Autism Spectrum Disorder

Roger Thomas, MD, Ph.D, CCFP, MRCGP

Dr. Patrick Lee for slides on CANMEDS roles

Goals

1. Prevalence of autism2. Diagnosis: DSM-V definition3. Screening: M-CHAT4. Behavioral therapy theories 5. Behavioral therapy effectiveness6. Role of the family physician: CAN-MEDS roles

PART 1. PREVALENCE How do we know what the prevalence of autism is? Retrospective records

search in 14 US statesUS Autism and Developmental Disabilities Monitoring (ADDM)

agency for children 8 years old:

1. Educational and clinical records (diagnostic and developmental assessments from a psychologist, neurologist, developmental pediatrician, physical therapist, occupational therapist or speech/ language pathologist)

2. ICD-9 codes for childhood disabilities or psychological conditions

Search records for triggers child has ASD

• Trained technicians search for “triggers” in the report (e.g. the child does not initiate interactions with others, prefers to play alone or engage in solitary activities) and code using DSM criteria

• Inter-rater agreement on 10% sample whether a case was ASD = 90.2%

• Rate depends on which records you find. In Utah: health and education records rate = 7.5/1000 health records = 6.1/1000 education records = 3.9/1000

Rates/1000 in 8 year olds

• Males 18.4 (1 in 54)• Females 4.0 (1 in 252)• Non-Hispanic white 12• Non-Hispanic black 10.2• Hispanic children 7.9• Alabama 4.8• Utah 21.2

PART 2: Diagnosis. DSM-V criteriaDOMAIN CRITERIA

1 •Impairment in social interaction and communicationSubcriteria (impairment in all 3 required)•social and emotional reciprocity•nonverbal communication•creating and maintaining relationships

2 •Abnormal and repetitive behaviour, interests, and activitiesSubcriteria (2 of 4 required)stereotyped speech and behaviour•resistance to change•fixated interests•hypersensitivity or hyposensitivity to sensory input

3 Presentation in early childhood development

4 Limited and hindered everyday activities

Activity with a colleague: Discuss which DSM-V criteria the case of 2-year-old Joan or John meets

• only says mama and dada• No eye contact• Does not smile when others smile at her/him• Gestures toward objects she/he wants but does not

make eye contact while gesturing• Plays by her/himself• Often flaps her/his hands, loves watching spinning

objects• Always lines up her/his toys in a straight line• Only responds to her/his name after multiple

attempts if you kneel at her/his eye level

Activity with a colleague

• Assess which DSM-V criteria Joan/John meets

Sensitivity and Specificity

DISEASEPresent Absent

DIAGNOSTIC Positive a b a + bTEST RESULT Negative c d c + d

Totals a + c b + d

• Sensitivity = a/(a + c)• Specificity = d/(b + d)• Positive Predictive Value (PPD) = a/(a + b)• Negative Predictive Value (NPD) = d/(c + d)

PART 3. Screening for Autism: The 23 item M-CHAT

• Parents complete (yes/no answers) in 2 minutes• Child scored at risk if check any three items OR

Item Any 2 of these 6 critical items2 Interest in other children7 Points to show interest9 Shows objects to others

13 Imitation14 Responds to name15 Follows pointing

23 item M-CHAT at 18 monthsStudy N screened Sensitivity if

use ≥ 2 critical items

Sensitivity if use ≥ 3 anyitems

Specificity if use ≥ 2 critical items

Specificity if use ≥ 3 any items

Beuker 2014, Stenberg 2014, Norway

52,026 20.8% 34.1% 97.9% 92.7%

Study N screened

Sensitivity M-CHAT + Follow-up interview*

Specificity M-CHAT + Follow-up interview*

Robins 2013, USA

18989 88% 91%

*Ask frequency, severity, examples for at-risk items

M-CHAT + Nurse observation and interview with parent & child

M-CHAT Nurse observation Both

Positive predictive value

91.7% 92.5% 89.6%

Sensitivity 76.7% 86% 95.6%

M-CHAT Item

7 Use index finger to point at something?

14 React to own name (turn to person addressing child)?

15 Gaze at something you point at further away?

Try to establish eye contact with you?

Interact with you in pretend play (e.g. play with doll) Does child use eye contact to monitor you are watching?

Activity with a colleague

• Assess if Joan/John meets M-Chat Criteria• Apply the cutting points of ≥ 3 items and ≥ 2

critical items• How much are sensitivity and specificity

improved by: 5 question nurse interview or Follow up phone interview that focuses on

intensity of item behaviours with examples

Screening for Autism: 10 item Q-CHAT

• 432 children 4-11 years with ASD (Allison 2012)

• Diagnosis with ASD at “recognized clinic by a recognized physician or clinical psychologist using DSM-IV criteria”

• Sensitivity: 95% at cut off point of 6; 91% at cut-off of 3

• Specificity: 97% and PPV = 0.94 at cut off point of 6; 89% and PPV = 0.58 at cut-off of 3

Part 4. ThreeBehavioral therapy theories

• Increase Joint attention• Theory of Mind Training• Parent-mediated Communication-focused

treatment (PACT)

Increase Joint attention

Purpose: Increase joint attention and engagement so child shows, points and givesIntervention: Two 20-minute daily sessions, 5 days/week x 8 weeks. Each session 5 minutes training: Preschool teachers play

with child. Hide toy in a bag ”What do you have?” Teacher shows exaggerated interest in toy. Teacher joins child’s toy focus.

Increase Joint attention

15 minutes floor play: to generalise skills. Teacher follows child’s lead in play, creates play routines, talks about what child is doing, prompts and responds to joint attention

Theory of Mind Training

Purpose: The ability to attribute subjective mental states to oneself and othersIntervention: Sixteen 90 minute sessions weekly x 16 weeks, groups of 5-6 children

Precursors of Theory of Mind skills:Listening to others, making acquaintanceDifference between fantasy and realityAssess social situations

Theory of Mind TrainingPrecursors of Theory of Mind skills (contd):

Recognise others’ emotions (happiness, sadness, anger, fear)

Imagination Humour

Elementary Theory of Mind skills Placing oneself in thoughts and feelings of othersUnderstanding how others can have different ideas

about reality

Parent-mediated Communication-focused treatment (PACT)

Purpose: Child will respond to parenting which is adapted to their impairmentsIntervention: action routines, familiar repetitive language, pauses2 hours every 2 weeks x 6 months then monthly another 12 months

Part 5. Behavioral therapy effectiveness

9 appropriately powered RCTs in specialist centres with experienced therapists, low risk of

bias found: no change in Autism Diagnostic Observation

Schedule-Generic (ADOS-G) in core autism behavioursApproximately 5% improvement in about 50%

of the outcome measuresno change in the other 50% of outcomes

Part 6. Family Physician Roles: Initiate referral

• Early Childhood Developmental Team or developmental pediatrician for confirmation of Dx and assess severity level

• Sinneave Family Foundation@ Child Development Clinic in Calgary www.sinneavefoundation.org

• Sinneave will coordinate referral to:FSCD (Family Support for Children with Disability &

social worker)PUF (Program Unit Funding)STA (Society for Treatment of Autism)

Autism Society

• www.autismsocietyalberta.orgClick under regional chapters

• Northern Alberta (Edmonton)www.autismedmonton.org

• Central Alberta (Red Deer)www.autismcentralalberta.ca

• Southern Alberta (Lethbridge)

A Family Doctor’s Approach to ASD using Canadian CanMEDS-FM roles:

ProfessionalScholar

CollaboratorCommunicator

Health advocateManager

Family Medicine Expert

Professional:

• Early detection with high index of suspicion • Timely referral & ongoing follow up• Discuss as high as ~18.7% risk of ASD for

subsequent pregnancy according to latest 2011 study in Pediatrics

• Arrange for peer group support

Scholar:• Offer evidence based treatment options guided by

individual needs & available resources• 9 RCTs found no change in core autism behaviors

and minimal change in outcomes intended by Theory of Mind, Increase in Joint Attention and Parent-Mediated Communication interventions

• National Institute of Clinical Excellence conducted systematic review but no meta-analysis (110 separate interventions - few positive outcomes)

Scholar: Protect parents from expensive and untested interventions

• We found 27 websites, 10 videos, 188 books, 5 occupational or play therapy programs, 78 computer applications/games.

• Only 3 websites provided information about interventions tested by an RCT (all needed an expert therapist).

• No website used evidence-based assessment tools to assess biases in design, execution and data-analysis of the resources they advocated.

• Many including government websites contained advertisements to purchase books or other resources they had not assessed.

[Thomas RE, Maru G. J Child Adolesc Behav 2014, 3:2]

Communicator:

• Empathy & support for parents raising a child with LIFELONG special needs

• Encourage parents/siblings to view affected child as having a DIFFERENT ABILITY ratherthan DISABILITY

• Remind parents that autistic kids are often visual learners & utilize technology such as apps for I pad

• Build on strengths, work on weaknesses

Communicator: How to cope with hostile looks and comments

• Children with ASD are highly sensitive to sounds, crowds, darkness, queues, unfamiliar people and places. One mother said whenever someone turned on the hand-drier in a toilet her child went berserk with the sound.

• One mother went through 3 stages when onlookers comment: 1. You don’t know my child. How dare you judge me? How dare you bring him to the attention of your friends? 2. Ignore the starer. 3. “My son is autistic” (a plea for understanding). Another man gave explanatory cards to starers. Another made

T-shirts “I am not naughty, I am autistic”[Ryan S. “Meltdowns, surveillance and managing emotions: going out with children with autism. Health & Place 2010 868-875].

Communicator: help parents communicate with other parents

• Share experiences on www.asdfriendly.org• Swedish parents who frequently used a Swedish

parenting website site had higher self-esteem and met each other socially

• Families go through stages when an autistic child is born:1. Acquire social support from family, friends and neighbours 2. Reframe stressful events to make them more manageable 3. Seek spiritual (not necessarily religious) support. 4. Mobilise family and community help 5. Passive acceptance and avoidance of problems.

Collaborator:

• Collaborate with social worker and fill out appropriate forms for patients to obtain government funding

• Collaborate with teachers for IndividualizedProgram Plan (IPP)

• Advocate for 1 on 1 aide time in school• Collaborate with colleagues and other allied

health workers as a multidisciplinary team

Manager:• Fill out disability tax credit (FormT2201) for parents• Advise against expensive treatment with no clinical

evidence• Advise parents to apply for Guardianship before ASD

child turns 18• Financial planning with Registered Disability Savings

Plan (RDSP)• Tax Free savings Account (TFSA)• Assist patient in applying for provincial financial

support after turning 18

Health Advocate:• Advocate for access to resources• Promote physical fitness and social interaction

utilizing local resourcesIn Calgary, Alberta:1. Skiing with CADS (Canadian Association for

Disabled Skiing)2. Special Olympics3. Just Between Friends Club4. Challenger Little League-Baseball5. Swimming with Autism Society

Activity with a Colleague

• Identify as many creative ideas as you can how you can help your patients with an autistic child.

Conclusion : Family Medicine Expert:

• Treat the WHOLE FAMILY & accommodate• Preach patience & advice tips (scripts/social

stories) for family outings• Be proactive and screen for parental/sibling

burnout or depression• Continuity of care• Encourage respite & positive thinking

Vol 61: may • mai 2015 | Canadian Family Physician • Le Médecin de famille canadien 421

Clinical Review

Approach to autism spectrum disorderUsing the new DSM-V diagnostic criteria and the CanMEDS-FM framework

Patrick F. Lee MD CCFP FCFP Roger E. Thomas MD PhD CCFP MRCGP Patricia A. Lee MD

AbstractObjective To review the diagnostic criteria for autism spectrum disorder (ASD) from the Diagnostic and Statistical Manual of Mental Disorders, fifth edition (DSM-V), and to develop an approach to managing ASD using the CanMEDS–Family Medicine (CanMEDS-FM) framework.

Sources of information The DSM-V from the American Psychiatric Association, published in May 2013, provides new diagnostic criteria for ASD. The College of Family Physicians of Canada’s CanMEDS-FM framework provides a blueprint that can guide the complex management of ASD. We used data from the Centers for Disease Control and Prevention to determine the prevalence of ASD, and we used the comprehensive systematic review and meta-analysis completed by the UK National Institute for Health and Care Excellence for their guidelines on ASD to assess the evidence for more than 100 interventions.

Main message The prevalence of ASD was 1 in 88 in 2008 in the United States according to data from the Centers for Disease Control and Prevention. The ASD classification in the fourth edition of the DSM included autism, Asperger syndrome, pervasive developmental disorder, and childhood disintegrative disorder. The new DSM-V revision

incorporates all these disorders into one ASD umbrella term with different severity levels. The management of ASD is complex and requires a multidisciplinary team effort and continuity of care. The CanMEDS-FM roles provide a framework for management.

Conclusion Family physicians are the key leaders of the multidisciplinary care team for ASD, and the CanMEDS-FM framework provides a comprehensive guide to help manage a child with ASD and to help the child’s family.

The prevalence of autism spectrum disorder (ASD) in the United States has risen more than 75% in the past decade—from 1 in 150 in 2002 to 1 in 88 in 2008—according to data

from the Centers for Disease Control and Prevention (CDC).1 The CDC suggests that this increase is the result of a combination of better recognition of the disorder, improved diagnosis, and a true increase in prevalence. Only 10% of children with ASD have identifiable genetic or neurologic conditions such as frag-ile X syndrome, Down syndrome, or tuberous sclerosis. Common comorbidities include attention deficit hyperactivity disorder, obsessive-compulsive disorder, seizure, and anxiety.2

Using the new criteria for ASD from the Diagnostic and Statistical Manual of Mental Disorders, fifth edition (DSM-V),3 family physi-cians can make timely diagnoses, and they can play an important role in the management and follow-up of these children using the CanMEDS–Family Medicine (CanMEDS-FM) framework.4

CaseMrs Smith brings her 2-year-old son, John, to see you for an introductory visit. She moved into the city last year and this is her first visit. John was born at 39 weeks after an uneventful labour and delivery. His weight and height have been at the 55th to 60th percentile and his immunizations are up to date. He has

EDITOR’S KEY POINTS • The prevalence of autism spectrum disorder (ASD) has risen dramatically, and ASD is now commonly encountered by family physicians in the clinical setting.

• The new definition of ASD in the Diagnostic and Statistical Manual of Mental Disorders, fifth edition, includes 4 different domains with subcriteria for diagnosis. It further classifies ASD by levels 1 to 3 for mild, moderate, or severe illness based on the degree of support the patient requires. It uses the one umbrella term ASD and no longer uses terms such as Asperger syndrome, classic autism, or pervasive developmental disorder.

• Using the roles in the CanMEDS–Family Medicine framework—communicator, collaborator, professional, scholar, manager, health advocate, and family medicine expert—as a guide, family doctors can provide support and advocate for families combating this challenging lifelong condition.

This article is eligible for Mainpro-M1 credits. To earn credits, go to www.cfp.ca and click on the Mainpro link.

This article is eligible for Mainpro-M1 credits. To earn credits, go to www.cfp.ca and click on the Mainpro link.

This article has been peer reviewed. Can Fam Physician 2015;61:421-4

Cet article se trouve aussi en français à la page 425.

422 Canadian Family Physician • Le Médecin de famille canadien | Vol 61: may • mai 2015

Clinical Review | Approach to autism spectrum disorder

an older sister, aged 6 years, and no family history of note. Mrs Smith has had concerns about John’s devel-opment, especially after her daughter complained about his lack of interest in their playing together. She recalls that at age 2 her daughter had more social and verbal interactions. She has noticed that John seems to be in his own world more than other chil-dren his age are.

A focused history reveals more red flags: John only says mama and dada and does not make eye contact. He does not smile when others smile at him. He ges-tures toward objects he desires but does not make eye contact while gesturing. He plays by himself, often flaps his hands, loves watching spinning objects, and always lines up his toys in a straight line. The physi-cal examination shows no dysmorphic facial features consistent with fragile X syndrome or Down syndrome. John only responds to his name after multiple attempts with you kneeling at his eye level. There is no vocal-ization, no joint attention (which is normal by 8 to 10 months’ development), and no index finger pointing to attract his mother’s attention (which is normal by 14 to 16 months’ development). What are the next steps?

Sources of informationOur main sources of information included the American Psychiatric Association’s DSM-V,3 the College of Family Physicians of Canada’s CanMEDS-FM framework,4 data from the CDC,1,2 the M-CHAT (Modified Checklist for Autism in Toddlers) screening tool,5 and the UK National Institute for Health and Care Excellence (NICE) guide-line for the management of ASD.6 The NICE guideline6 is based on the most comprehensive systematic review and meta-analysis of the literature to date, and at 883 pages it is probably the longest systematic review in existence. It was conducted according to Cochrane Collaboration cri-teria and it analyzes each intervention in more than 100 forest plots. The authors preferred to treat each interven-tion separately, rather than using broader groupings, so power is lost in drawing broader conclusions.

Main messageThe previous ASD classification in the fourth edition, text revision, of the DSM included autism, Asperger syn-drome, pervasive developmental disorder (PDD), and childhood disintegrative disorder.7 The new DSM-V in 2013 incorporated autism, Asperger syndrome, PDD, and childhood disintegrative disorder under the umbrella term ASD and provided new diagnostic criteria for ASD, with 4 domains and subcriteria in domains 1 and 2 (Table 1).3 Because ASD is a spectrum with mild, moder-ate, and severe illness, there are now 3 levels of severity in the DSM-V.3 Level 1 indicates the ASD patient requires support, level 2 requires substantial support, and level 3 requires very substantial support.3

The M-CHAT is a validated screening tool for ASD with 23 yes-or-no questions (www.mchatscreen.com).5 Screening results are positive if the answer is no for any 3 of the 23 items or 2 of the 6 critical items (interest in other children, using the index finger to point, bringing objects to show parents, imitating, responding to one’s name, and using one’s eyes to follow an object across the room). A second-stage telephone follow-up to the M-CHAT can reduce false-positive results and unnecessary referral.

Assessment, investigations, and diagnosis. In John’s case, even his 6-year-old sister has noticed he shows impairment in social and emotional reciprocity, with a lack of smiling and absence of joint attention. The absence of index finger pointing shows impairment in nonverbal communication. Hence, John meets the 3 subcriteria in domain 1 for impairment in social interac-tion and communication listed in the DSM-V (Table 1).3

John is also exhibiting stereotyped behaviour (flapping his hands) and hypersensitivity to sensory input (loves watching spinning objects), so he meets 2 of the 4 subcri-teria in domain 2 for abnormal restrictive and repetitive behaviour, activities, and interests.3 Because these impair-ments are also presenting in early childhood and affecting and hindering his everyday activities, clinically John has a suspected provisional diagnosis of ASD using the DSM-V classification. A hearing test and a blood test for complete blood count and ferritin, thyroid-stimulating hormone, and thyroxine levels will be useful to rule out other causes of developmental delay, and the M-CHAT screening question-naire5 should be offered with a scheduled follow-up visit.

Management plan for ASD. You see John for follow-up, and results of both his hearing test and blood test

Table 1. Criteria for diagnosis of autism spectrum disorder from the DSM-VDoMAin CRiTERiA

1 impairment in social interaction and communicationSubcriteria (impairment in all 3 required)

• social and emotional reciprocity• nonverbal communication• creating and maintaining relationships

2 Abnormal and repetitive behaviour, interests, and activitiesSubcriteria (2 of 4 required)

• stereotyped speech and behaviour• resistance to change• fixated interests• hypersensitivity or hyposensitivity to sensory input

3 Presentation in early childhood development

4 Limited and hindered everyday activities

DSM-V—Diagnostic and Statistical Manual of Mental Disorders, 5th ed.Data from the American Psychiatric Association.3

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Approach to autism spectrum disorder | Clinical Review

are normal. His M-CHAT screening result is positive (the answer was no for 5 out of 6 critical items), so he has a provisional diagnosis of ASD. His treatment plan includes the following.

Referral to a developmental pediatrician, child psychi-atrist, or psychologist with experience in ASD to confirm the diagnosis of ASD and to determine the level of sever-ity: Arrange a referral to a developmental pediatrician. Advise Mrs Smith to contact the local chapter of the Autism Society (www.autismsocietycanada.ca) for peer group support and resources. Additional support groups for ASD include Autism Speaks (www.autismspeaks.ca).

An open discussion with John’s parents about their con-cerns and feelings after receiving the diagnosis: Review the prevalence of ASD and its multifactorial causes, both genetic and nongenetic, with the Smiths. Order genetic bloodwork, including DNA microarray and testing for the FMR1 (fragile X mental retardation 1) gene. Screen for and address other comorbidities including sleep dis-turbance and gastrointestinal problems such as consti-pation, gastroesophageal reflux, and celiac disease.

Tips for Mrs Smith: Advise Mrs Smith to hold John’s favourite snack or toy at eye level to encourage direct eye contact, and to interact and communicate before giv-ing him the snack or toy. This is a simplified version of behavioural modification with stimulus, response, and reward. Remind her that children with ASD might have difficulties processing sensory input; she must be patient and allow at least 10 seconds for a response to occur. She can also try to download smartphone or tablet appli-cations designed for children with ASD (who are fre-quently visual learners) to improve John’s communication skills (eg, www.autismspeaks.org/autism-apps).

Help for Mrs Smith to start the process of referrals: Direct Mrs Smith to a social worker and applications for govern-ment funding to access speech therapy, occupational therapy, physiotherapy, behavioural modification, and respite care.

Follow-up care. You see John for follow-up after his consultation with the developmental pediatrician. It is confirmed that he has ASD with level 2 severity, and behavioural modification therapy is recommended. Mrs Smith is devastated and her whole family feels over-whelmed. What can a family physician do to help the Smith family in this difficult situation?

A useful approach for management of ASD is to use the CanMEDS-FM framework,4 which includes the following 7 roles: communicator, collaborator, professional, scholar, manager, health advocate, and family medicine expert.

Communicator: It is essential to show empathy and support for Mrs Smith. Listen to her story and her con-cerns. Encourage her to view John as a child with a different ability to learn rather than as a child with a disability. Remind her to build on his strengths and work on his weaknesses.

Collaborator: Autism spectrum disorder is a lifelong illness. Treatment is aimed at improving communication and social interaction while reducing abnormal restrictive and repetitive behaviour, interests, and activities. There is evidence that the prognosis is better when joint atten-tion is present by age 4 and functional speech by age 5, and there is better cognitive function if IQ is greater than 70 and the patient shows interest in interacting with typi-cally developing peers.8 This requires a multidisciplinary team that might include an experienced developmental pediatrician, a psychiatrist, a speech pathologist, a phys-iotherapist, an occupational therapist, a psychologist, and a behavioural care consultant, with the family physician being the main collaborator. Work with the social worker and sign the necessary forms for Mrs Smith to apply for government funding. When John reaches school age, col-laborate with his teachers for individualized educational plans and advocate for appropriate aide time in class.

Professional: Have a high index of suspicion for early detection of ASD and provide timely referral and ongo-ing follow-up. It is important to discuss with Mrs Smith that the recurrent risk of ASD in subsequent pregnan-cies could be as high as 18.7%.9 Arrange for peer group support via local chapters of the Autism Society.

Scholar: Review the latest literature on ASD to offer evidence-based treatment options. Myers and Johnson from the American Academy of Pediatrics suggested treatment tailored to the child’s needs.10 Ospina et al reviewed 101 studies of therapies for ASD and con-cluded that clinical management should be guided by individual needs and available resources.11 The UK clini-cal guideline from NICE recommends the following:

Good communication between healthcare profession-als and children and young people with autism and their families and carers is essential. It should be sup-ported by evidence-based written information tailored to the person’s needs.6

Box 1 provides a summary of the NICE 2013 rec-ommendations relevant to searches for resources that parents might initiate.6 If Mrs Smith asks about proven interventions, the NICE systematic review provides a meta-analysis of all interventions to date.6

Manager: Offer to complete the Disability Tax Credit form (T2201) so that Mrs Smith can apply for a tax refund for John’s impairment. Remind her to apply for guardianship for John before he turns 18 years of age. In terms of financial guidance, inform Mrs Smith to help John set up a registered disability savings plan once he is 18 years old. By contributing $1500 yearly to a regis-tered disability savings plan, John could get up to $4500 from government matching grants and bonds.12

Health advocate: Advocate for physical fitness and social interaction using local resources.

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Clinical Review | Approach to autism spectrum disorder

Family medicine expert: It is important to screen for parental and sibling depression in Mrs Smith’s family. Encourage them to take advantage of respite care to avoid burnout. Maintain continuity of care for the whole family.

ConclusionAutism spectrum disorder, with its alarming rise in preva-lence, is a common condition that family physicians will encounter in the clinical setting. The new DSM-V defini-tion of ASD has 4 different domains with subcriteria for diagnosis. It uses one umbrella term of ASD with differ-ent levels of severity and no longer uses terms such as Asperger syndrome, classic autism, or PDD. By using the elements of the CanMEDS-FM framework, family doctors can provide support and advocate for families in combat-ing this challenging lifelong condition. Dr P.F. Lee is Assistant Professor of Family Medicine and Director of Student Affairs in the Faculty of Medicine at the University of Calgary in Alberta. Dr Thomas is Cochrane Collaboration Coordinator and Professor of Family Medicine in the Faculty of Medicine at the University of Calgary. Dr P.A. Lee is a second-year resident in the Emergency Medicine Residency Program at the University of Calgary.

acknowledgmentElements of this article were presented at the 51st Annual Scientific Assembly of the Ontario College of Family Physicians in Toronto, Ont, on November 30, 2013. The literature review has been updated and the article and advice have been expanded.

ContributorsAll authors contributed to the literature review and analysis, and to preparing the manuscript for submission.

Competing interestsNone declared

CorrespondenceDr Patrick F. Lee; e-mail pflee@ucalgary.ca

References1. Autism and Developmental Disabilities Monitoring Network Surveillance Year

2008 Principal Investigators; Centers for Disease Control and Prevention. Prevalence of autism spectrum disorders—Autism and Developmental Disabilities Monitoring Network, 14 sites, 2008. MMWR Surveill Summ 2012;61(3):1-19.

2. Centers for Disease Control and Prevention [website]. Data and statistics. Atlanta, GA: Centers for Disease Control and Prevention; 2012. Available from: www.cdc.gov/ncbddd/autism/data.html. Accessed 2014 Feb 13.

3. American Psychiatric Association. Diagnostic and statistical manual of mental disor-ders. 5th ed. Arlington, VA: American Psychiatric Association; 2013.

4. Working Group on Curriculum Review. CanMEDS-Family Medicine: a framework of competencies in family medicine. Mississauga, ON: College of Family Physicians of Canada; 2009. Available from: www.cfpc.ca/ProjectAssets/Templates/Resource.aspx?id=3031. Accessed 2014 Feb 17.

5. Barton ML, Dumont-Mathieu T, Fein D. Screening young children for autism spectrum disorders in primary practice. J Autism Dev Disord 2012;42(6):1165-74.

6. National Institute for Health and Care Excellence. The management and support of children and young people on the autism spectrum. Clinical guidance 170. London, UK: National Institute for Health and Care Excellence; 2013. Available from: www.nice.org.uk/guidance/cg170. Accessed 2014 Feb 13.

7. American Psychiatric Association. Diagnostic and statistical manual of mental disor-ders. 4th ed, text revision. Arlington, VA: American Psychiatric Association; 2000.

8. Gillberg C, Steffenbur S. Outcome and prognostic factors in infantile autism and similar conditions: a population-based study of 46 cases followed through puberty. J Autism Dev Disord 1987;17(2):273-87.

9. Ozonoff S, Young GS, Carter A, Messinger D, Yirmiya N, Zwaigenbaum L, et al. Recurrence risk for autism spectrum disorders: a Baby Siblings Research Consortium study. Pediatrics 2011;128(3):e488-95.

10. Myers SM, Johnson CP; American Academy of Pediatrics Council on Children with Disabilities. Management of children with autism spectrum disorders. Pediatrics 2007;120(5):1162-82. Epub 2007 Oct 29.

11. Ospina MB, Krebs Seida J, Clark B, Karkhaneh M, Hartling L, Tjosvold L, et al. Behavioural and developmental interventions for autism spectrum disorder: a clini-cal systematic review. PLoS ONE 2008;3(11):e3755. Epub 2008 Nov 18.

12. Canada Revenue Agency [website]. Registered disability savings plan (RDSP). Ottawa, ON: Canada Revenue Agency; 2015. Available from: www.cra-arc.gc.ca/tx/ndvdls/tpcs/rdsp-reei/menu-eng.html. Accessed 2015 Mar 19.

Box 1. Summary of niCE 2013 recommendations relevant to searches for resources that parents might initiate

Specific interventions for the core features of autism Psychosocial interventions

• Consider a specific social-communication intervention for the core features of autism in children and young people that includes play-based strategies with parents, carers, and teachers to increase joint attention, engagement, and reciprocal communication in the child or young person. Strategies should

-be adjusted to the child’s or young person’s developmental level;

-aim to increase the parents’, carers’, teachers’, or peers’ understanding of, and sensitivity and responsiveness to, the child’s or young person’s patterns of communication and interaction;

-include techniques of therapist modeling and video- interaction feedback; and

-include techniques to expand the child’s or young person’s communication, interactive play, and social routines.

• The intervention should be delivered by a trained professional. For preschool-aged children consider parent, carer, or teacher mediation. For school-aged children consider peer mediation.

Interventions for challenging behaviour Anticipating and preventing challenging behaviour

• Assess factors that might increase the risk of challenging behaviour in routine assessment and care planning in children and young people with autism, including

-impairments in communication that might result in difficulty understanding situations or in expressing needs and wishes;

-coexisting physical disorders, such as pain or gastrointestinal disorders;

-coexisting mental health problems, such as anxiety or depression and other neurodevelopmental conditions such as ADHD;

-the physical environment, such as lighting and noise levels;

-the social environment, including home, school, and leisure activities;

-changes to routines or personal circumstances; -developmental change, including puberty; -exploitation or abuse by others; -inadvertent reinforcement of challenging behaviour;

and -the absence of predictability and structure.

Interventions for life skills Offer children and young people with autism support in developing coping strategies and accessing community services, including developing skills to access public transport, employment, and leisure facilities.

ADHD—attention deficit hyperactivity disorder, NICE—National Institute for Health and Care Excellence.Reproduced from NICE.6

Table Randomized Controlled Trials of Treatments for Autistic Children

Study, Population

Intervention Comparison Follow-up

Positive outcomes at follow-up

Negative outcomes at follow-up

Begeer 2011

36 children 8-13 years, normal IQs-

Theory of Mind Training (perception, imitation, emotion recognition, pretence) 53 units within 16 one- hour weekly sessions

No intervention

16 weeks

More understanding of Theory of Mind**, mixed emotions*, complex emotions **

No difference self-reported empathy, parent-reported social skills

Green 2010 152 children 24 to 59 months

Parent-Mediated Communication Focused Treatment (PACT) 18 sessions of Preschool Autism Communication Trial to increase parental responsiveness + “treatment as usual”

“Treatment as usual”

13 months

More child initiations (effect size 0.41; 95% Confidence Interval 0.08 to 0.74) [an effect size of 0.41 is small]

No difference in autism symptoms (both groups improved); parental synchrony with child or shared attention

Gordon 2011 84 children 4-10 years

Picture Exchange Communication System (PECS) in class

No intervention

9 months

More spontaneous speech***

No differences for using pictures, pictures + speech or requesting objects

Kaale 2012 61 children 24-60

Play therapy 80 sessions with teacher based on Kasari’s manual

Regular Norwegian preschool programs

8 weeks

Joint attention with teacher**; joint engagement with mother**

No differences joint engagement with teacher; joint attention with mother

months Kasari 2010 38 children 21-36 months

Play therapy 24 sessions with toys with parents

No intervention

1 year More joint engagement,** less object-focused play**, more responsiveness to joint attention* , more types of play acts*

No difference in imitations of joint attention or increased diversity of symbolic play

Oosterling 2010 67 children 12-42 months

Parents trained to promote child engagement in mutual activities, joint pleasure, joint attention, imitation, functional play, language development

“care as usual” in Dutch special daycare or medical nurseries

2 years No differences in language development or clinical global improvement (both groups improved); no improvement in parenting skills

Rickards 2007, 2009 59 children 2-5 years

Specialist teacher visited home, identified child’s needs, discussed strategies, demonstrated them to parents, helped with daily living skills 12 month home intervention

Early Intervention Centre

12 months

Difference in IQ (intervention group increased from 61 to 67)***

No changes in behavior on four behavior scales

Roberts 2011 67 children

Specialist teacher home visits to help manage child’s behaviour positively, improve attention and play skills, self help (e.g. toileting) by modeling skills, constructive

80 hours at Centre with therapists and parents

40 weeks

Home based group improved social skills ** and comprehension** compared to centre based group

No differences communication, expression, development, mental health/behavior dysfunction

feedback to family, discussion of immediate issues 40 weeks parent intervention at home with 2 hour visit every 2 weeks

*** p < .001; ** p < .01; * p < .05