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OCD in Youth with ASD: Special Challenges in Diagnosis and

TreatmentJonathan Hoffman, PhD, ABPP

Neurobehavioral Institute & NBI Ranchwww.nbiweston.comInfo@nbiweston.com

Dr. Hoffman has no financial disclosures that would be a conflict of interest with this presentation.

Cases described have any identifying details changed.

Context

• Prevalence rates of OCD in children & adolescents with ASD vary from 2.6% to

37.2% (Postorino et al. 2017); likely much higher if symptoms resembling OCD

included (we don’t have a generally agreed upon term for this).

• OCD in context of ASD likely to be more severe, complicated, & associated

with poorer insight than OCD alone (see Wikramanayake et al., 2018).

• ASD onset earlier than OCD onset.

• When you think about it, OCD makes sense as an ASD co-morbidity.

• ASD changes EVERYTHING about OCD! (?)

It works the other way around too

• Between 3-7% of those with OCD might be diagnosed with ASD; “a

shared social competence impairment” (Chasson et al. 2011).

• Therefore, we need to be cognizant of the possibility of ASD in OCD

referrals.

• Moreover, ASD might be a missed or undiagnosed condition in high

achieving/talented children and adolescents with OCD.

What ASD changes for kids with OCD

• How they experience mind, hence obsessions differently.• Given sensory issues, what a compulsion does for them is not the

same.• Why their parents accommodate. • How they will understand the goals of treatment.• How treatment has to be modified – one size does NOT fit all.• Duration of treatment.• Generalization.• What their future opportunities, relationships might be.

Youth?

• Takes in a lot of ground.• OCD alone is a very different experience for young kids, tweens, &

teens.• Kids – lack norms, understand OCD as “worries.”• Tweens – OCD makes them feel like they are not “the same, don’t fit in.”• Teens – identity issues, want to get out from under parents’ control, insecure

about what they look like.

• This is much more the case in ASD.• But, then again, they are kids too, and have “regular” kid concerns

just like any other kid.

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ASD?

• There is vast heterogeneity, that’s why it’s called a spectrum.• Adaptive functioning (Level of support needed, social skills)• Cognitive Ability• Verbal ability• Executive Functioning• Processing speed• Presence of co-morbidities• Family structure and level of understanding• Strengths• Resources

• Which all inter-relate to produce the clinical presentation we observe.

Special challenges?

• OCD issues that tend to arise more in youth with ASD than in youth with OCD who do not have ASD, or in adults with ASD/OCD.• OCD issues that are very thorny for practitioners to deal with in this

population.• OCD issues that will impact life outcomes for youth with ASD.• Parenting issues that also will have a major impact on outcome.

Agree? OCD Phenomenology in youth with ASD

• OCD is not as intrusive, if at all.• Not distressing or perceived as a problem in many instances, at least

to them.• Less resistance to OCD urges.• Less systematized.• Yet can get very upset if asked to stop or interrupted.• Why?• More like a drive on autopilot- filtered through, intersecting, or fused

(?) with domains of “different mindedness.”

As “JK” explained

• “I was like a mouse in a maze that didn’t realize it was in a maze, and I was fixated on getting to the cheese, even though getting the cheese was not going to mean anything really, and I didn’t realize I had no sense of smell, and was relying blindly on pattern recognition and just bumping into walls, but wouldn’t stop even if someone told me I could just walk over the wall of the maze and do something better.”

• Now 20, as tween was having a paranoid Sx, severe contamination fears; as teen would spend hours on fringe political websites, unable to function in school much of time, totally socially isolated in real life

Or “Suzie”

• “ I don’t deserve to be a person (acted like a cat).”

• Started treatment age 6, extremely high intellect, but severe processing issues, severe literality, wild mood swings, aggressive, would even take on police if think I’m right,” tics, lived from ritual to ritual –counting, touching, repeating movements, could not really explain why –JRE OCD

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Cl referred for OCD, suspect ASD

• Discuss with parent or caregiver before doing ANYTHING.• Explain value of finding out.• This may or may not be well-received.• Respect their POV, you can always revisit.• If it’s a go, do the best you can with the measures available, but don’t

over-rely on psych testing to provide all the info you need.• Gather info from multiple sources (as initial info often inaccurate).• Conduct behavioral observations – what you can do with a nonverbal

youth.• Use your clinical judgement (uh-oh).

We’re often asked if a kid’s symptom is OCD or an RRB (see Farrell 2016)• RRB tends to appear earlier in life (<5) than OCD.• More likely RRB if antecedent is over-arousal, boredom, social stimulation;

lean more to OCD if antecedent is an intrusive image or thought, urge or impulse, feeling not “just right.”

• More likely RRB if functionality is fulfilling curiosity, or seeking gratification, i.e. like the behavior; more likely OCD if trying to avoid a discomfort or in reaction to fear or anxiety. Conduct a functional behavioral assessment.

• Emotional reaction to symptomatology is telling.

• RRP less context dependent than OCD.• However, bear in mind this isn’t written in stone; and a given youth can

have OCD and RRB, with a variety of different functionalities.

How important is it really to differentiate RRB and OCD?• The similar behavioral profiles of these disorders presents the potential for

confusion regarding diagnoses and intervention efforts (Jiujias, Kelly, & Hall 2017).

What is the boundary between OCD & RRP or can you unscramble an egg?

• In clinical practice, RRB and OCD are often so intertwined and synergistic is it impractical and unrealistic to “tease them apart”; (and besides, they are occurring in “a whole person” & they both can be addressed with similar CBT).

Helps also to be cognizant of• Diagnostic Overshadowing – misattribution of OCD symptoms to

ASD; More likely when reason for referral is:• Disruptive behavior• Social Skills Deficits

• Literality – occurs when colloquial language meaning does not entirely match up with formal language.• Responding no to if they handwash because they finger scrub (this impacts

psychoeducation & treatment as well).• High IQ, verbal ability, talent, achievement level:• Often used to mask, rationalize, justify OCD or simply avoid treatment.• OCD is their “superpower” (Maybe it is?).• Still, irrelevant compared to adaptive functioning.

Let’s examine this more closely Or, for that matter, OCD and OCD-like Sx

• Discerning a true boundary is somewhat murky.• And perhaps of dubious relevance in designing psychological

interventions.• An ASD SX can morph into OCD, or not, based on many factors,

including verbal ability, creativity, and “leading questions.” (?)• Remember, treatment of OCD is not about content, ASD or no ASD.

• So, for practitioners, getting excessively caught up in diagnostic minutia is NOT helpful.

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“Paul”

• Age 14, high notoriety due to a major, unusual talent, hyper-logical, overcontrolled in public, massive outbursts at home if feels he is being ignored in any way at home, has no real friends, arranging and ordering rituals, parents extremely accommodating, parents understand what the situation is, but fear challenging the OCD will ruin chances for very least, a full ride in college.

Contrast with “Sam”

• Used to ride in car in something like a car seat, though was a teen and very large, would touch almost anything, so parent did everything for him, Borderline intelligence, had to watch same movies over and over, repeated dialogue, postured, ate only a few foods, talked to an imaginary friend who would make fun of him, and he’d scream at to “shut up.”• Wanted something bad –to be “an adult, go to college like my sister.”

(Modifying ACT concepts)• Now living in independent apartment, has a job, has first girlfriend. • Don’t’ be afraid to “think big”!

Should you tell a child or teen being treated for OCD that they have ASD, and, if so, how?• Whose decision is it?• Age of child (teens are hardest, usually).• What would be the benefits to OCD treatment?• Any downside?• Is the child or adolescent ASD curious?• Do they talk about being different?• Prepare parents for making this disclosure, where and how.• Dealing with the aftermath.• If they ask difficult or awkward questions, what to say.

Tips for getting off to a good start

• It’s critical to have parents, caregivers onboard from the get-go; if possible, get them into parent training, introduce them to parents in the same situation. This is not always feasible and sometimes the caregivers disagree.• Listen carefully to them, validate the difficult and stressful situation they

are in. Guilt-tripping, fear mongering & power struggles are a waste of time. MI helpful here. Goes without saying?• Make sure the youth, caregiver, preferably all concerned understand the

nature of treatment, prognosis, and it’s purpose (You can modify ACT for ASD). Don’t rush psychoeducation or avoid discussion of costs & logistics.• You have the right to turn down or refer out the case.

Parent training

• Redefines what being an effective parent for youth with OCD in context of ASD means.• Short-term pain for long term gain philosophy.• Focus is on concepts and process vs. immediate

outcomes (easier said than done).• Can be done in multi-parent therapeutic or support.

Groups.• Teaches self-care and stress management.• Provides conflict resolution and problem-solving skills.• Emphasizes doing “normal” things.

Establishing a foundation for OCD success with• Emotional education.• Emotion regulation training.• Social skills training.• EF, working memory training.• What to do if there is a setback or emergency.• Set the level of treatment dose (and setting) according to your

assessment.• Manage but don’t dash expectations.• Take readiness for change VERY seriously.

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Address other issues, and there are often many• ADHD• Tourette and Tic

Disorders• Sensory challenges• OCD related disorders

(asses for all of them)• Depression (suicidality)• Psychotic Spectrum• Regular kid/teen stuff • Medical/PANDAS

• Other anxiety disorders/Social anxiety• Social Isolation• Eating or sleeping

issues• SUD• Misophonia• Social media/gaming

• Rigidity• Hyperarousal• EFD/LD• BFRB• Gender dysphoria• NVLD• Trauma• Family problems• Vocational directions

(teens)

“Bill”

• ASD, OCD and Schizophrenia, first met age 19.• Parents have untreated similar issues.• Would be OK if he stayed in his room studying forever, “if it made him

happy.”• Refused recommendations for residential.• Where are we now?

Olga

• Referred age 12 after severe medical issues, social comprehension issues, impaired social judgement, constant reassurance seeking of safety, fear of getting kidnapped or hurt, restricted interests (magic).

• Turned out to have Hashimoto's encephalopathy (HE) - “a rare disease associated with Hashimoto’s thyroiditis, an autoimmune thyroid disease that's the most common cause of an underactive thyroid (hypothyroidism) in the United States. It affects the brain, contributing to issues such as seizures, confusion, or dementia.” (Wikipedia)

“George”

• Age 10, ASD, RRB, need for symmetry, perfectionism, all worsened after being bullied in elementary school.

• Family has very limited resources, mother and father in open conflict over whether George needs help.

“Ethan”

• Age 16 male, speaks in a foreign accent, but born in US, only did this because it felt right, has to enunciate without errors or repeats, decided he was really female, made his first friends on Internet, then meet-ups. Decided until his body felt right, it made no sense to do Anything which caused him discomfort.

• Gregg age 13, decided that the only way to control his feelings of disgust, fear of germs was to become orthodox, and be totally “kosher,” i.e. safe, in all ways.

CBT/ERP treatments for kids• Are conceptually the same, but need to be modified to be “ASD user-friendly.” • Should be “developmentally scaled.”• Need to be explained in less abstract ways (but this varies).• Have less “cognitive” loading, more behavioral focus than in OCD alone.• Benefit from putting into a visual format, e.g. “cartoon technique” Or into an activity (CBT yoga).

Use your sense of humor as needed.• Sometimes need to incorporate a preferred interest.• Can be easily thwarted by caregiver accommodation, this is mission critical to address; Family

accommodation is associated with more severe psychopathology and poorer clinical outcomes (Lebowitz, et al. 2016).

• Require more repetition and practice than in OCD alone.• Need ongoing focus on generalization.• May need support from a token economy (but try to find out what the youth values non-tangibly).

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Why treatment is hard for these kids

• They usually abhor change (want sameness).• They are very “now oriented” in general.• Very binary, when they don’t; know how to be ”in” they are often “all

out.”• Treatment challenges rigidities.• They don’t get the point.• They really want to feel “comfortable.”• It’s not that interesting, or fun.

Incorporating a preferred interest in CBT/ERP

• Can make the child more amenable to OCD treatment.• Can put OCD treatment into terms youth with ASD can understand.• Can increase the child’s or adolescent’s focus.• Can accelerate progress.• Makes for a more pleasurable treatment process, with less pushback.• But risks making an intense interest even more compelling.• Sends the wrong message?

“Joel”

• Age 7, tells parents where they can walk, what they can say, says gets a “funny feeling” if they don’t, which he fears will never go away and get worse and worse.

• His special interest is Star Wars, can he become Jedi Knight fighting Darth OCD?

Parents accommodate OCD symptoms for all sorts of reasons• Not knowing better• “Spun-glass” theory • Actually being advised to do this• Kindness and empathy• Want to avoid conflict• Fear child or teen will hate them• Just plain fear (aggression)

• Have their own issues (ASD or OCD too?)• Fear criticism about their

parenting from the relatives• Just too stressed or tired to deal

with it• Don’t believe in the child or teen• Feel sorry for their child

Non-reportable

• Mocking• Punishing for Sx• Criticizing • Stopping talking to the child• Insisting they can stop if they really wanted to• They are faking• Saying they are destroying the family with the cost of treatment

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Exposure and response prevention

• Has the best evidence-base• In this population, RP more of the

focus• Skills-based approach context• Exposure targets often different in

ASD context• Using SUDS/habituation model may

not be helpful• The inhibitory learning model has

utility – distress and certainty tolerance, disconfirming

expectations, combining discomfort cues, conducting ERP cross-situationally• Theoretically, same mechanism of

change• Better functioning is good evidence

of effectiveness• IMHO may be applicable to

behaviors that resemble OCD “enough”• Why might exposures “work?”

Hierarchies for circumscribed OCD symptoms

• They don’t have to be graded, as this can feed into rigidity.• Sometimes you need to start with the proverbial “grain of sand.”• Remind frequently of counter-control.• Getting something done is ultimately less impactful than the correct

process.• Praise willingness to be discomforted a lot.

For less circumscribed, more OCD spectrum symptoms, you can think of exposures broader, more naturalistically, which may have larger impact on real life, and you can design to implicitly target core distortions too.

• Wear a blindfold so the place or activity is a surprise (uncertainty tolerance).• Go on a “mind rampage” (TAF/magical thinking).• Play the “do it wrong” game (perfectionism).• “It’s all my fault” (inflated sense of responsibility).• Go out for a walk and talk about something non-preferred

(disambiguation.)• ERP yoga.

SUDS – To use or not to use?

• Subjective – what does this mean for someone who is different-minded.• Units – why have “rating pressure?”• Distress – Uh … no.• Scale – habituation model here questionable?

• But we have to be flexible, some kids will benefit from the structure.

Questions, questions

• Try not to.• Use statements that move the process forward.• Get out of the “why past” into the “why future.”• ABC – always be coping.• If you must ask questions, closed end, limiting response choices

preferable.

What could go wrong doing exposures with a kid (and family) with ASD• You think you’re asking the kid to dip one toe into the pool, and they freak

out.

• Threats and Aggression.• Suicidality.• Begging parent to rescue them.• Getting you off track, in the guise of coming into their world.• Accusations.• Legal complications.• An injury or unfortunate situation out in public (e.g. jumping into a lake).• Be advised, not everyone is a fan of what we do.

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“Arnie”

• Soon after referral for depression, arrested for child pornography on computer, in early 20’s.• Determined to have ASD, hoarding (no prior diagnosis).• Convicted as an SO.• Where is he now?

CBT + Applied Behavioral Analysis (ABA) when

• There is minimal or no follow-through at home.• OCD treatment impossible due to aggression.• There is self-injurious behavior.• To help generalize treatment to other professionals, settings.• There are skill deficits, like in ADL’s which are confounds and barriers

to OCD treatment.• More hours are needed for skill acquisition, and behavior reduction.

“Lisa”

• Age 5, OCD-like Sx, needed a lot of adaptive support, would scream very loudly, for very long periods of time, for example, if a bow in her hair wasn’t placed perfectly. Severe communication problems.• The screaming was very hard to deal with , so understandably,

parents, and everyone else, just gave in.

• Jason, age 9, was showering for hours, but also did not have washing and shampooing skills.• Rosa, age 11, perfectionistic about how food is served, but also

texture, color aversions

Evidence for CBT effectiveness in treating OCD in ASD youth

• Kose, Fox & Storch (2018) analyzed CBT effectiveness of CBT in 11 studies - 3 randomized controlled trials, 1 case controlled study, 2 single subject experimental designs, and 5 case studies (one study included adults). 170 total participants, all HFASD (> 69 IQ); The number of CBT sessions ranged from 6 to 17.4 sessions over 9 to 21 weeks, with each session lasting from 35 minutes to 2 hours.

• All these studies indicated at least some gains in treatment gains. Studies highly heterogenous in procedures, therapy modifications, and outcome measures.• “In all studies, a multicomponent CBT treatment was implemented,” the authors

wrote. “The components of CBT typically involved mapping, cognitive restructuring, fear hierarchy development, [exposure and response prevention], and relapse prevention.” Two studies used emotional literacy education.

• Currently, CBT is at least somewhat effective, Kose et al noted, when “enhanced with modifications such as increased structure in the sessions, visual aids and cues, and considerable parental involvement.” (Quote from Halle, 2018.)

All studies analyzed by Kose, Fox & Storch (2018) used at least 1 and up to 8 of the following 10 modifications, from the 5 most common as listed:

• Parental involvement.• Increased use of visuals.• Incorporation of child interests.• Personalized treatment metaphors and coping statements.• Self-monitoring.• Nonverbal and concrete examples.• Positive reinforcement.• Use of clear language and instructions.• Functional Behavioral Assessment & Intervention (FBAI).• Narratives.

Reach out – no one of us has all the answers

• Teachers• Grandparents• Other parents on similar situations• Specialized camps• Community resources & activities• Advocacy groups/OCD (and ASD) conferences• Colleagues

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If you have a team, great. If not, try not to go it alone/there are options for severe and complex cases• Psychiatrist, Pediatrician, Neurologist, Gastro etc.• Applied Behavioral Analysis (ABA)/Behavior Techs

• Behavior Reduction (Extinction, Replacement behaviors)• Generalization to home, other settings

• Speech and Language Therapy• Dietician/Nutritionist• Occupational & Physical Therapy• Life coaches• Intensive Outpatient (with or without residential housing)• Residential• Wilderness Programs

What does it take to be a good OCD therapist for youth with ASD?• Art + Science

• Idealism & Pragmatism

• Hope and Reality

• PATIENCE to work on the same things over and over

• Empathy

• High tolerance for not knowing exactly what to do (a lot)

• And the courage to admit it

• Increasing your knowledge about the spectrum

• Curiosity

• Good setback recovery skills

• Colleagues to talk it over with

• Staying healthy yourself – this is stressful work!

• Don’t get down! It’s very easy to capitulate to frustration, blaming the parents, yourself, the “system,” wanting to avoid the case

Conclusion

• Let’s remember diagnosing and treating OCD in youth with ASD is a relatively new area.• Research is emerging, but there’s a long way to go.• We in the OCD community can take an important role in furthering

interest and work in this area.• Especially addressing OCD-related issues in those with ASD needing

high level of support; designing measures specifically geared for assessing OCD in ASD• Passion for this work and curiosity go a long way!• And now, a plug for IOCDF’s OCD/ASD SIG!

ReferencesChasson, G. S., Timpano, K. R., Greenberg, J. L., Shaw, A., Singer, T., & Wilhelm, S. (2011). Shared social competence impairment: another link between the obsessive-compulsive and autism spectrums? Clinical Psychology Review, 31(4), 653–62. doi:10.1016/j.cpr.2011.02.006 Falkmer, T., Anderson, K, Falkmer, M., & Horlin, C. (2013). Diagnostic procedures in autism spectrum disorders: a systematic literature review. Eur Child Adolesc Psychiatry,22(6):329- 40. doi: 10.1007/s00787-013-0375-0Farrell, L.J., James, S.C., Maddox, B.B., Griffiths, D., & White, S. (2016). Treatment of Comorbid Obsessive-Compulsive Disorder in Youth with ASD: The Case of Max. In Clinical Handbook of Obsessive-Compulsive and Related Disorders, a Case-Based Approach to Treating Pediatric and Adult Populations (Storch, E.A., Lewin, A.B. Eds.) Springer, New York.Flessner, C. A., Sapyta, J., Garcia, A., Freeman, J. B., Franklin, M. E., Foa, E., & March, J. (2009). Examining the Psychometric Properties of the Family Accommodation Scale-Parent-Report (FAS-PR). Journal of psychopathology and behavioral assessment, 31(1), 38–46.

References cont.Halle. T. (2018). Comorbid Autism Spectrum Disorder and OCD: Challenges in diagnosis and Treatment. https://www.psychiatryadvisor.com/home/topics/autism-spectrum-disorders/comorbid-autism-spectrum-disorder-and-ocd-challenges-in-diagnosis-and-treatment/Jiujias, M., Kelly, E., & Hall, L. (2017). Restricted, Repetitive Behaviors in Autism Spectrum Disorder and Obsessive-Compulsive Disorder: A Comparative Review. Child Psychiatry Hum Dev. , 48(6). 944-959. doi: 10.1007/s10578-017-0717-0Kose, L.K., Fox L., Storch E.A. Effectiveness of cognitive behavioral therapy for individuals with autism spectrum disorders and comorbid obsessive-compulsive disorder: a review of the research. J Dev Phys Disabil. 2018;30:69-87.Lebowitz, E. R., Panza, K. E., & Bloch, M. H. (2016). Family accommodation in obsessive-compulsive and anxiety disorders: a five-year update. Expert review of neurotherapeutics, 16(1), 45–53. doi:10.1586/14737175.2016.1126181Postorino V., Kerns C.M., Vivanti G., Bradshaw J., Siracusano. M., Mazzone. L. (2017). Anxiety disorders and obsessive-compulsive disorder in individuals with autism spectrum disorder. Curr Psychiatry; 19:92.

References cont.Scahill, L., Dimitropoulos, A., McDougle, C. J., Aman, M. G., Feurer, I. D., McCracken, J. T., … Vitiello, B. (2014). Children's Yale-Brown obsessive compulsive scale in autism spectrum disorder: component structure and correlates of symptom checklist. Journal of the American Academy of Child and Adolescent Psychiatry, 53(1), 97–107.e1. doi:10.1016/j.jaac.2013.09.018

Wikramanayake, W.N.M., Mandy, W., Shahper, S., Kaur, S., Kolli, S., Osman, S., Reid, J., Jefferies-Sewell, K., & Fineberg, N.A. (2018). Autism spectrum disorders in adult outpatients with obsessive compulsive disorder in the UK. International Journal of Psychiatry in Clinical Practice, 22(1), 54-62. doi: 10.1080/13651501.2017.1354029