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First Look: Data on Adults on the Autism Spectrum

Date Published: 
September 9, 2009

Teen with ASD holding mother's handThe Interactive Autism Network (IAN) Project, the nation's largest online autism research effort, has collected information from thousands of families with a child on the autism spectrum from across the United States. Recently, we began to invite adults with autism spectrum disorders (ASDs) to join the project, as well. In this report, we take a first look at our participating adults with ASD.

Please Note: These Findings Are Preliminary
The analyses presented here by the Interactive Autism Network are preliminary. They are based on information submitted via the Internet by adults with autism spectrum disorders (ASD) or their guardians from the United States who choose to participate. They may not generalize to the larger population of adults with ASD. The data have not been peer-reviewed -- that is, undergone evaluation by researchers expert in a particular field -- or been submitted for publication. IAN views participants as research partners, and shares such preliminary information to thank them and demonstrate the importance of their ongoing involvement.

Adults on the Autism Spectrum

Adults with autism spectrum disorders and their families began asking to take part in the IAN Project upon its launch in April 2007. We responded, developing two Adult with ASD online questionnaires, one for independent adults with ASD and one for those under guardianship. These were made available to the public in April 2009, and we are now presenting preliminary data from our first participants.

The adult community is remarkably diverse, and we wondered who might join the IAN Project even before any kind of national campaign had been conducted to actively recruit adults and their families.

Please keep in mind that our numbers are quite small at this point, and any statistics shown should not be interpreted to apply to the larger population of adults with ASD.

Independent Adults

Independent adults of all ages responded, as we show in Figure 1. Our youngest independent participating adult was 18 years old, and the oldest was 62. The mean or average age of these participants was 39 years.

Figure 1.
Pie graph showing diverse ages of adults with ASD who have responded thus far

About 60% of our independent adults were female, while 40% were male. Considering that males with ASD usually outnumber females by at least 4 or 5 to 1, 1 it appears that women with ASD may be more motivated to participate in this online research project than men. As more adults join the project, we will be curious to see if this trend continues. What might explain this?

We do know that some participating adults are also parents of children with ASD, and that these adults tend to be diagnosed only after their child is. Mothers of children with ASD participate in IAN much more often than fathers, which may help explain the unexpectedly high number of participating female adults with ASD. In addition, although some studies have shown men participate in online surveys at a higher rate than women, 2 many others show that women tend to participate at higher rates than men, 3 4 5 and that they tend to use the Internet in different ways. For example, it has been suggested that men tend to go online to seek information, while women seek to communicate, share, or build relationships.5 6 Sharing one's own information via an online research survey meant to increase knowledge and help others may be more appealing to women with ASD than it is to men with ASD. Again, it will be interesting to see if this trend continues over time.

Looking at the current ASD diagnoses of our independent adults, it was clear that the vast majority were individuals with Asperger's syndrome. More than 70% identified as having Asperger's, while only about 20% reported an autism diagnosis. (See Figure 2.)

Figure 2.
Pie chart showing that more than 70% of independent adults with ASD who have responded report a diagnosis of Asperger's

Approximately 70% reported receiving their diagnosis during adulthood (that is, at age 18 or older).

Life circumstances varied a great deal by age, as might be expected. While 65% of the 18-25 year olds were still attending school, only 12% of those 26 and over were doing so. Likewise, 93% of those 18-25 years old were living with their parents, while 56% of the 26 and over group were living with a spouse. (See Table 1.)

Table 1. Independent Adults with ASD

 

Age 18-25

Age 26 and over

Attends School

65%

12%

Has paid employment

36%

58%

Lives with parents

93%

21%

Lives with spouse

0%

56%

Of those who did not currently have paid employment, 42% said they wanted to work but couldn't find work. Likewise, 38% said they did not want to work at the moment (they might be a student or stay-at-home parent). Whatever their other reasons for not working, two-thirds said they also feared the workplace would be too challenging for them because of their ASD or other health or mental health issues.

In fact, we asked these independent adults about a number of conditions that have been reported to commonly co-occur with ASD. 7 8 9 10 Results are shown in Figure 3.

Figure 3.
Bar graph showing percentage of adults with ASD who reported diagnoses of depression or anxiety, and/or gastrointestinal complaints, sleep issues, and other health issues commonly associated with ASD

Gastrointestinal complaints, sleep issues, and allergies were all frequently reported. Most common of all were diagnoses of depression or anxiety. Considering the importance of these issues to quality of life and treatment needs, the IAN Project hopes to conduct an in-depth survey on such co-occurring or comorbid conditions in the future -- one that will be asked of all children and adults with ASD, as well as unaffected siblings registered with IAN.

Adults under Guardianship

As expected, the picture was quite different for adults with ASD who were under guardianship. (Do please keep in mind, however, that these findings are preliminary and the number of participants is still quite small.)

These adults were much younger as a group than the independent adults. Only 19% of the independent adults with ASD were 18-25 years old, while 62% of the adults under guardianship fell into that category. (See Figure 4.) More than half of the young adults in this group were still attending school of some type.

Figure 4.
Pie graph showing ages of adults with ASD as reported by legal guardians

The majority of the adults under guardianship had a current diagnosis of autism; only 14% had an Asperger's diagnosis. (See Figure 5.) As might be expected, 97% of the dependent adults had been diagnosed during their childhood years.

Figure 5.
Pie graph showing that the majority of adults with ASD who had legal guardians responding on their behalf were diagnosed with autism, rather than Asperger's

In contrast to the high number of females among participating independent adults, the gender ratio for the dependent adults was 3.6 males to 1 female, which is closer to the expected 4 or 5 to 1 ratio reported for children with ASD. Nearly all of these adults lived with a parent.

So far, only 17 guardians have reported on their child or ward's co-occurring conditions. (See Figure 6.)

Figure 6.
Bar graph showing percentage of adults with ASD whose guardians reported diagnoses of depression or anxiety, and/or gastrointestinal complaints, sleep issues, and other health issues commonly associated with ASD

*Please note: the percentages shown in Figure 6 are based on answers given by only 17 respondents, and will likely change dramatically as the number of adults with ASD under guardianship participating in the IAN Research project increases.

As with the independent adults, gastrointestinal or sleep issues and allergies were commonly reported. Attention deficit hyperactivity disorder (ADHD) was reported by a much higher percentage of the dependent adults compared to independent ones (65% vs. 29%). Perhaps this is because they were younger as a group, and so more likely to receive such a diagnosis. In contrast to the independent (and mostly female and Asperger's adults), depression and anxiety were not as frequently reported in the dependent adults with ASD.

The Missing Middle

As we have examined our data, and spoken with adults with ASD and their families, we have begun to suspect that there is one large group currently missing from participation in the IAN Research project: adults who are not under guardianship but who nevertheless need assistance understanding the project, or filling in our online questionnaires. They might be thought of as in between the very high functioning independent adults, many with Asperger's, who are currently taking our self-report questionnaire and the individuals under guardianship whose caregivers are filling out the guardian version of the questionnaire.

This represents a quandary: these individuals are legal adults, who must decide whether to consent to participate in research for themselves, yet may need help with the actual process of finding the project on the Internet, or navigating the online consent process or questionnaire forms. What role can a parent or other trusted person play if they would like to introduce the idea of participating in IAN to an adult with ASD? They can explain the project; help the adult with ASD register for the project; and make clear what each question is about to the same degree they might assist with any other web-based task, such as online banking or an online purchase. The decision to participate, however, remains with the adult with ASD. If a person with ASD who is not under guardianship says "I don't want to do this," then no is the answer.

It is our hope that clarifying this for individuals with ASD and those who care about them will enable more adults to participate in the IAN Project.

Our Next Challenge: Where to Find Them?

There is currently a great deal of interest in the needs of adults on the autism spectrum -- those living in our society now and those growing up to join them. In fact, ASD advocates have formed a national consortium called Advancing Futures for Adults with Autism (AFAA). They plan to bring together expertise to address the many complex issues involved, including housing and employment. IAN hopes to play a role, collecting information from adults to support the work of advocates, policymakers, and researchers.

Advocates who want to fight for better services and support need information from adults with ASD, such as where they are living, what benefits they are receiving, whether they are able to work if they want to, and whether they are able to get health care. What's more, after years of focusing exclusively on children, researchers are eager to learn from adults, and to include them in studies. IAN has helped connect families of children with both advocates and researchers, but there is one other major challenge as we begin to reach out to adults with ASD. They are much harder to locate than the families of children with ASD are. Where can we find them?

Parents of young children on the spectrum are especially motivated to join advocacy groups, search the web, and otherwise inhabit spaces where the IAN Project may be mentioned: autism-focused magazines, websites, and events. This is not necessarily the case for adults or their guardians.

We are still working to identify how to reach the diverse population of adults on the spectrum, from the websites, listservs, or conferences where independent adults may congregate, to support groups for adults or their families, to the organizations serving many adults. If you have ideas for us, we would be grateful for your input. Contact us at ian@kennedykrieger.org. We also have a new IAN brochure that includes information about the adult program. If you interact with adults with ASD or their families, please spread the word by ordering brochures to share.

Our sincerest thanks to the adults with ASD, and the guardians of adults with ASD, who have already taken part in our first adult-focused online survey. You are our pioneers, and your participation is greatly appreciated.

 

Related Articles

For a number of articles focused on adults with ASD, see the "Adults" section of our website.

References

  1. Newschaffer, C. J., Croen, L. A., Daniels, J., Giarelli, E., Grether, J. K., Levy, S. E., et al. (2007). The epidemiology of autism spectrum disorders. Annual Review of Public Health, 28, 235-258. View Abstract
  2. Kwak, N., & Radler, B. (2002). A comparison between mail and web surveys: Response pattern, respondent profile, and data quality. Journal of Official Statistics, 18(2), 257-257-273. View Abstract
  3. Underwood, D., Kim, H., & Matier, M. (2000). To mail or to web: Comparisons of survey response rates and respondent characteristics. (No. ED446513). Paper presented at the Annual Forum of the Association for Institutional Research (40th, Cincinnati, Ohio, May 21-24, 2000). Retrieved September 9, 2009.
  4. Sax, L. J., Gilmartin, S. K., & Bryant, A. N. (2003). Assessing response rates and nonresponse bias in web and paper surveys. Research in Higher Education, 44(4), 409-432. View Abstract
  5. Smith, W. G. (2008). Does gender influence online survey participation? A record-linkage analysis of university faculty online survey response behavior. (No. ED501717). San Jose, CA: San Jose State University. Retrieved September 9, 2009.
  6. Jackson, L. A., Ervin, K. S., Gardner, P. D., & Schmitt, N. (2001). Gender and the internet: Women communicating and men searching. Sex Roles, 44(5/6), 363-363-379. View Abstract
  7. Rosenberg, R., Kaufmann, W., Law, J. K., & Law, P. (2009). Factors associated with psychiatric co-morbidity in autism spectrum disorders. Manuscript submitted for publication.
  8. Simonoff, E., Pickles, A., Charman, T., Chandler, S., Loucas, T., & Baird, G. (2008). Psychiatric disorders in children with autism spectrum disorders: Prevalence, comorbidity, and associated factors in a population-derived sample. Journal of the American Academy of Child and Adolescent Psychiatry, 47(8), 921-929. View Abstract
  9. Hutton, J., Goode, S., Murphy, M., Le Couteur, A., & Rutter, M. (2008). New-onset psychiatric disorders in individuals with autism. Autism: The International Journal of Research and Practice, 12(4), 373-390. View Abstract
  10. Stewart, M. E., Barnard, L., Pearson, J., Hasan, R., & O'Brien, G. (2006). Presentation of depression in autism and Asperger syndrome: A review. Autism: The International Journal of Research and Practice, 10(1), 103-116. View Abstract
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