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Quality of Life Outcomes of Autistic Adults, Including Those with Multiple Disabilities, and the Benefits of Person-Centered Supports

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Title: Quality of Life Outcomes of Autistic Adults, Including Those with Multiple Disabilities, and the Benefits of Person-Centered Supports
Language: English
Authors: Carli Friedman (ORCID 0000-0002-7150-4041)
Source: Journal of Developmental and Physical Disabilities. 2025 37(2):239-258.
Availability: Springer. Available from: Springer Nature. One New York Plaza, Suite 4600, New York, NY 10004. Tel: 800-777-4643; Tel: 212-460-1500; Fax: 212-460-1700; e-mail: customerservice@springernature.com; Web site: https://link.springer.com/
Peer Reviewed: Y
Page Count: 20
Publication Date: 2025
Document Type: Journal Articles
Reports - Research
Descriptors: Adults, Autism Spectrum Disorders, Quality of Life, Evidence Based Practice, Multi Tiered Systems of Support, Comorbidity, Individualized Programs, Individual Needs
DOI: 10.1007/s10882-024-10002-8
ISSN: 1056-263X
1573-3580
Abstract: Examining the quality of life outcomes and supports of autistic people, particularly without proxies, is important to inform research and service delivery -- not only for it to be more evidenced-based, but also to ensure services and supports are successfully supporting autistic people in ways that are important to them. The aim of this exploratory study was to examine the quality of life personal outcomes of autistic people; our secondary aim was to examine the presence of person-centered organizational supports to facilitate autistic people's outcomes. We analyzed secondary Personal Outcome Measures interview data from 860 autistic adults (January 1, 2018 and December 31, 2023), many of which also had additional intellectual/developmental disabilities. Autistic people had 50.4% of outcomes present; they were most likely to be safe and have the best possible health, and least likely to choose where and with whom to live, and choose their services. Autistic people had 52.1% of individualized supports in place. While there were differences in autistic people's outcomes and supports based on their sociodemographics, the presence of supports played a larger role in quality of life. While much work remains, our findings indicate that with thoughtful, person-centered services and supports, autistic people's outcomes improve tremendously.
Abstractor: As Provided
Entry Date: 2025
Accession Number: EJ1462992
Database: ERIC
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  Value: <anid>AN0183815044;jdp01apr.25;2025Mar20.05:44;v2.2.500</anid> <title id="AN0183815044-1">Quality of Life Outcomes of Autistic Adults, Including Those with Multiple Disabilities, and the Benefits of Person-Centered Supports </title> <p>Examining the quality of life outcomes and supports of autistic people, particularly without proxies, is important to inform research and service delivery – not only for it to be more evidenced-based, but also to ensure services and supports are successfully supporting autistic people in ways that are important to them. The aim of this exploratory study was to examine the quality of life personal outcomes of autistic people; our secondary aim was to examine the presence of person-centered organizational supports to facilitate autistic people's outcomes. We analyzed secondary Personal Outcome Measures interview data from 860 autistic adults (January 1, 2018 and December 31, 2023), many of which also had additional intellectual/developmental disabilities. Autistic people had 50.4% of outcomes present; they were most likely to be safe and have the best possible health, and least likely to choose where and with whom to live, and choose their services. Autistic people had 52.1% of individualized supports in place. While there were differences in autistic people's outcomes and supports based on their sociodemographics, the presence of supports played a larger role in quality of life. While much work remains, our findings indicate that with thoughtful, person-centered services and supports, autistic people's outcomes improve tremendously.</p> <p>Keywords: Autism; Quality of life; Personal outcomes; Patient-reported outcomes; Services and supports; Human services; Medical and Health Sciences Public Health and Health Services</p> <p>Copyright comment Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.</p> <hd id="AN0183815044-2">Introduction</hd> <p>Quality of life includes physical and emotional well-being, material well-being, social well-being, social inclusion, self-determination, and rights (Schalock, [<reflink idref="bib36" id="ref1">36</reflink>]). Measuring quality of life not only provides valuable information about autistic people's experiences but can also help inform person-centered services and supports, and measure the applicability and quality of those services and supports (Arias et al., [<reflink idref="bib2" id="ref2">2</reflink>]; Schalock et al., [<reflink idref="bib37" id="ref3">37</reflink>]). In fact, Kober and Eggleton ([<reflink idref="bib25" id="ref4">25</reflink>]) suggest, "It is only through the use of consumer-focused outcome measures that an agency or program can truly understand the value of the services being provided to individuals" (p. 41).</p> <p>Despite the value and importance of quality of life outcomes, significantly more research about autism has focused on diagnosis, biology, and functioning than quality of life (Bradshaw et al., [<reflink idref="bib5" id="ref5">5</reflink>]; Ishler et al., [<reflink idref="bib22" id="ref6">22</reflink>]). Moreover, the majority of research is about autistic children, rather than adults (Kim, [<reflink idref="bib24" id="ref7">24</reflink>]; Mason et al., [<reflink idref="bib30" id="ref8">30</reflink>]; Ruggieri et al., [<reflink idref="bib35" id="ref9">35</reflink>]; Shattuck et al., [<reflink idref="bib38" id="ref10">38</reflink>]). Most of this research has also been proxy research conducted with others in autistic people's lives, instead of autistic people (Chiang & Wineman, [<reflink idref="bib11" id="ref11">11</reflink>]; Kamio et al., [<reflink idref="bib23" id="ref12">23</reflink>]; Kim, [<reflink idref="bib24" id="ref13">24</reflink>]; Moss et al., [<reflink idref="bib32" id="ref14">32</reflink>]). Yet, there are large discrepancies between self-report and proxy research about autistic people (Chiang & Wineman, [<reflink idref="bib11" id="ref15">11</reflink>]; Kamio et al., [<reflink idref="bib23" id="ref16">23</reflink>]; Kim, [<reflink idref="bib24" id="ref17">24</reflink>]; Moss et al., [<reflink idref="bib32" id="ref18">32</reflink>]).</p> <p>Not only do caregivers and other proxies have different views on autistic people, but they may also have different priorities. In fact, every person prioritizes what is important to them differently related to quality of life (Caron et al., [<reflink idref="bib8" id="ref19">8</reflink>]; Chapman & Carel, [<reflink idref="bib9" id="ref20">9</reflink>]). For example, a lack of interest in socialization should not automatically be taken as lowering someone's quality of life if that is what the person wants (McConachie et al., [<reflink idref="bib31" id="ref21">31</reflink>]). Moreover, all of our priorities change as we learn and grow, and as our wants and needs evolve (Kim, [<reflink idref="bib24" id="ref22">24</reflink>]). This is why measuring personal outcomes, which are person-centered quality of life outcomes as reported by the person, is important.</p> <hd id="AN0183815044-3">Outcomes and Supports</hd> <p>Among the quality of life research that exists, research indicates autistic people have lower quality of life than nondisabled people (Arias et al., [<reflink idref="bib2" id="ref23">2</reflink>]; Braden et al., [<reflink idref="bib4" id="ref24">4</reflink>]; Charlton et al., [<reflink idref="bib10" id="ref25">10</reflink>]; Kim, [<reflink idref="bib24" id="ref26">24</reflink>]; Lawson et al., [<reflink idref="bib28" id="ref27">28</reflink>]). Much of this research has specifically focused on how impairment causes this differential in quality of life. A number of these studies (e.g., Chiang & Wineman, [<reflink idref="bib11" id="ref28">11</reflink>]; Kamio et al., [<reflink idref="bib23" id="ref29">23</reflink>]; Kuhlthau et al., [<reflink idref="bib27" id="ref30">27</reflink>]) even go so far as to frame non-autistic people as the "healthy" control; the (false) assumption undergirding this research is autistic people are not and cannot be healthy – that they are less than (Chapman & Carel, [<reflink idref="bib9" id="ref31">9</reflink>]). Moreover, while there is a large impairment focus, research also suggests that IQ and intellectual disability do not necessarily impact or hinder the quality of life of autistic people (Charlton et al., [<reflink idref="bib10" id="ref32">10</reflink>]; Chiang & Wineman, [<reflink idref="bib11" id="ref33">11</reflink>]; Kuhlthau et al., [<reflink idref="bib27" id="ref34">27</reflink>]).</p> <p>Despite the focus on impairment, quality of life as a concept, as well as its causes, are multidimensional, highly influenced by individual, environmental, organizational, and systemic factors (Schalock, [<reflink idref="bib36" id="ref35">36</reflink>]). Bascom and Wallace ([<reflink idref="bib3" id="ref36">3</reflink>]) note,...there is a critical need for a distinction between a lack of adaptive skills, the absence of appropriate supports such as accommodations and formal services, and general unmet needs. As a result, we can't tease out whether poor outcomes are due to impairments, a lack of support, a combination of the two or something else entirely. (n.p.)</p> <p>Indeed, organizational services and supports can play a significant role in promoting or hindering autistic people's quality of life outcomes (Burke et al., [<reflink idref="bib6" id="ref37">6</reflink>]; Moss et al., [<reflink idref="bib32" id="ref38">32</reflink>]). High quality, person-centered supports can significantly improve autistic people's quality of life (Burke et al., [<reflink idref="bib6" id="ref39">6</reflink>]; Kamio et al., [<reflink idref="bib23" id="ref40">23</reflink>]; Moss et al., [<reflink idref="bib32" id="ref41">32</reflink>]; Shea et al., [<reflink idref="bib39" id="ref42">39</reflink>]). Alternatively, unmet needs for services and supports negatively impacts autistic people's outcomes (Drahota et al., [<reflink idref="bib14" id="ref43">14</reflink>]; Shea et al., [<reflink idref="bib39" id="ref44">39</reflink>]). Unfortunately, most autistic people have unmet support needs, and the need for services and supports will likely continue to grow (Dudley et al., [<reflink idref="bib15" id="ref45">15</reflink>]; Ishler et al., [<reflink idref="bib22" id="ref46">22</reflink>]; Shea et al., [<reflink idref="bib39" id="ref47">39</reflink>]; Turcotte et al., [<reflink idref="bib43" id="ref48">43</reflink>]).</p> <hd id="AN0183815044-4">Purpose</hd> <p>Examining the quality of life outcomes and supports of autistic people, particularly personal outcomes without proxies, is important to help inform research and service delivery not only for it to be more evidenced-based, but also to ensure services and supports are successfully supporting autistic people in ways that are important to them (Dudley et al., [<reflink idref="bib15" id="ref49">15</reflink>]; Kober & Eggleton, [<reflink idref="bib25" id="ref50">25</reflink>]). For these reasons, the aim of this exploratory study was to examine the quality of life personal outcomes of autistic people. Our secondary aim was to examine the presence of person-centered supports to facilitate autistic people's outcomes. We had the following research questions:</p> <p></p> <ulist> <item> Which outcomes do autistic people have present most and least?</item> <p></p> <item> How do autistic people's outcomes differ by their sociodemographics?</item> <p></p> <item> Which supports do autistic people have in place most and least?</item> <p></p> <item> How do autistic people's supports differ by their sociodemographics?</item> <p></p> <item> What is the relationship between autistic people's outcomes and supports?</item> </ulist> <p>To examine these research questions, we analyzed secondary Personal Outcome Measures (POM) interview data from 860 autistic adults.</p> <hd id="AN0183815044-5">Materials and Methods</hd> <p></p> <hd id="AN0183815044-6">Data and Participants</hd> <p>This study was a secondary data analysis of data originally collected between January 1, 2018 and December 31, 2023. (As it was secondary data, our Institutional Review Board at University of Illinois at Chicago determined it was exempt from review.) The data were originally collected by human service organizations (e.g., residential services, employment/day services, mental and behavioral health, support coordination, etc.) and state/local governments as part of their person-centered planning and/or quality management efforts. Identifiers were removed and the data was transferred to the research team. The sample included a total of 860 autistic people. The data came from the United States (<emph>n</emph> = 851), Canada (<emph>n</emph> = 6), and Ireland (<emph>n</emph> = 3).</p> <p>About three-quarters of our participants (76.3%) were between 18 and 44 years old (Table 1). Most participants were men (76.1%), white (73.3%), and primarily communicated through verbal/spoken language (74.6%). In addition to being autistic, many participants had additional disabilities/diagnoses; the most common were 'other' intellectual/developmental disability (66.4%), anxiety disorder (25.0%), behavior 'challenges' (20.0%), and mood disorder (11.0%). About half of participants had full/plenary guardianship (48.7%). In terms of average hours of support people received a day, the most common was 24/7 around the clock (51.1%). About one-third of participants (31.3%) had comprehensive behavior support needs (i.e., 24-h supervision for risk of harm to self/others), and 8.1% had complex medical support needs (i.e., 12 + hours of nursing care). The most common residence type was provider-owned/operated home (e.g., group home; 50.6%) and people lived with an average of 3.7 housemates. In terms of work/day activities, 62.6% of people participated in community day programs, 55.5% in segregated day programs, and fewer in other types. Slightly less than half (48.1%) of POM interviews were conducted during the COVID-19 pandemic.</p> <p>Table 1 Sociodemographics (<emph>n</emph> = <emph>860</emph>)</p> <p> <ephtml> <table frame="hsides" rules="groups"><thead><tr><th align="left"><p>Characteristic</p></th><th align="left"><p><italic>n</italic></p></th><th align="left"><p>%</p></th></tr></thead><tbody><tr><td align="left" colspan="3"><p>Age (<italic>n</italic> = 820)</p></td></tr><tr><td align="left"><p> 18 to 24</p></td><td align="left"><p>193</p></td><td char="." align="char"><p>23.5%</p></td></tr><tr><td align="left"><p> 25 to 34</p></td><td align="left"><p>287</p></td><td char="." align="char"><p>35.0%</p></td></tr><tr><td align="left"><p> 35 to 44</p></td><td align="left"><p>146</p></td><td char="." align="char"><p>17.8%</p></td></tr><tr><td align="left"><p> 45 to 54</p></td><td align="left"><p>96</p></td><td char="." align="char"><p>11.7%</p></td></tr><tr><td align="left"><p> 55 to 64</p></td><td align="left"><p>62</p></td><td char="." align="char"><p>7.6%</p></td></tr><tr><td align="left"><p> 65 + </p></td><td align="left"><p>32</p></td><td char="." align="char"><p>3.9%</p></td></tr><tr><td align="left" colspan="3"><p>Gender (<italic>n</italic> = 842)</p></td></tr><tr><td align="left"><p> Man</p></td><td align="left"><p>643</p></td><td char="." align="char"><p>76.1%</p></td></tr><tr><td align="left"><p> Woman</p></td><td align="left"><p>199</p></td><td char="." align="char"><p>23.6%</p></td></tr><tr><td align="left" colspan="3"><p>Race (<italic>n</italic> = 848)</p></td></tr><tr><td align="left"><p> White only</p></td><td align="left"><p>622</p></td><td char="." align="char"><p>73.3%</p></td></tr><tr><td align="left"><p> Black only</p></td><td align="left"><p>157</p></td><td char="." align="char"><p>18.5%</p></td></tr><tr><td align="left"><p> Latiné only</p></td><td align="left"><p>34</p></td><td char="." align="char"><p>4.0%</p></td></tr><tr><td align="left"><p> Other or multiracial</p></td><td align="left"><p>35</p></td><td char="." align="char"><p>4.1%</p></td></tr><tr><td align="left" colspan="3"><p>Additional disabilities/diagnoses*</p></td></tr><tr><td align="left"><p> Other intellectual/developmental disability</p></td><td align="left"><p>572</p></td><td char="." align="char"><p>66.5%</p></td></tr><tr><td align="left"><p> Anxiety disorder</p></td><td align="left"><p>215</p></td><td char="." align="char"><p>25.0%</p></td></tr><tr><td align="left"><p> Behavior challenges</p></td><td align="left"><p>172</p></td><td char="." align="char"><p>20.0%</p></td></tr><tr><td align="left"><p> Mood disorder</p></td><td align="left"><p>95</p></td><td char="." align="char"><p>11.0%</p></td></tr><tr><td align="left"><p> Seizure disorder/neurological problems</p></td><td align="left"><p>92</p></td><td char="." align="char"><p>10.7%</p></td></tr><tr><td align="left"><p> Impulse-control disorder</p></td><td align="left"><p>89</p></td><td char="." align="char"><p>10.3%</p></td></tr><tr><td align="left"><p> Other psychiatric disability</p></td><td align="left"><p>82</p></td><td char="." align="char"><p>9.5%</p></td></tr><tr><td align="left"><p> Obesity</p></td><td align="left"><p>34</p></td><td char="." align="char"><p>4.0%</p></td></tr><tr><td align="left"><p> Personality/psychotic disorder</p></td><td align="left"><p>33</p></td><td char="." align="char"><p>3.8%</p></td></tr><tr><td align="left"><p> Limited or no vision: legally blind</p></td><td align="left"><p>31</p></td><td char="." align="char"><p>3.6%</p></td></tr><tr><td align="left"><p> Cerebral palsy</p></td><td align="left"><p>24</p></td><td char="." align="char"><p>2.8%</p></td></tr><tr><td align="left"><p> Hearing loss: severe or profound</p></td><td align="left"><p>23</p></td><td char="." align="char"><p>2.7%</p></td></tr><tr><td align="left"><p> Other disabilities</p></td><td align="left"><p>17</p></td><td char="." align="char"><p>2.0%</p></td></tr><tr><td align="left" colspan="3"><p>Primary communication method (<italic>n</italic> = 848)</p></td></tr><tr><td align="left"><p> Verbal/spoken language</p></td><td align="left"><p>633</p></td><td char="." align="char"><p>74.6%</p></td></tr><tr><td align="left"><p> Facial/body expression</p></td><td align="left"><p>182</p></td><td char="." align="char"><p>21.5%</p></td></tr><tr><td align="left"><p> Other</p></td><td align="left"><p>33</p></td><td char="." align="char"><p>3.9%</p></td></tr><tr><td align="left" colspan="3"><p>Decision-making authority (<italic>n</italic> = 846)</p></td></tr><tr><td align="left"><p> Independent decision-making</p></td><td align="left"><p>155</p></td><td char="." align="char"><p>18.3%</p></td></tr><tr><td align="left"><p> Assisted decision-making</p></td><td align="left"><p>265</p></td><td char="." align="char"><p>31.3%</p></td></tr><tr><td align="left"><p> Full/plenary guardianship</p></td><td align="left"><p>412</p></td><td char="." align="char"><p>48.7%</p></td></tr><tr><td align="left"><p> Other</p></td><td align="left"><p>14</p></td><td char="." align="char"><p>1.7%</p></td></tr><tr><td align="left" colspan="3"><p>Average hours of support (<italic>n</italic> = 781)</p></td></tr><tr><td align="left"><p> On call (supports as needed)</p></td><td align="left"><p>22</p></td><td char="." align="char"><p>2.8%</p></td></tr><tr><td align="left"><p> 0–3 h/day</p></td><td align="left"><p>70</p></td><td char="." align="char"><p>9.0%</p></td></tr><tr><td align="left"><p> 3–6 h/day</p></td><td align="left"><p>87</p></td><td char="." align="char"><p>11.1%</p></td></tr><tr><td align="left"><p> 6–12 h/day</p></td><td align="left"><p>101</p></td><td char="." align="char"><p>12.9%</p></td></tr><tr><td align="left"><p> 12–23 h/day</p></td><td align="left"><p>74</p></td><td char="." align="char"><p>9.5%</p></td></tr><tr><td align="left"><p> 24/7 (around the clock)</p></td><td align="left"><p>399</p></td><td char="." align="char"><p>51.1%</p></td></tr><tr><td align="left"><p> Other</p></td><td align="left"><p>28</p></td><td char="." align="char"><p>3.6%</p></td></tr><tr><td align="left" colspan="3"><p>Complex medical support needs (<italic>n</italic> = 750)</p></td></tr><tr><td align="left"><p> No</p></td><td align="left"><p>689</p></td><td char="." align="char"><p>91.9%</p></td></tr><tr><td align="left"><p> Yes</p></td><td align="left"><p>61</p></td><td char="." align="char"><p>8.1%</p></td></tr><tr><td align="left" colspan="3"><p>Comprehensive behavior support needs (<italic>n</italic> = 750)</p></td></tr><tr><td align="left"><p> No</p></td><td align="left"><p>515</p></td><td char="." align="char"><p>68.7%</p></td></tr><tr><td align="left"><p> Yes</p></td><td align="left"><p>235</p></td><td char="." align="char"><p>31.3%</p></td></tr><tr><td align="left" colspan="3"><p>Residence type (<italic>n</italic> = 849)</p></td></tr><tr><td align="left"><p> Provider owned/operated home</p></td><td align="left"><p>430</p></td><td char="." align="char"><p>50.6%</p></td></tr><tr><td align="left"><p> Family home</p></td><td align="left"><p>265</p></td><td char="." align="char"><p>31.2%</p></td></tr><tr><td align="left"><p> Own home</p></td><td align="left"><p>85</p></td><td char="." align="char"><p>10.0%</p></td></tr><tr><td align="left"><p> Host family / family foster care</p></td><td align="left"><p>25</p></td><td char="." align="char"><p>2.9%</p></td></tr><tr><td align="left"><p> ICFDD</p></td><td align="left"><p>17</p></td><td char="." align="char"><p>2.0%</p></td></tr><tr><td align="left"><p> Other</p></td><td align="left"><p>27</p></td><td char="." align="char"><p>3.2%</p></td></tr><tr><td align="left"><p> Total housemates (<italic>M</italic> [<italic>SD</italic>])</p></td><td align="left" colspan="2"><p>3.7 (2.1)</p></td></tr><tr><td align="left" colspan="3"><p>Work/day activities* (<italic>n</italic> = 707)</p></td></tr><tr><td align="left"><p> Community day program</p></td><td align="left"><p>447</p></td><td char="." align="char"><p>62.6%</p></td></tr><tr><td align="left"><p> Segregated day program</p></td><td align="left"><p>385</p></td><td char="." align="char"><p>55.5%</p></td></tr><tr><td align="left"><p> Supported community employment</p></td><td align="left"><p>94</p></td><td char="." align="char"><p>13.5%</p></td></tr><tr><td align="left"><p> Competitive employment</p></td><td align="left"><p>92</p></td><td char="." align="char"><p>13.2%</p></td></tr><tr><td align="left"><p> Education</p></td><td align="left"><p>67</p></td><td char="." align="char"><p>9.5%</p></td></tr><tr><td align="left"><p> Sheltered work</p></td><td align="left"><p>36</p></td><td char="." align="char"><p>5.2%</p></td></tr><tr><td align="left"><p> Enclave work</p></td><td align="left"><p>23</p></td><td char="." align="char"><p>3.3%</p></td></tr><tr><td align="left" colspan="3"><p>Interview during COVID-19 pandemic</p></td></tr><tr><td align="left"><p> No</p></td><td align="left"><p>446</p></td><td char="." align="char"><p>51.9%</p></td></tr><tr><td align="left"><p> Yes</p></td><td align="left"><p>414</p></td><td char="." align="char"><p>48.1%</p></td></tr></tbody></table> </ephtml> </p> <p> <sups>*</sups>= could fall into more than one subcategory</p> <hd id="AN0183815044-7">Measure and Variables</hd> <p>Our data came from the POM, a validated, person-centered quality of life measure (Friedman, [<reflink idref="bib17" id="ref51">17</reflink>]; The Council on Quality and Leadership, [<reflink idref="bib41" id="ref52">41</reflink>]). The POM was originally developed in the 1990s by conducting focus groups with disabled people and their families about what really mattered in their lives. Over time it has evolved in response to pilot testing, Delphi surveys, literature reviews, feedback from advisory groups, reviews by content experts, and revalidations. Moreover, to be certified as reliable, interviewers must pass interrater reliability tests with expert reviewers with scores of 85% or higher (in addition to other coaching, training, and continuing education requirements).</p> <p>The most recent version includes 21 quality of life areas, called indicators: people are safe; people are free from abuse and neglect; people have the best possible health; people experience continuity and security; people exercise rights; people are treated fairly (i.e., due process); people are respected; people use their environments; people live in integrated environments; people interact with other members of the community; people participate in community life; people remain connected to natural support networks; people have friends; people have intimate relationships; people decide when to share personal information; people perform social roles; people choose where and with whom to live; people choose where to work; people choose services; people choose personal goals; and, people realize personal goals. For each of these 21 indicators, the POM examines not only if each outcome is present (<reflink idref="bib1" id="ref53">1</reflink>) or not (0), but also if people are receiving person-centered organizational supports (yes [<reflink idref="bib1" id="ref54">1</reflink>] or no [0]) to help facilitate the corresponding outcome.</p> <p>POM administration occurs in three stages. First, a certified, reliable interviewer interviews the autistic person, following guided, open-ended prompts about each of the 21 outcomes and supports. Next, the interviewer speaks to someone who knows the autistic person well and knows about the supports they receive (e.g., support staff); they ask this person about the provision of organizational supports. The interviewer may also conduct observations or record reviews if more information is needed. Finally, the interviewer uses all of the information gathered to complete decision-trees to determine if each of the 21 outcomes are present, and if each of the 21 supports are in place (see The Council on Quality and Leadership ([<reflink idref="bib41" id="ref55">41</reflink>]) for decision-trees). The 21 outcomes are then aggregated (summed) to represent each person's total quality of life outcomes, and the 21 supports are aggregated (summed) to represent how many total organizational supports the person has in place. The individual outcomes and supports as well as the total outcomes and supports served as variables for this study.</p> <hd id="AN0183815044-8">Analyses</hd> <p>For our first research question, we used descriptive statistics to analyze the presence of each of the 21 outcome areas as well as people's total outcomes. For our second research question, we ran a negative binomial model with total outcomes serving as the dependent variable (DV) and participants' sociodemographics serving as the independent variables (IVs). For our third research question, we analyzed each of the 21 supports and total supports using descriptive statistics. For our fourth research question, we conducted a negative binomial model with total supports serving as the DV and people's sociodemographics serving as the IVs. For our fifth research question, we utilized a negative binomial model with total outcomes serving as the DV, total supports as the IV, and participant's sociodemographics as the covariates (CVs). Confidence intervals (CIs) for incident rate ratios (IRR) were set at 95%.</p> <hd id="AN0183815044-9">Results</hd> <p></p> <hd id="AN0183815044-10">Outcomes</hd> <p>Autistic people had an average of 10.6 (<emph>SD</emph> = 5.03) out of 21 outcomes present (50.4%; range 0–21, Mdn = 11.00). Autistic people had the following outcomes present most often: people are safe (82.0%); people have the best possible health (69.3%); people use their environments (69.2%); and people realize personal goals (62.2%; Table 2). Meanwhile, autistic people had the following outcomes present least often: people choose where and with whom to live (29.0%); people choose services (29.3%); people have friends (34.6%); and people choose where to work (36.6%).</p> <p>Table 2 Quality of life outcomes and supports</p> <p> <ephtml> <table frame="hsides" rules="groups"><thead><tr><th align="left" rowspan="2"><p>Indicator</p></th><th align="left" colspan="2"><p>Outcome present</p></th><th align="left" colspan="2"><p>Support in place</p></th></tr><tr><th align="left"><p>%</p></th><th align="left"><p><italic>n</italic></p></th><th align="left"><p>%</p></th><th align="left"><p><italic>n</italic></p></th></tr></thead><tbody><tr><td align="left"><p>People are safe</p></td><td char="." align="char"><p>82.0%</p></td><td align="left"><p>705</p></td><td char="." align="char"><p>85.0%</p></td><td align="left"><p>731</p></td></tr><tr><td align="left"><p>People are free from abuse and neglect</p></td><td char="." align="char"><p>56.2%</p></td><td align="left"><p>483</p></td><td char="." align="char"><p>65.9%</p></td><td align="left"><p>567</p></td></tr><tr><td align="left"><p>People have the best possible health</p></td><td char="." align="char"><p>69.3%</p></td><td align="left"><p>596</p></td><td char="." align="char"><p>70.2%</p></td><td align="left"><p>604</p></td></tr><tr><td align="left"><p>People experience continuity and security</p></td><td char="." align="char"><p>48.4%</p></td><td align="left"><p>416</p></td><td char="." align="char"><p>62.6%</p></td><td align="left"><p>538</p></td></tr><tr><td align="left"><p>People exercise rights</p></td><td char="." align="char"><p>53.1%</p></td><td align="left"><p>455</p></td><td char="." align="char"><p>51.9%</p></td><td align="left"><p>446</p></td></tr><tr><td align="left"><p>People are treated fairly</p></td><td char="." align="char"><p>57.9%</p></td><td align="left"><p>497</p></td><td char="." align="char"><p>57.4%</p></td><td align="left"><p>493</p></td></tr><tr><td align="left"><p>People are respected</p></td><td char="." align="char"><p>57.2%</p></td><td align="left"><p>492</p></td><td char="." align="char"><p>60.0%</p></td><td align="left"><p>516</p></td></tr><tr><td align="left"><p>People use their environments</p></td><td char="." align="char"><p>69.2%</p></td><td align="left"><p>594</p></td><td char="." align="char"><p>70.1%</p></td><td align="left"><p>602</p></td></tr><tr><td align="left"><p>People live in integrated environments</p></td><td char="." align="char"><p>50.9%</p></td><td align="left"><p>437</p></td><td char="." align="char"><p>47.1%</p></td><td align="left"><p>405</p></td></tr><tr><td align="left"><p>People interact with other members of the community</p></td><td char="." align="char"><p>49.8%</p></td><td align="left"><p>427</p></td><td char="." align="char"><p>51.2%</p></td><td align="left"><p>439</p></td></tr><tr><td align="left"><p>People participate in the life of the community</p></td><td char="." align="char"><p>40.4%</p></td><td align="left"><p>347</p></td><td char="." align="char"><p>49.2%</p></td><td align="left"><p>423</p></td></tr><tr><td align="left"><p>People are connected to natural support networks</p></td><td char="." align="char"><p>51.5%</p></td><td align="left"><p>443</p></td><td char="." align="char"><p>65.2%</p></td><td align="left"><p>560</p></td></tr><tr><td align="left"><p>People have friends</p></td><td char="." align="char"><p>34.6%</p></td><td align="left"><p>297</p></td><td char="." align="char"><p>38.3%</p></td><td align="left"><p>329</p></td></tr><tr><td align="left"><p>People have intimate relationships</p></td><td char="." align="char"><p>37.3%</p></td><td align="left"><p>320</p></td><td char="." align="char"><p>31.9%</p></td><td align="left"><p>274</p></td></tr><tr><td align="left"><p>People decide when to share personal information</p></td><td char="." align="char"><p>54.1%</p></td><td align="left"><p>465</p></td><td char="." align="char"><p>61.9%</p></td><td align="left"><p>532</p></td></tr><tr><td align="left"><p>People perform different social roles</p></td><td char="." align="char"><p>34.7%</p></td><td align="left"><p>298</p></td><td char="." align="char"><p>32.6%</p></td><td align="left"><p>280</p></td></tr><tr><td align="left"><p>People choose where and with whom to live</p></td><td char="." align="char"><p>29.0%</p></td><td align="left"><p>249</p></td><td char="." align="char"><p>29.9%</p></td><td align="left"><p>257</p></td></tr><tr><td align="left"><p>People choose where to work</p></td><td char="." align="char"><p>36.6%</p></td><td align="left"><p>314</p></td><td char="." align="char"><p>35.2%</p></td><td align="left"><p>302</p></td></tr><tr><td align="left"><p>People choose services</p></td><td char="." align="char"><p>29.3%</p></td><td align="left"><p>252</p></td><td char="." align="char"><p>30.3%</p></td><td align="left"><p>260</p></td></tr><tr><td align="left"><p>People choose personal goals</p></td><td char="." align="char"><p>53.0%</p></td><td align="left"><p>456</p></td><td char="." align="char"><p>48.6%</p></td><td align="left"><p>418</p></td></tr><tr><td align="left"><p>People realize personal goals</p></td><td char="." align="char"><p>62.2%</p></td><td align="left"><p>535</p></td><td char="." align="char"><p>48.5%</p></td><td align="left"><p>417</p></td></tr></tbody></table> </ephtml> </p> <p>A negative binomial model revealed significant differences in total outcomes present depending on autistic people's sociodemographics, χ<sups>2</sups> (<reflink idref="bib49" id="ref56">49</reflink>) = 168.20, <emph>p</emph> < 0.001 (Table 3). Controlling for all other sociodemographics, 45 to 54 year old autistic people had a 16.16% increase in total outcomes (IRR = 1.16, <emph>p</emph> = 0.02) compared to 18 to 24 year olds. Autistic people with mood disorder had a 11.93% decrease in total outcomes (IRR = 0.88, <emph>p</emph> = 0.02) compared to autistic people without mood disorder. Autistic people with personality/psychotic disorder had a 17.84% decrease in total outcomes (IRR = 0.82, <emph>p</emph> = 0.04) compared to autistic people without personality/psychotic disorder. Autistic people with comprehensive behavior support needs had a 14.56% decrease in total outcomes (IRR = 0.85, <emph>p</emph> < 0.001) compared to autistic people without these support needs. Autistic people with supported community employment had a 11.29% increase in total outcomes (IRR = 1.11, <emph>p</emph> = 0.03) compared to autistic people without supported community employment. Autistic people with competitive employment had a 20.24% increase in total outcomes (IRR = 1.20, <emph>p</emph> < 0.001) compared to autistic people without competitive employment. Autistic people with sheltered work had a 17.06% increase in total outcomes (IRR = 1.17, <emph>p</emph> = 0.04) compared to autistic people without sheltered work. Autistic people with enclave work had a 20.38% decrease in total outcomes (IRR = 0.80, <emph>p</emph> = 0.03) compared to autistic people without enclave work. Autistic people interviewed during the COVID-19 pandemic had a 18.12% decrease in total outcomes (IRR = 0.82, <emph>p</emph> < 0.001) compared to autistic people interviewed prior to the pandemic.</p> <p>Table 3 Sociodemographic differences in outcomes and supports</p> <p> <ephtml> <table frame="hsides" rules="groups"><thead><tr><th align="left" rowspan="2"><p>Characteristic</p></th><th align="left" colspan="2"><p>Outcomes</p></th><th align="left" colspan="2"><p>Supports</p></th></tr><tr><th align="left"><p>IRR [95% CI]</p></th><th align="left"><p><italic>p</italic></p></th><th align="left"><p>IRR [95% CI]</p></th><th align="left"><p><italic>p</italic></p></th></tr></thead><tbody><tr><td align="left" colspan="5"><p>Age (ref: 18 to 24)</p></td></tr><tr><td align="left"><p> 25 to 34</p></td><td align="left"><p>1.03 [0.94, 1.14]</p></td><td align="left"><p>0.52</p></td><td align="left"><p>1.03 [0.93, 1.15]</p></td><td char="." align="char"><p>0.52</p></td></tr><tr><td align="left"><p> 35 to 44</p></td><td align="left"><p>1.11 [0.99, 1.24]</p></td><td align="left"><p>0.08</p></td><td align="left"><p>1.10 [0.97, 1.24]</p></td><td char="." align="char"><p>0.13</p></td></tr><tr><td align="left"><p> 45 to 54</p></td><td align="left"><p>1.16 [1.02, 1.32]</p></td><td align="left"><p>0.02</p></td><td align="left"><p>1.11 [0.97, 1.27]</p></td><td char="." align="char"><p>0.14</p></td></tr><tr><td align="left"><p> 55 to 64</p></td><td align="left"><p>1.12 [0.97, 1.30]</p></td><td align="left"><p>0.12</p></td><td align="left"><p>1.06 [0.90, 1.24]</p></td><td char="." align="char"><p>0.50</p></td></tr><tr><td align="left"><p> 65 + </p></td><td align="left"><p>1.10 [0.91, 1.34]</p></td><td align="left"><p>0.32</p></td><td align="left"><p>0.95 [0.77, 1.16]</p></td><td char="." align="char"><p>0.60</p></td></tr><tr><td align="left"><p>Woman (ref: man)</p></td><td align="left"><p>0.99 [0.91, 1.07]</p></td><td align="left"><p>0.79</p></td><td align="left"><p>1.01 [0.93, 1.10]</p></td><td char="." align="char"><p>0.85</p></td></tr><tr><td align="left" colspan="5"><p>Race (ref: white only)</p></td></tr><tr><td align="left"><p> Black only</p></td><td align="left"><p>0.96 [0.88, 1.05]</p></td><td align="left"><p>0.33</p></td><td align="left"><p>0.98 [0.89, 1.08]</p></td><td char="." align="char"><p>0.64</p></td></tr><tr><td align="left"><p> Latiné only</p></td><td align="left"><p>1.12 [0.94, 1.33]</p></td><td align="left"><p>0.20</p></td><td align="left"><p>1.08 [0.90, 1.30]</p></td><td char="." align="char"><p>0.40</p></td></tr><tr><td align="left"><p> Other or multiracial</p></td><td align="left"><p>0.88 [0.74, 1.05]</p></td><td align="left"><p>0.17</p></td><td align="left"><p>0.83 [0.68, 1.00]</p></td><td char="." align="char"><p>0.05</p></td></tr><tr><td align="left" colspan="5"><p>Additional disabilities/diagnoses</p></td></tr><tr><td align="left"><p> Other intellectual/developmental disability (ref: no)</p></td><td align="left"><p>1.04 [0.96, 1.14]</p></td><td align="left"><p>0.36</p></td><td align="left"><p>0.99 [0.90, 1.09]</p></td><td char="." align="char"><p>0.86</p></td></tr><tr><td align="left"><p> Anxiety disorder (ref: no)</p></td><td align="left"><p>1.08 [0.99, 1.18]</p></td><td align="left"><p>0.07</p></td><td align="left"><p>1.10 [1.00, 1.20]</p></td><td char="." align="char"><p>0.04</p></td></tr><tr><td align="left"><p> Behavior challenges (ref: no)</p></td><td align="left"><p>1.06 [0.97, 1.17]</p></td><td align="left"><p>0.21</p></td><td align="left"><p>1.02 [0.92, 1.13]</p></td><td char="." align="char"><p>0.67</p></td></tr><tr><td align="left"><p> Mood disorder (ref: no)</p></td><td align="left"><p>0.88 [0.79, 0.98]</p></td><td align="left"><p>0.02</p></td><td align="left"><p>0.90 [0.80, 1.01]</p></td><td char="." align="char"><p>0.08</p></td></tr><tr><td align="left"><p> Seizure disorder/neurological problems (ref: no)</p></td><td align="left"><p>1.05 [0.94, 1.18]</p></td><td align="left"><p>0.40</p></td><td align="left"><p>0.99 [0.88, 1.12]</p></td><td char="." align="char"><p>0.88</p></td></tr><tr><td align="left"><p> Impulse-control disorder (ref: no)</p></td><td align="left"><p>0.91 [0.81, 1.01]</p></td><td align="left"><p>0.09</p></td><td align="left"><p>1.00 [0.89, 1.12]</p></td><td char="." align="char"><p>0.94</p></td></tr><tr><td align="left"><p> Other psychiatric disability (ref: no)</p></td><td align="left"><p>0.94 [0.83, 1.06]</p></td><td align="left"><p>0.29</p></td><td align="left"><p>1.07 [0.94, 1.22]</p></td><td char="." align="char"><p>0.29</p></td></tr><tr><td align="left"><p> Obesity (ref: no)</p></td><td align="left"><p>0.85 [0.72, 1.00]</p></td><td align="left"><p>0.05</p></td><td align="left"><p>0.79 [0.66, 0.94]</p></td><td char="." align="char"><p>0.009</p></td></tr><tr><td align="left"><p> Personality/psychotic disorder (ref: no)</p></td><td align="left"><p>0.82 [0.68, 0.99]</p></td><td align="left"><p>0.04</p></td><td align="left"><p>0.89 [0.73, 1.08]</p></td><td char="." align="char"><p>0.24</p></td></tr><tr><td align="left"><p> Limited or no vision: legally blind (ref: no)</p></td><td align="left"><p>1.00 [0.83, 1.20]</p></td><td align="left"><p>0.98</p></td><td align="left"><p>1.06 [0.86, 1.29]</p></td><td char="." align="char"><p>0.60</p></td></tr><tr><td align="left"><p> Cerebral palsy (ref: no)</p></td><td align="left"><p>0.98 [0.82, 1.18]</p></td><td align="left"><p>0.86</p></td><td align="left"><p>1.14 [0.94, 1.38]</p></td><td char="." align="char"><p>0.19</p></td></tr><tr><td align="left"><p> Hearing loss: severe or profound (ref: no)</p></td><td align="left"><p>0.99 [0.82, 1.20]</p></td><td align="left"><p>0.92</p></td><td align="left"><p>0.94 [0.76, 1.16]</p></td><td char="." align="char"><p>0.56</p></td></tr><tr><td align="left"><p> Other disability (ref: no)</p></td><td align="left"><p>0.98 [0.78, 1.24]</p></td><td align="left"><p>0.88</p></td><td align="left"><p>1.00 [0.78, 1.29]</p></td><td char="." align="char"><p>1.00</p></td></tr><tr><td align="left" colspan="5"><p>Primary communication method (ref: verbal/spoken language)</p></td></tr><tr><td align="left"><p> Facial/body expression</p></td><td align="left"><p>0.94 [0.85, 1.04]</p></td><td align="left"><p>0.21</p></td><td align="left"><p>0.95 [0.85, 1.05]</p></td><td char="." align="char"><p>0.33</p></td></tr><tr><td align="left"><p> Other</p></td><td align="left"><p>0.96 [0.79, 1.18]</p></td><td align="left"><p>0.72</p></td><td align="left"><p>1.00 [0.80, 1.24]</p></td><td char="." align="char"><p>0.98</p></td></tr><tr><td align="left" colspan="5"><p>Decision-making authority (ref: independent decision-making)</p></td></tr><tr><td align="left"><p> Full/plenary guardianship</p></td><td align="left"><p>1.07 [0.97, 1.19]</p></td><td align="left"><p>0.16</p></td><td align="left"><p>1.06 [0.95, 1.18]</p></td><td char="." align="char"><p>0.31</p></td></tr><tr><td align="left"><p> Assisted decision-making</p></td><td align="left"><p>1.11 [0.99, 1.23]</p></td><td align="left"><p>0.07</p></td><td align="left"><p>1.06 [0.94, 1.19]</p></td><td char="." align="char"><p>0.34</p></td></tr><tr><td align="left"><p> Other</p></td><td align="left"><p>0.92 [0.69, 1.23]</p></td><td align="left"><p>0.57</p></td><td align="left"><p>0.93 [0.68, 1.26]</p></td><td char="." align="char"><p>0.64</p></td></tr><tr><td align="left" colspan="5"><p>Average hours of support (ref: on call)</p></td></tr><tr><td align="left"><p> 0–3 h/day</p></td><td align="left"><p>0.99 [0.80, 1.23]</p></td><td align="left"><p>0.92</p></td><td align="left"><p>0.83 [0.66, 1.04]</p></td><td char="." align="char"><p>0.10</p></td></tr><tr><td align="left"><p> 3–6 h/day</p></td><td align="left"><p>1.01 [0.81, 1.24]</p></td><td align="left"><p>0.95</p></td><td align="left"><p>0.93 [0.74, 1.17]</p></td><td char="." align="char"><p>0.54</p></td></tr><tr><td align="left"><p> 6–12 h/day</p></td><td align="left"><p>0.98 [0.79, 1.21]</p></td><td align="left"><p>0.84</p></td><td align="left"><p>0.96 [0.77, 1.21]</p></td><td char="." align="char"><p>0.75</p></td></tr><tr><td align="left"><p> 12–23 h/day</p></td><td align="left"><p>0.89 [0.70, 1.14]</p></td><td align="left"><p>0.36</p></td><td align="left"><p>0.89 [0.69, 1.15]</p></td><td char="." align="char"><p>0.38</p></td></tr><tr><td align="left"><p> 24/7 (around the clock)</p></td><td align="left"><p>0.89 [0.72, 1.09]</p></td><td align="left"><p>0.26</p></td><td align="left"><p>0.90 [0.72, 1.13]</p></td><td char="." align="char"><p>0.38</p></td></tr><tr><td align="left"><p> Other</p></td><td align="left"><p>0.85 [0.67, 1.08]</p></td><td align="left"><p>0.19</p></td><td align="left"><p>0.71 [0.55, 0.92]</p></td><td char="." align="char"><p>0.009</p></td></tr><tr><td align="left"><p>Complex medical support needs: yes (ref: no)</p></td><td align="left"><p>0.92 [0.79, 1.06]</p></td><td align="left"><p>0.24</p></td><td align="left"><p>0.91 [0.78, 1.06]</p></td><td char="." align="char"><p>0.22</p></td></tr><tr><td align="left"><p>Comprehensive behavior support needs: yes (ref: no)</p></td><td align="left"><p>0.85 [0.79, 0.93]</p></td><td align="left"><p>0.0002</p></td><td align="left"><p>0.85 [0.78, 0.93]</p></td><td char="." align="char"><p>0.0004</p></td></tr><tr><td align="left" colspan="5"><p>Residence type (provider owned/operated home)</p></td></tr><tr><td align="left"><p> Family home</p></td><td align="left"><p>1.09 [0.94, 1.26]</p></td><td align="left"><p>0.28</p></td><td align="left"><p>1.07 [0.91, 1.25]</p></td><td char="." align="char"><p>0.43</p></td></tr><tr><td align="left"><p> Own home</p></td><td align="left"><p>1.14 [1.00, 1.30]</p></td><td align="left"><p>0.05</p></td><td align="left"><p>1.09 [0.95, 1.26]</p></td><td char="." align="char"><p>0.22</p></td></tr><tr><td align="left"><p> Host family / family foster care</p></td><td align="left"><p>1.19 [0.98, 1.45]</p></td><td align="left"><p>0.08</p></td><td align="left"><p>1.18 [0.96, 1.46]</p></td><td char="." align="char"><p>0.11</p></td></tr><tr><td align="left"><p> ICFDD</p></td><td align="left"><p>0.81 [0.61, 1.09]</p></td><td align="left"><p>0.17</p></td><td align="left"><p>0.79 [0.58, 1.07]</p></td><td char="." align="char"><p>0.13</p></td></tr><tr><td align="left"><p> Other</p></td><td align="left"><p>0.88 [0.70, 1.10]</p></td><td align="left"><p>0.25</p></td><td align="left"><p>0.99 [0.78, 1.25]</p></td><td char="." align="char"><p>0.94</p></td></tr><tr><td align="left"><p> Total housemates</p></td><td align="left"><p>1.00 [0.98, 1.02]</p></td><td align="left"><p>0.75</p></td><td align="left"><p>1.00 [0.98, 1.03]</p></td><td char="." align="char"><p>0.72</p></td></tr><tr><td align="left" colspan="5"><p>Work/day activities</p></td></tr><tr><td align="left"><p> Community day program (ref: no)</p></td><td align="left"><p>1.07 [0.99, 1.15]</p></td><td align="left"><p>0.11</p></td><td align="left"><p>1.08 [0.99, 1.17]</p></td><td char="." align="char"><p>0.09</p></td></tr><tr><td align="left"><p> Segregated day program (ref: no)</p></td><td align="left"><p>0.97 [0.89, 1.05]</p></td><td align="left"><p>0.38</p></td><td align="left"><p>0.93 [0.85, 1.01]</p></td><td char="." align="char"><p>0.09</p></td></tr><tr><td align="left"><p> Supported community employment (ref: no)</p></td><td align="left"><p>1.11 [1.01, 1.23]</p></td><td align="left"><p>0.03</p></td><td align="left"><p>1.08 [0.97, 1.21]</p></td><td char="." align="char"><p>0.14</p></td></tr><tr><td align="left"><p> Competitive employment (ref: no)</p></td><td align="left"><p>1.20 [1.07, 1.35]</p></td><td align="left"><p>0.001</p></td><td align="left"><p>1.18 [1.04, 1.33]</p></td><td char="." align="char"><p>0.008</p></td></tr><tr><td align="left"><p> Education (ref: no)</p></td><td align="left"><p>1.06 [0.93, 1.22]</p></td><td align="left"><p>0.39</p></td><td align="left"><p>1.11 [0.96, 1.28]</p></td><td char="." align="char"><p>0.17</p></td></tr><tr><td align="left"><p> Sheltered work (ref: no)</p></td><td align="left"><p>1.17 [1.01, 1.36]</p></td><td align="left"><p>0.04</p></td><td align="left"><p>1.14 [0.97, 1.34]</p></td><td char="." align="char"><p>0.11</p></td></tr><tr><td align="left"><p> Enclave work (ref: no)</p></td><td align="left"><p>0.80 [0.65, 0.98]</p></td><td align="left"><p>0.03</p></td><td align="left"><p>0.92 [0.75, 1.14]</p></td><td char="." align="char"><p>0.47</p></td></tr><tr><td align="left"><p>Interview during COVID-19 pandemic: yes (ref: no)</p></td><td align="left"><p>0.82 [0.76, 0.88]</p></td><td align="left"><p> < 0.0001</p></td><td align="left"><p>0.89 [0.83, 0.96]</p></td><td char="." align="char"><p>0.002</p></td></tr></tbody></table> </ephtml> </p> <hd id="AN0183815044-11">Supports</hd> <p>Autistic people had an average of 11.0 (<emph>SD</emph> = 5.37) out of 21 individualized organizational supports in place (52.1%%; range 0–21, Mdn = 11.00). Organizations were most likely to support autistic people to be safe (85.0%), have the best possible health (70.2%), use their environments (70.1%), and be free from abuse and neglect (65.9%; Table 2). Organizations were least likely to support autistic people to choose where and with whom to live (29.9%), choose services (30.3%), have intimate relationships (31.9%), and perform different social roles (32.6%).</p> <p>A negative binomial model revealed significant differences in total organizational supports in place depending on autistic people's sociodemographics, χ<sups>2</sups> (<reflink idref="bib49" id="ref57">49</reflink>) = 113.55, <emph>p</emph> < 0.001 (Table 3). Controlling for all other sociodemographics, autistic people with anxiety disorder had a 10.01% increase in total supports (IRR = 1.10, <emph>p</emph> = 0.04) compared to autistic people without anxiety disorder. Autistic people who were fat[<reflink idref="bib1" id="ref58">1</reflink>] had a 21.21% decrease in total supports (IRR = 0.79, <emph>p</emph> = 0.009) compared to autistic people who were not fat. Compared to autistic people who received support 'on call,' people who received 'other' amounts of support had a 29.11% decrease in total supports (IRR = 0.71, <emph>p</emph> = 0.009). Autistic people who had complex behavior support needs had a 14.60% decrease in total supports (IRR = 0.85, <emph>p</emph> < 0.001) compared to autistic people without these support needs. Autistic people with competitive employment had a 17.64% increase in total supports (IRR = 1.18, <emph>p</emph> = 0.008) compared to autistic people without competitive employment. Autistic people who were interviewed during the COVID-19 pandemic had a 10.98% decrease in total supports (IRR = 0.89, <emph>p</emph> = 0.89) compared to autistic people interviewed prior to the pandemic.</p> <hd id="AN0183815044-12">The Relationship Between Outcomes and Supports</hd> <p>A negative binomial model examining the impact of total organizational supports on autistic people's total outcomes, while controlling for all sociodemographics, was significant, χ<sups>2</sups> (<reflink idref="bib50" id="ref59">50</reflink>) = 678.51, <emph>p</emph> < 0.001 (Table 4). According to the model, for every 1 additional support autistic people had in place, there was a 7.42% increase in personal outcomes present (IRR = 1.07, <emph>p</emph> < 0.001). For example, controlling for other variables, an autistic person with 5 total supports in place is expected to have 5.89 total outcomes present (23.26% of outcomes), compared to an autistic person with 15 total supports in place who is expected to have 10.00 total outcomes present (47.60% of outcomes; see Fig. 1), etc..</p> <p>Table 4 Relationships between outcomes and supports</p> <p> <ephtml> <table frame="hsides" rules="groups"><thead><tr><th align="left"><p>Variable</p></th><th align="left"><p>IRR [95% CI]</p></th><th align="left"><p><italic>p</italic></p></th></tr></thead><tbody><tr><td align="left"><p>Total supports</p></td><td align="left"><p>1.07 [1.07, 1.08]</p></td><td align="left"><p> < 0.0001</p></td></tr><tr><td align="left" colspan="3"><p>Sociodemographic controls</p></td></tr><tr><td align="left" colspan="3"><p> Age (ref: 18 to 24)</p></td></tr><tr><td align="left"><p> 25 to 34</p></td><td align="left"><p>1.00 [0.93, 1.08]</p></td><td align="left"><p>0.96</p></td></tr><tr><td align="left"><p> 35 to 44</p></td><td align="left"><p>1.02 [0.94, 1.12]</p></td><td align="left"><p>0.60</p></td></tr><tr><td align="left"><p> 45 to 54</p></td><td align="left"><p>1.06 [0.96, 1.17]</p></td><td align="left"><p>0.29</p></td></tr><tr><td align="left"><p> 55 to 64</p></td><td align="left"><p>1.08 [0.96, 1.21]</p></td><td align="left"><p>0.22</p></td></tr><tr><td align="left"><p> 65 + </p></td><td align="left"><p>1.13 [0.97, 1.32]</p></td><td align="left"><p>0.12</p></td></tr><tr><td align="left"><p> Woman (ref: man)</p></td><td align="left"><p>0.99 [0.93, 1.05]</p></td><td align="left"><p>0.67</p></td></tr><tr><td align="left" colspan="3"><p> Race (ref: white only)</p></td></tr><tr><td align="left"><p> Black only</p></td><td align="left"><p>0.98 [0.92, 1.05]</p></td><td align="left"><p>0.65</p></td></tr><tr><td align="left"><p> Latiné only</p></td><td align="left"><p>1.08 [0.95, 1.23]</p></td><td align="left"><p>0.27</p></td></tr><tr><td align="left"><p> Other or multiracial</p></td><td align="left"><p>1.02 [0.89, 1.18]</p></td><td align="left"><p>0.78</p></td></tr><tr><td align="left" colspan="3"><p> Additional disabilities/diagnoses</p></td></tr><tr><td align="left"><p> Other intellectual/developmental disability (ref: no)</p></td><td align="left"><p>1.06 [0.99, 1.14]</p></td><td align="left"><p>0.08</p></td></tr><tr><td align="left"><p> Anxiety disorder (ref: no)</p></td><td align="left"><p>1.02 [0.95, 1.09]</p></td><td align="left"><p>0.57</p></td></tr><tr><td align="left"><p> Behavior challenges (ref: no)</p></td><td align="left"><p>1.06 [0.99, 1.15]</p></td><td align="left"><p>0.10</p></td></tr><tr><td align="left"><p> Mood disorder (ref: no)</p></td><td align="left"><p>0.94 [0.86, 1.03]</p></td><td align="left"><p>0.17</p></td></tr><tr><td align="left"><p> Seizure disorder/neurological problems (ref: no)</p></td><td align="left"><p>1.04 [0.95, 1.14]</p></td><td align="left"><p>0.38</p></td></tr><tr><td align="left"><p> Impulse-control disorder (ref: no)</p></td><td align="left"><p>0.91 [0.83, 0.99]</p></td><td align="left"><p>0.03</p></td></tr><tr><td align="left"><p> Other psychiatric disability (ref: no)</p></td><td align="left"><p>0.88 [0.80, 0.97]</p></td><td align="left"><p>0.01</p></td></tr><tr><td align="left"><p> Obesity (ref: no)</p></td><td align="left"><p>1.03 [0.89, 1.17]</p></td><td align="left"><p>0.72</p></td></tr><tr><td align="left"><p> Personality/psychotic disorder (ref: no)</p></td><td align="left"><p>0.91 [0.78, 1.06]</p></td><td align="left"><p>0.24</p></td></tr><tr><td align="left"><p> Limited or no vision: legally blind (ref: no)</p></td><td align="left"><p>0.97 [0.83, 1.12]</p></td><td align="left"><p>0.65</p></td></tr><tr><td align="left"><p> Cerebral palsy (ref: no)</p></td><td align="left"><p>0.89 [0.77, 1.02]</p></td><td align="left"><p>0.10</p></td></tr><tr><td align="left"><p> Hearing loss: severe or profound (ref: no)</p></td><td align="left"><p>1.00 [0.86, 1.16]</p></td><td align="left"><p>0.98</p></td></tr><tr><td align="left"><p> Other disability (ref: no)</p></td><td align="left"><p>0.97 [0.81, 1.17]</p></td><td align="left"><p>0.76</p></td></tr><tr><td align="left" colspan="3"><p> Primary communication method (ref: verbal/spoken language)</p></td></tr><tr><td align="left"><p> Facial/body expression</p></td><td align="left"><p>0.99 [0.91, 1.07]</p></td><td align="left"><p>0.75</p></td></tr><tr><td align="left"><p> Other</p></td><td align="left"><p>0.98 [0.84, 1.15]</p></td><td align="left"><p>0.81</p></td></tr><tr><td align="left" colspan="3"><p> Decision-making authority (ref: independent decision-making)</p></td></tr><tr><td align="left"><p> Full/plenary guardianship</p></td><td align="left"><p>1.04 [0.96, 1.12]</p></td><td align="left"><p>0.39</p></td></tr><tr><td align="left"><p> Assisted decision-making</p></td><td align="left"><p>1.08 [0.99, 1.17]</p></td><td align="left"><p>0.10</p></td></tr><tr><td align="left"><p> Other</p></td><td align="left"><p>0.95 [0.75, 1.20]</p></td><td align="left"><p>0.67</p></td></tr><tr><td align="left" colspan="3"><p> Average hours of support (ref: on call)</p></td></tr><tr><td align="left"><p> 0–3 h/day</p></td><td align="left"><p>1.17 [1.00, 1.39]</p></td><td align="left"><p>0.06</p></td></tr><tr><td align="left"><p> 3–6 h/day</p></td><td align="left"><p>1.09 [0.93, 1.29]</p></td><td align="left"><p>0.28</p></td></tr><tr><td align="left"><p> 6–12 h/day</p></td><td align="left"><p>0.99 [0.84, 1.17]</p></td><td align="left"><p>0.93</p></td></tr><tr><td align="left"><p> 12–23 h/day</p></td><td align="left"><p>1.00 [0.83, 1.20]</p></td><td align="left"><p>0.98</p></td></tr><tr><td align="left"><p> 24/7 (around the clock)</p></td><td align="left"><p>0.95 [0.81, 1.13]</p></td><td align="left"><p>0.58</p></td></tr><tr><td align="left"><p> Other</p></td><td align="left"><p>1.14 [0.94, 1.37]</p></td><td align="left"><p>0.18</p></td></tr><tr><td align="left"><p> Complex medical support needs: yes (ref: no)</p></td><td align="left"><p>0.97 [0.86, 1.09]</p></td><td align="left"><p>0.59</p></td></tr><tr><td align="left"><p> Comprehensive behavior support needs: yes (ref: no)</p></td><td align="left"><p>0.95 [0.89, 1.01]</p></td><td align="left"><p>0.13</p></td></tr><tr><td align="left" colspan="3"><p> Residence type (provider owned/operated home)</p></td></tr><tr><td align="left"><p> Family home</p></td><td align="left"><p>1.03 [0.91, 1.16]</p></td><td align="left"><p>0.65</p></td></tr><tr><td align="left"><p> Own home</p></td><td align="left"><p>1.05 [0.95, 1.16]</p></td><td align="left"><p>0.37</p></td></tr><tr><td align="left"><p> Host family / family foster care</p></td><td align="left"><p>1.02 [0.88, 1.19]</p></td><td align="left"><p>0.75</p></td></tr><tr><td align="left"><p> ICFDD</p></td><td align="left"><p>0.93 [0.73, 1.18]</p></td><td align="left"><p>0.56</p></td></tr><tr><td align="left"><p> Other</p></td><td align="left"><p>0.86 [0.72, 1.02]</p></td><td align="left"><p>0.09</p></td></tr><tr><td align="left"><p> Total housemates</p></td><td align="left"><p>0.99 [0.98, 1.01]</p></td><td align="left"><p>0.49</p></td></tr><tr><td align="left" colspan="3"><p> Work/day activities</p></td></tr><tr><td align="left"><p> Community day program (ref: no)</p></td><td align="left"><p>1.02 [0.96, 1.08]</p></td><td align="left"><p>0.56</p></td></tr><tr><td align="left"><p> Segregated day program (ref: no)</p></td><td align="left"><p>1.03 [0.96, 1.09]</p></td><td align="left"><p>0.42</p></td></tr><tr><td align="left"><p> Supported community employment (ref: no)</p></td><td align="left"><p>1.01 [0.94, 1.09]</p></td><td align="left"><p>0.72</p></td></tr><tr><td align="left"><p> Competitive employment (ref: no)</p></td><td align="left"><p>1.05 [0.96, 1.14]</p></td><td align="left"><p>0.28</p></td></tr><tr><td align="left"><p> Education (ref: no)</p></td><td align="left"><p>0.98 [0.88, 1.09]</p></td><td align="left"><p>0.69</p></td></tr><tr><td align="left"><p> Sheltered work (ref: no)</p></td><td align="left"><p>1.06 [0.95, 1.19]</p></td><td align="left"><p>0.30</p></td></tr><tr><td align="left"><p> Enclave work (ref: no)</p></td><td align="left"><p>0.85 [0.72, 1.00]</p></td><td align="left"><p>0.05</p></td></tr><tr><td align="left"><p> Interview during COVID-19 pandemic: yes (ref: no)</p></td><td align="left"><p>0.89 [0.84, 0.94]</p></td><td align="left"><p> < 0.0001</p></td></tr></tbody></table> </ephtml> </p> <p>Graph: Fig. 1 The relationship between person-centered supports and quality of life outcomes. Model controls for participants' sociodemographics</p> <hd id="AN0183815044-13">Discussion</hd> <p>When we examined the quality of life of autistic people, we found autistic people had an average of only about half of the examined quality of life outcomes present. In fact, as a field, we are still doing a lot better of a job at keeping autistic people safe and healthy than we are at facilitating community integration, supporting social well-being, or promoting self-determination. For example, 82% of autistic people were safe, and 69% had the best possible health in our study. While ideally these numbers would be close to 100%, these were the most present outcomes and the areas where organizations provided the most support.</p> <p>While health and safety are important, they alone will not foster a high quality of life for autistic people. Autistic people in our study were also lacking in opportunities for self-determination and choice. Only a fraction of the autistic people in our study had choices about where they lived, where they worked, or what services they received, and these were some of the least present outcomes and supports. Self-determination plays a key role in identity, relationships, participation, and quality of life for autistic people (Kim, [<reflink idref="bib24" id="ref60">24</reflink>]). When autistic people are denied opportunities to make choices about their own lives, their quality of life is hindered. Sometimes organizations limit autistic people's choices because they believe there is a trade-off between keeping people safe and giving them choices. But research indicates when people have more control over their lives, they are more satisfied and actually have better outcomes (DeCarlo et al., [<reflink idref="bib13" id="ref61">13</reflink>]; Friedman, [<reflink idref="bib18" id="ref62">18</reflink>], [<reflink idref="bib19" id="ref63">19</reflink>]; Friedman & VanPuymbrouck, [<reflink idref="bib21" id="ref64">21</reflink>]). Instead of operating under a custodial model of care, which denies autistic people rights and choices to 'protect' them, the focus should be instead on dignity of risk, where people are supported to understand risks and make informed choices (Perske, [<reflink idref="bib34" id="ref65">34</reflink>]).</p> <p>Another area where attention is needed is relationships – ranging from friends to intimate relationships to social roles. In the POM, if the participant does not want to have social relationships, and this decision was made through informed choice, then the outcome is considered present. Therefore, our findings indicate most autistic people who did not have these relationships wanted them. It may be assumed autistic people are not interested in or capable of these relationships, which may be why only 32% of organizations supported autistic people to have intimate relationships, only 33% to have social roles, and only 38% to have friends. Yet, social relationships greatly improve autistic people's physical and mental health, and their quality of life (Braden et al., [<reflink idref="bib4" id="ref66">4</reflink>]; Charlton et al., [<reflink idref="bib10" id="ref67">10</reflink>]; Koffer Miller et al., [<reflink idref="bib26" id="ref68">26</reflink>]). Thus, it is important for organizations to not make assumptions about the interests or abilities of autistic people, as well as draw more attention to supporting people, in individualized ways, to grow and strengthen their relationships.</p> <p>While there were many other outcome areas that were present for only about half or two-thirds of people that need attention, what our findings also indicate is the important and substantial role person-centered supports can play in facilitating autistic people's quality of life. Not only was there a significant relationship between total outcomes and total supports, but also those individual outcome areas least present paralleled the presence, or lack thereof, of individualized supports for those same areas. In fact, many of the significant sociodemographic differences in outcomes dissipated once support was controlled. While these findings indicate a need for more person-centered supports in a wide variety of areas, so too do they indicate the value of those supports in promoting autistic people's quality of life. When autistic people receive individualized, person-centered supports from organizations, they have a vastly better quality of life. We believe our findings should be used to determine which areas need an influx of supports, such as related to choices, relationships, rights, and community integration.</p> <p>In addition to a need for more person-centered supports in general, our findings also indicated disparities in supports among autistic people. For example, autistic people who were 18 to 24 had decreased outcomes compared to 45 to 54 year old autistic people. This finding may be due to the impact of these youth transitioning between child and adult services. However, given the lack of significant differences for other age groups, as well as conflicting existing research finding on quality of life based on autistic people's age, we believe more research is needed to interrogate these findings and possible unexplored interactions (Braden et al., [<reflink idref="bib4" id="ref69">4</reflink>]; Charlton et al., [<reflink idref="bib10" id="ref70">10</reflink>]; Lawson et al., [<reflink idref="bib28" id="ref71">28</reflink>]; Mason et al., [<reflink idref="bib30" id="ref72">30</reflink>]; Moss et al., [<reflink idref="bib32" id="ref73">32</reflink>]).</p> <p>Autistic people who were fat received fewer receive organizational supports to promote their quality of life in our study. When we examined the data further, despite not being less likely to have the best possible health, autistic people who were fat were significantly less likely to be supported by organizations to make choices (i.e., choose where and with whom to live, choose where to work, and choose their services) and be supported to integrate into their communities (i.e., live in integrated environments, interact with other members of the community, and participate in the community). For example, only 6% of autistic people who were fat received person-centered supports to choose where and with whom they lived, compared to 31% of autistic people who were not fat. While weight is largely outside of people's control, fat people are often blamed for their weight and thought to be less motivated, lack self-control, and be noncompliant (Alberga et al., [<reflink idref="bib1" id="ref74">1</reflink>]; Daníelsdóttir et al., [<reflink idref="bib12" id="ref75">12</reflink>]). By virtue of high levels of anti-fat bias in health care fields, fat people receive lower quality care (Alberga et al., [<reflink idref="bib1" id="ref76">1</reflink>]; Tomiyama et al., [<reflink idref="bib42" id="ref77">42</reflink>]). Our findings appear to suggest anti-fat bias results in autistic people receiving less person-centered support, especially fewer opportunities for community integration and control over their own lives; this must be remedied and attitudes about fat people's supposed lack of self-control must be diminished in human services. In addition, given the lack of literature, there needs to be more research about the ways anti-fat bias may impact the quality of life of autistic people.</p> <p>Autistic people with personality/psychotic disorder and mood disorder as well as those with comprehensive behavior support needs had fewer outcomes present in our study. This finding parallels previous research which has found mental and behavior health to be associated with lower quality of life (Caron et al., [<reflink idref="bib8" id="ref78">8</reflink>]; Mason et al., [<reflink idref="bib30" id="ref79">30</reflink>]). However, it is important to note people with comprehensive behavior support needs in our study also received significantly fewer person-centered supports; this likely contributes to why this group had fewer outcomes present. For example, autistic people with anxiety disorder received more supports, which may be why they did not experience disparities in outcomes. Given these findings, intentional services and supports are needed for autistic people with mental and behavioral health disabilities to promote their quality of life.</p> <p>While past research has found unemployment, which happens at higher rates for autistic people, negatively impacts autistic people's quality of life (Koffer Miller et al., [<reflink idref="bib26" id="ref80">26</reflink>]; Lawson et al., [<reflink idref="bib28" id="ref81">28</reflink>]; Mason et al., [<reflink idref="bib30" id="ref82">30</reflink>]), in our study, being employed or participating in a day program alone was not enough to translate to a better quality of life. In fact, outcomes significantly differed depending on settings, often with those most integrated employment settings (i.e., competitive employment and supported community employment) benefiting quality of life the most, and less inclusive work, such as enclave work, negatively impacting quality of life. While day programs, whether they were segregated or integrated, did not hinder quality of life, they also did not improve it. Given these findings, it is not enough to ensure autistic people are employed, but they should be in a job of their choice, in the most integrated setting, and must not be underemployed.</p> <p>Finally, we found significant decreases in both quality of life and person-centered supports during the COVID-19 pandemic. This mirrors previous research which has found people with intellectual and developmental disabilities' (IDD's), including autistic people's, lives were adversely affected during the pandemic (Capp et al., [<reflink idref="bib7" id="ref83">7</reflink>]; Navas et al., [<reflink idref="bib33" id="ref84">33</reflink>]; Spain et al., [<reflink idref="bib40" id="ref85">40</reflink>]). For example, autistic and other neurodivergent people were more anxious, depressed, and lonelier during the pandemic (Capp et al., [<reflink idref="bib7" id="ref86">7</reflink>]). While the early waves of the pandemic, where lockdown was more prevalent, hindered people's outcomes, the impacts lingered even into 2023, despite efforts to 'return to normal' (Friedman, [<reflink idref="bib20" id="ref87">20</reflink>]). During the pandemic where people needed increased support, services and supports were disrupted and of lower quality (Friedman, [<reflink idref="bib20" id="ref88">20</reflink>]; Linehan et al., [<reflink idref="bib29" id="ref89">29</reflink>]; Navas et al., [<reflink idref="bib33" id="ref90">33</reflink>]). Given our findings about the critical role person-centered supports can play in autistic people's outcomes and quality of life, attention to the service system is needed as COVID-19 continues and beyond.</p> <hd id="AN0183815044-14">Limitations</hd> <p>When interpreting the findings from this study, several limitations should be noted. This was a secondary data analysis, and, as a result, we did not have the ability to add additional variables or ask participants follow up questions. For example, we did not have information about when or how autistic people were labeled or diagnosed. We did not have information about socioeconomic status or educational attainment in the dataset. This was not a random or representative sample. For example, most of the participants were men, white, and had additional intellectual or developmental disabilities. While we did not find having additional intellectual/developmental disabilities impacted outcomes or supports, most autistic people do not have intellectual disabilities (Arias et al., [<reflink idref="bib2" id="ref91">2</reflink>]; McConachie et al., [<reflink idref="bib31" id="ref92">31</reflink>]). Future research should further explore how having multiple disabilities, particularly intellectual disabilities, may impact autistic people's outcomes and supports.</p> <p>Research about autism, gender, and quality of life is mixed, with some studies finding men having better outcomes, some finding men have worse outcomes, and some finding no gender differences (Braden et al., [<reflink idref="bib4" id="ref93">4</reflink>]; Caron et al., [<reflink idref="bib8" id="ref94">8</reflink>]; Kamio et al., [<reflink idref="bib23" id="ref95">23</reflink>]; Kuhlthau et al., [<reflink idref="bib27" id="ref96">27</reflink>]; Lawson et al., [<reflink idref="bib28" id="ref97">28</reflink>]). As such, we believe this area would be a useful avenue for future research, especially related to supports. In addition, given there were fewer autistic Black, Indigenous, and people of color (BIPOC) in our study, as well as a lack of research about the quality of life of autistic BIPOC more broadly, future research should also focus on this intersection. Finally, all of the participants in our study were receiving at least some form of formal support from human service organizations or state/local governments; as such, they may have different experiences and outcomes than autistic people who do not receive formal services or are on waiting lists for formal services.</p> <hd id="AN0183815044-15">Conclusions</hd> <p>Personal outcomes tell us what is important to autistic people, what they value, and what they need. In human services, personal outcomes also play an important role in ensuring services and supports are not only targeted and person-centered, but also improving autistic people's quality of life. In our field more broadly, personal outcomes can also inform where more systemic and structural changes may be needed. In our study, when we examined personal outcomes, we found while most autistic people were healthy and safe, they were still commonly denied opportunities to exercise their rights, integrate into their communities, form and strengthen relationships, and make decisions about their own lives. While much work remains, our findings also indicate with thoughtful, person-centered services and supports, autistic people's outcomes improve tremendously. When we listen to autistic people about what they want and what is important to them, and support them in the ways they need, autistic people have better lives.</p> <hd id="AN0183815044-16">Acknowledgements</hd> <p>Thank you to Mary Kay Rizzolo for reviewing this manuscript and providing feedback.</p> <hd id="AN0183815044-17">Author Contribution</hd> <p>Conceptualization; Data curation; Formal analysis; Investigation; Methodology; Project administration; Resources; Software; Supervision; Validation; Visualization; Writing – original draft; Writing – review and editing.</p> <hd id="AN0183815044-18">Funding</hd> <p>This research received no specific grants from any funding agency.</p> <hd id="AN0183815044-19">Data Availability</hd> <p>The data from this study are not publicly available because this was not a component of the participation in the original data collection or our IRB.</p> <hd id="AN0183815044-20">Compliance with Ethical Standards</hd> <p></p> <hd id="AN0183815044-21">Ethics Approval</hd> <p>As this is a secondary data analysis, it was determined exempt by our IRB at University of Illinois at Chicago as it did not meet the criteria for human subjects.</p> <hd id="AN0183815044-22">Consent to Participate</hd> <p>Not applicable.</p> <hd id="AN0183815044-23">Competing Interests</hd> <p>The author has no conflicts of interest.</p> <hd id="AN0183815044-24">Publisher's Note</hd> <p>Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.</p> <ref id="AN0183815044-25"> <title> References </title> <blist> <bibl id="bib1" idref="ref53" type="bt">1</bibl> <bibtext> Alberga A, Pickering B, Alix Hayden K, Ball G, Edwards A, Jelinski S, Nutter S, Oddie S, Sharma A, Russell-Mayhew S. 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In addition, research has found the term 'obese' to be more stigmatizing than 'fat' (Vartanian, [44]).</bibtext> </blist> </ref> <aug> <p>By Carli Friedman</p> <p>Reported by Author</p> </aug> <nolink nlid="nl1" bibid="bib36" firstref="ref1"></nolink> <nolink nlid="nl2" bibid="bib37" firstref="ref3"></nolink> <nolink nlid="nl3" bibid="bib25" firstref="ref4"></nolink> <nolink nlid="nl4" bibid="bib22" firstref="ref6"></nolink> <nolink nlid="nl5" bibid="bib24" firstref="ref7"></nolink> <nolink nlid="nl6" bibid="bib30" firstref="ref8"></nolink> <nolink nlid="nl7" bibid="bib35" firstref="ref9"></nolink> <nolink nlid="nl8" bibid="bib38" firstref="ref10"></nolink> <nolink nlid="nl9" bibid="bib11" firstref="ref11"></nolink> <nolink nlid="nl10" bibid="bib23" firstref="ref12"></nolink> <nolink nlid="nl11" bibid="bib32" firstref="ref14"></nolink> <nolink nlid="nl12" bibid="bib31" firstref="ref21"></nolink> <nolink nlid="nl13" bibid="bib10" firstref="ref25"></nolink> <nolink nlid="nl14" bibid="bib28" firstref="ref27"></nolink> <nolink nlid="nl15" bibid="bib27" firstref="ref30"></nolink> <nolink nlid="nl16" bibid="bib39" firstref="ref42"></nolink> <nolink nlid="nl17" bibid="bib14" firstref="ref43"></nolink> <nolink nlid="nl18" bibid="bib15" firstref="ref45"></nolink> <nolink nlid="nl19" bibid="bib43" firstref="ref48"></nolink> <nolink nlid="nl20" bibid="bib17" firstref="ref51"></nolink> <nolink nlid="nl21" bibid="bib41" firstref="ref52"></nolink> <nolink nlid="nl22" bibid="bib49" firstref="ref56"></nolink> <nolink nlid="nl23" bibid="bib50" firstref="ref59"></nolink> <nolink nlid="nl24" bibid="bib13" firstref="ref61"></nolink> <nolink nlid="nl25" bibid="bib18" firstref="ref62"></nolink> <nolink nlid="nl26" bibid="bib19" firstref="ref63"></nolink> <nolink nlid="nl27" bibid="bib21" firstref="ref64"></nolink> <nolink nlid="nl28" bibid="bib34" firstref="ref65"></nolink> <nolink nlid="nl29" bibid="bib26" firstref="ref68"></nolink> <nolink nlid="nl30" bibid="bib12" firstref="ref75"></nolink> <nolink nlid="nl31" bibid="bib42" firstref="ref77"></nolink> <nolink nlid="nl32" bibid="bib33" firstref="ref84"></nolink> <nolink nlid="nl33" bibid="bib40" firstref="ref85"></nolink> <nolink nlid="nl34" bibid="bib20" firstref="ref87"></nolink> <nolink nlid="nl35" bibid="bib29" firstref="ref89"></nolink>
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  Data: 10.1007/s10882-024-10002-8
– Name: ISSN
  Label: ISSN
  Group: ISSN
  Data: 1056-263X<br />1573-3580
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: Examining the quality of life outcomes and supports of autistic people, particularly without proxies, is important to inform research and service delivery -- not only for it to be more evidenced-based, but also to ensure services and supports are successfully supporting autistic people in ways that are important to them. The aim of this exploratory study was to examine the quality of life personal outcomes of autistic people; our secondary aim was to examine the presence of person-centered organizational supports to facilitate autistic people's outcomes. We analyzed secondary Personal Outcome Measures interview data from 860 autistic adults (January 1, 2018 and December 31, 2023), many of which also had additional intellectual/developmental disabilities. Autistic people had 50.4% of outcomes present; they were most likely to be safe and have the best possible health, and least likely to choose where and with whom to live, and choose their services. Autistic people had 52.1% of individualized supports in place. While there were differences in autistic people's outcomes and supports based on their sociodemographics, the presence of supports played a larger role in quality of life. While much work remains, our findings indicate that with thoughtful, person-centered services and supports, autistic people's outcomes improve tremendously.
– Name: AbstractInfo
  Label: Abstractor
  Group: Ab
  Data: As Provided
– Name: DateEntry
  Label: Entry Date
  Group: Date
  Data: 2025
– Name: AN
  Label: Accession Number
  Group: ID
  Data: EJ1462992
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=eric&AN=EJ1462992
RecordInfo BibRecord:
  BibEntity:
    Identifiers:
      – Type: doi
        Value: 10.1007/s10882-024-10002-8
    Languages:
      – Text: English
    PhysicalDescription:
      Pagination:
        PageCount: 20
        StartPage: 239
    Subjects:
      – SubjectFull: Adults
        Type: general
      – SubjectFull: Autism Spectrum Disorders
        Type: general
      – SubjectFull: Quality of Life
        Type: general
      – SubjectFull: Evidence Based Practice
        Type: general
      – SubjectFull: Multi Tiered Systems of Support
        Type: general
      – SubjectFull: Comorbidity
        Type: general
      – SubjectFull: Individualized Programs
        Type: general
      – SubjectFull: Individual Needs
        Type: general
    Titles:
      – TitleFull: Quality of Life Outcomes of Autistic Adults, Including Those with Multiple Disabilities, and the Benefits of Person-Centered Supports
        Type: main
  BibRelationships:
    HasContributorRelationships:
      – PersonEntity:
          Name:
            NameFull: Carli Friedman
    IsPartOfRelationships:
      – BibEntity:
          Dates:
            – D: 01
              M: 04
              Type: published
              Y: 2025
          Identifiers:
            – Type: issn-print
              Value: 1056-263X
            – Type: issn-electronic
              Value: 1573-3580
          Numbering:
            – Type: volume
              Value: 37
            – Type: issue
              Value: 2
          Titles:
            – TitleFull: Journal of Developmental and Physical Disabilities
              Type: main
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