Factors that Assist Parents to Obtain Diagnoses of ASD for their Children by 30 Months of AgeDebra D. Barrie, Marcia N. Gragg, Sobia Ehsan, & Mariam Shamon

University of Windsor, Windsor, ON, Canada

BACKGROUND• Considerable evidence supports the feasibility of identifying children with ASD by

18 to 36 months of age.• Recent prospective studies have identified early behavioural profiles and

developmental trajectories to aid in early identification of ASD.• The combination of clinical judgment with standardized diagnostic tools has made

it possible to diagnose children with ASD reliably by 24 months of age.• Parents often become concerned about their children’s development during the

first two years of life and begin to seek answers for their concerns.• Early diagnosis allow for intensive behavioural interventions early in life that

could lead to more positive outcomes for children with ASD.• Early identification of ASD can also be beneficial to the families as it has been

found to be a key contributor to reduced parental stress.

OBJECTIVE• To explore similarities and differences between diagnostic experiences of families

who obtained diagnoses of ASD for their children before 30 months of age and families who obtained diagnoses later.

METHODSParticipants• 29 parents of children under 6 1/2 years of age with ASD.• 86% mothers, with a mean age of 33.8 years (range of age categories was 18 –

54). • 89.7% had some college education or more, higher than the median 2007 Ontario

average education level. • Median family income was $62,500 (Canadian $), lower than the median 2008

Ontario family income of $70,910.• Mean age of at diagnosis was 36.3 months for this group of children (range 20 to

61 months; 83% boys).

• 22 children had diagnoses of Autistic Disorder, 5 had diagnoses of PDD-NOS, 1

had a diagnosis of Asperger’s Disorder, and 1 had a diagnosis of ASD.

Measures • Help-Seeking Questionnaire: an original questionnaire designed for the

present research requesting information about parents’ early concerns, their diagnostic experiences, and demographic information.

• Semi-Structured Telephone Interview: 6 open-ended questions to allow parents to provide further information on their initial concerns and factors perceived as having an impact on their ability to obtain diagnoses of ASD for their children.

Procedure • Participants were recruited in person, via recruitment flyers sent through email,

and recruitment flyers posted on on-line web sites relating to ASD.• Parents were asked to complete the Help Seeking questionnaire (on paper, via

telephone, or on-line).• Semi-structured telephone interviews were completed with the 21 parents who

indicated their willingness to provide further information via telephone.• Parents were asked to provide a copy of their children’s diagnostic reports to

confirm the actual diagnoses and age of the children at diagnoses.

International Meeting for Autism Research (IMFAR), San Diego, 2011

Conflict of Interest: None

• 50% of children diagnosed at or before 30 months were referred to the diagnosing clinician by a Speech Language Pathologist compared to 23.5% of children diagnosed later.

• 16.6% of children diagnosed at or before 30 months were referred to the diagnosing clinician by a Physician or Paediatrician compared to 47% of children diagnosed later.

• See Figure 3.

CONCLUSIONS• The earlier parents become concerned about their children’s

development, the younger their children are likely to be when they receive diagnoses.

• Speech and Language Pathologists and other professional who come in contact with very young children on an ongoing basis may be in a position to influence parents toward seeking help about their concerns earlier from clinicians qualified to diagnose ASD.

• These results emphasize the importance of educating parents and community professionals about the early signs and symptoms of ASD.

• Language is an early concern for parents therefore it makes sense to have SLP know the early signs of ASD.

• Data collection is ongoing. Thank You to…

The parents and children who participated!Louanne Miron, Parent Advisor; Autism Ontario, and The Summit Centre for Preschool Children with Autism,

Windsor, ON, Canada

RESULTS

• Parents of children diagnosed with ASD at or before 30 months became concerned about development at an average of 16 months, while parents of children diagnosed later be became concerned at 25 months (t(27) = -2.97, p < .01, r = .50). See Figure 1.

• Language development was the most common initial concern. See Figure 2.

barried@uw

indsor.ca

www.uwinds

or.ca/

autism

Language Social Behaviour Medical Other0

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Figure 1. Percentage of parents' initial concerns in each area.

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Figure 3. Referring Professionals Consulted by Parents.

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Figure 1. Age at Initial Concern and Age at Diagnosis

Average Age at Initial Concern Overall Average Age at Initial Concern By Dx Group

“We saw the doctor first, but he said there was no problem. Then we went to Talk 2 Me, and they sent us to a psychologist specializing in Autism.”

“Our family doctor noticed immediately that our child was not making small talk or engaging. He referred us to a paediatrician, but he didn’t help, just said he [child] didn’t feel like talking and wait and see. We went to a new paediatrician.”

“A quick referral from a paediatrician to a proper specialist was the main factor. Our family doctor was no help. Kept saying “He’ll be fine.” We had to really pressure him for a referral.”

“Waiting…the waiting is the worst.”

“I think the biggest favour that we did for our son was getting him diagnosed early and not ignoring those early signs… he’s the amazing little kid that he is today, and I seriously think that’s because it was so early when we started his therapy, so yeah, it’s all good now.” (mother of a child diagnosed at 24 months).