“Don’t Promise Something You can’t Deliver:” Caregivers’ Advice for Improving Services to Adolescents and Young Adults with Autism

Table 1

Characteristics of family caregivers and youth with ASD (N = 174).

	n or M	% or (SD)	Range
Family Caregiver Characteristics
Age, M (SD)	54.2	(6.8)	35–72
Female	159	91.4%
Race/Ethnicity
White	139	79.9%
Black	26	14.9%
Other (Hispanic, multiracial, or other)	9	5.2%
Married	122	70.1%
Employed (full-time or part-time)	120	69.0%
4-year college degree or higher	105	60.4%
Annual household income
<$40,000	33	18.9%
$40,000 to $74,999	42	24.1%
$75,000 to $99,999	22	12.6%
$100,000 to $150,000	40	23.0%
$150,000 or more	37	21.3%
Lives in large, central urban county	120	69.0%
Characteristics of Youth with ASD
Age, M (SD)	20.9	(3.7)	16–30
Male	125	71.8%
Lives with caregiver	142	81.6%
Primary diagnosis
Autism	119	68.4%
Asperger’s	27	15.5%
Other (other, multiple, or unknown)	28	16.1%
Comorbid mental health disorder	106	60.9%
Comorbid intellectual disability	47	27.0%
School and work status
In high/secondary school	71	40.8%
In college or vocational school	22	12.6%
Out of school, working full-time or part-time	49	28.2%
Out of school, not working	32	18.4%
Level of support needed^a
None or infrequent	30	17.2%
Intermittent	67	38.5%
Limited, but consistent	32	18.4%
Frequent and close	28	16.1%
Extensive or continuous	17	9.8%
Has Medicaid coverage	100	57.5%
Has Medicaid waiver for services	59	33.9%

^aindex based on the scales for independent living-revised short form [25].