200 Trileptal Limited verbal ability Inclusive high school Urgent problem at school What might you try?

The Medication Angle
• Zyprexa to Stabilize • Increased the Trileptal over time • Weight gain, but can’t totally stop neuroleptics • Abilify replacing Zyprexa • NB: RSR’ on EKG – got Cardiology Consult to think through risk of Toursades de Pointes

The Engagement Angle
• Loping after him worked really well, as long as the person was calmly following, and there was a gate where he was running.

Video
• Tremor check…

Abnormal Involuntary Movement Scale (AIMS)

10 - Brief Example:
• Young boy with autism, self injurious behavior, low IQ and inattention; institutionalization recommended but family declined • Compliant, and behavioral intervention helps with sittings and following directions • Various meds tried early on, settling on methyphenidate ( ‘MPH’, like Ritalin, etc.) for attention and central alpha agonists for tics and withdrawal crankiness

The Engagement Angle
• Lots of intervention, at home and school with everyone on the team (family, SLP, OT, ED, etc.) centered on co-regulation, engagement, and reciprocity • Inclusion* early on, with social facilitation, tutoring using his interests to scaffold academics *Read Paula Kluth’s books e.g. You’re Going to Love This Kid

Medication, Outcomes, and Lessons Learned
• Gradual improvement over many many years in academic and social function, increase in testable IQ to superior ranges; ok in church groups, interest groups, ok at 4 year college (with hovering) • Academic function and success of placement absolutely dependent on MPH. • More social off of MPH, more ‘paranoid’ on it, sleeps less, eats less. But benefits outweigh risks Try not to put a ceiling on possible progress.

• Look at the whole picture • Be careful with meds • Engage the Child Your Experiences?

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