#low support needs

Support Needed

Types of Support

There was a clear gradient such that in almost all cases, increasing support needs indicated an increased need for support with any given task.

Across 13 unique tasks for food and drinks, the percentage of adult LSN respondents that needed or would strongly benefit from support ranged from 0% (help cleaning up) to 67% (meal planning), with an average of 28% (SD: 19%). MSN ranged from 0% (eating or drinking) to 83% (shopping), with an average of 37% (SD: 25%). HSN ranged from 18% (eating or drinking) to 89% (shopping and meal planning), with an average of 57% (SD: 19%). Additionally, 21% of LSN, 36% of MSN, and 57% of HSN needed help with every step of getting and preparing food, and 9% of LSN, 11% of MSN, and 46% of HSN needed help with every step of getting and preparing drinks.

Across 12 unique tasks for grooming and hygiene, the percentage of adult LSN respondents that needed or would strongly benefit from support ranged from 0% (washing hands and using the restroom) to 29% (cutting hair), with an average of 11% (SD: 11%). MSN ranged from 0% (using the restroom) to 61% (cutting hair), with an average of 22% (SD: 17%). HSN ranged from 32% (washing hands) to 71% (knowing what clothing to wear for the weather), with an average of 54% (SD: 14%).

Across 19 unique tasks for health and safety, the percentage of adult LSN respondents that needed or would strongly benefit from support ranged from 0% (using a medical device) to 74% (managing doctors), with an average of 31% (SD: 21%). MSN ranged from 3% (using a medical device) to 89% (managing doctors), with an average of 45% (SD: 25%). HSN ranged from 21% (not misusing drugs or alcohol) to 100% (scheduling appointments), with an average of 70% (SD: 20%).

Across 13 unique tasks for managing a home, the percentage of adult LSN respondents that needed or would strongly benefit from support ranged from 29% (dusting) to 65% (home repairs), with an average of 47% (SD: 10%). MSN ranged from 47% (putting away clutter and avoiding hoarding) to 83% (planning what to clean when), with an average of 63% (SD: 9%). HSN ranged from 39% (avoiding hoarding) to 100% (home repairs), with an average of 80% (SD: 15%).

Across 13 unique tasks for being in the community, the percentage of adult LSN respondents that needed or would strongly benefit from support ranged from 0% (not eloping) to 68% (managing unexpected situations), with an average of 24% (SD: 18%). MSN ranged from 19% (not eloping) to 75% (managing unexpected situations), with an average of 42% (SD: 19%). HSN ranged from 50% (accessing a rideshare and not eloping) to 89% (managing unexpected situations), with an average of 70% (SD: 12%).

Across 10 unique tasks for managing finances, the percentage of adult LSN respondents that needed or would strongly benefit from support ranged from 18% (understanding money) to 59% (paying taxes), with an average of 44% (SD: 12%). MSN ranged from 39% (understanding money) to 83% (getting or managing government benefits), with an average of 59% (SD: 13%). HSN ranged from 64% (not spending too much) to 96% (getting or managing government benefits and paying taxes), with an average of 83% (SD: 12%). Additionally, 53% of LSN, 50% of MSN, and 71% of HSN needed to be given money or things they can't afford.

Across 15 unique tasks for socializing, the percentage of adult LSN respondents that needed or would strongly benefit from support ranged from 12% (having a healthy marriage and raising children) to 74% (setting boundaries and saying no), with an average of 41% (SD: 19%). MSN ranged from 20% (having a health marriage) to 89% (setting boundaries and saying no), with an average of 57% (SD: 21%). HSN ranged from 7% (raising children) to 100% (setting boundaries or saying no), with an average of 72% (SD: 27%).

Across all domains, reminders would be strongly beneficial for 32-50% of LSN adult respondents; 37-78% of MSN; and 37-89% of HSN.

Across all domains, prompts would be strongly beneficial for 21-35% of LSN adult respondents; 23-64% of MSN; and 48-82% of HSN.

Across all domains, no support was needed for 0-29% of LSN adult respondents; 0-6% of MSN; and 0-4% of HSN.

Frequency

For food and drinks, the percent of adult respondents that needed or would strongly benefit from support daily or more was 30% of LSN, 67% of MSN, and 86% of HSN. The percent that needed support once a week or less was 36% of LSN, 6% of MSN, and 4% of HSN.

For hygiene and grooming, the percent of adult respondents that needed or would strongly benefit from support daily or more was 18% of LSN, 33% of MSN, and 86% of HSN. The percent that needed support once a week or less was 50% of LSN, 19% of MSN, and 4% of HSN.

For health and safety, the percent of adult respondents that needed or would strongly benefit from support daily or more was 15% of LSN, 44% of MSN, and 86% of HSN. The percent that needed support once a week or less was 56% of LSN, 44% of MSN, and 7% of HSN.

For managing a home, the percent of adult respondents that needed or would strongly benefit from support daily or more was 33% of LSN, 47% of MSN, and 80% of HSN. The percent that needed support once a week or less was 40% of LSN, 6% of MSN, and 0% of HSN.

For being in the community, the percent of adult respondents that needed or would strongly benefit from support daily or more was 3% of LSN, 28% of MSN, and 52% of HSN. The percent that needed support once a week or less was 55% of LSN, 22% of MSN, and 4% of HSN.

For managing finances, the percent of adult respondents that needed or would strongly benefit from support daily or more was 6% of LSN, 14% of MSN, and 52% of HSN. The percent that needed support once a week or less was 71% of LSN, 43% of MSN, and 22% of HSN.

For socializing, the percent of adult respondents that needed or would strongly benefit from support daily or more was 9% of LSN, 32% of MSN, and 60% of HSN. The percent that needed support once a week or less was 53% of LSN, 26% of MSN, and 12% of HSN.

Across domains, LSN were most likely to need help once a week or less (39%) or never (13%). MSN were most likely to need help daily or more (37%) or multiple times a week (26%). HSN usually needed help once a day (24%) or multiple times a day (48%).

Support Received

Types of Support

There was a clear gradient such that in almost all cases, increasing support needs indicated increased reception of support for any given task.

Across 13 unique tasks for food and drinks, the percentage of adult LSN respondents that received support ranged from 0% (understanding how to stay hydrated and not overeating or binge eating) to 40% (shopping), with an average of 13% (SD: 13%). MSN ranged from 0% (understanding how to stay hydrated and eating or drinking) to 67% (shopping), with an average of 19% (SD: 20%). HSN ranged from 7% (not overeating or binging and help eating or drinking) to 82% (shopping), with an average of 39% (SD: 20%). Additionally, 15% of LSN, 25% of MSN, and 50% of HSN received help with every step of getting and preparing food, and 6% of LSN, 6% of MSN, and 25% of HSN received help with every step of getting and preparing drinks.

Across 12 unique tasks for grooming and hygiene, the percentage of adult LSN respondents that received support ranged from 0% (most tasks) to 24% (knowing what clothing is socially appropriate to wear), with an average of 4% (SD: 8%). MSN ranged from 0% (washing hands, using the bathroom, changing into clean clothing, and wearing deodorant) to 31% (cutting hair), with an average of 8% (SD: 10%). HSN ranged from 11% (washing hands) to 54% (knowing what clothing to wear for the weather), with an average of 30% (SD: 15%).

Across 19 unique tasks for health and safety, the percentage of adult LSN respondents that received support ranged from 0% (exercising enough, not getting hurt exercising, not hurting themselves stimming, not hurting themselves sensory seeking, and using a medical device) to 30% (managing doctors and responding to emergencies), with an average of 10% (SD: 10%). MSN ranged from 0% (not getting hurt sensory seeking and using a medical device) to 53% (managing doctors), with an average of 19% (SD: 17%). HSN ranged from 14% (not misusing drugs or alcohol and not getting hurt exercising) to 82% (scheduling appointments), with an average of 43% (SD: 20%).

Across 13 unique tasks for managing a home, the percentage of adult LSN respondents that received support ranged from 3% (avoiding hoarding) to 35% (home repairs), with an average of 21% (SD: 8%). MSN ranged from 12% (avoiding hoarding) to 59% (throwing away or taking out trash), with an average of 43% (SD: 14%). HSN ranged from 18% (avoiding hoarding) to 79% (vacuuming and doing dishes), with an average of 59% (SD: 17%).

Across 13 unique tasks for being in the community, the percentage of adult LSN respondents that received support ranged from 0% (not eloping) to 32% (managing unexpected situations), with an average of 11% (SD: 10%). MSN ranged from 6% (not eloping and avoiding rude, socially inappropriate, threatening, or violent behaviors) to 53% (driving), with an average of 22% (SD: 15%). HSN ranged from 29% (accessing a rideshare) to 64% (driving), with an average of 48% (SD: 11%).

Across 10 unique tasks for managing finances, the percentage of adult LSN respondents that received support ranged from 6% (not spending too much) to 32% (paying taxes), with an average of 16% (SD: 8%). MSN ranged from 11% (not impulsively spending money) to 47% (paying bills), with an average of 27% (SD: 11%). HSN ranged from 32% (not spending too much) to 75% (banking and paying taxes), with an average of 54% (SD: 17%). Additionally, 15% of LSN, 17% of MSN, and 43% of HSN were given money or things they can't afford.

Across 15 unique tasks for socializing, the percentage of adult LSN respondents that received support ranged from 0% (dating) to 41% (setting boundaries and saying no), with an average of 12% (SD: 11%). MSN ranged from 3% (having a healthy marriage and raising children) to 34% (recognizing when someone is abusive or exploitive), with an average of 17% (SD: 10%). HSN ranged from 0% (raising children) to 59% (recognizing when someone is abusive or exploitive), with an average of 30% (SD: 18%).

Across all domains, reminders were received by 12-27% of LSN adult respondents; 24-44% of MSN; and 11-71% of HSN.

Across all domains, prompts were received by 0-15% of LSN adult respondents; 6-32% of MSN; and 19-46% of HSN.

Across all domains, no support was received by 24-56% of LSN adult respondents; 3-33% of MSN; and 4-26% of HSN.

Frequency

For food and drinks, the percent of adult respondents that received support daily or more was 12% of LSN, 29% of MSN, and 64% of HSN. The percent that received support once a week or less was 58% of LSN, 37% of MSN, and 11% of HSN.

For hygiene and grooming, the percent of adult respondents that received support daily or more was 0% of LSN, 14% of MSN, and 29% of HSN. The percent that received support once a week or less was 93% of LSN, 53% of MSN, and 46% of HSN.

For health and safety, the percent of adult respondents that received support daily or more was 6% of LSN, 17% of MSN, and 43% of HSN. The percent that received support once a week or less was 26% of LSN, 43% of MSN, and 32% of HSN.

For managing a home, the percent of adult respondents that received support daily or more was 9% of LSN, 25% of MSN, and 39% of HSN. The percent that received support once a week or less was 65% of LSN, 33% of MSN, and 25% of HSN.

For being in the community, the percent of adult respondents that received support daily or more was 3% of LSN, 11% of MSN, and 22% of HSN. The percent that received support once a week or less was 62% of LSN, 43% of MSN, and 26% of HSN.

For managing finances, the percent of adult respondents that received support daily or more was 3% of LSN, 9% of MSN, and 31% of HSN. The percent that received support once a week or less was 79% of LSN, 51% of MSN, and 38% of HSN.

For socializing, the percent of adult respondents that received support daily or more was 3% of LSN, 9% of MSN, and 19% of HSN. The percent that received support once a week or less was 76% of LSN, 47% of MSN, and 46% of HSN.

Across domains, LSN were most likely to receive help less than once a week (21%) or never (36%). The largest portion of MSN received help multiple times a week (22%), weekly (11%), or less than once a week (17%). HSN usually received help multiple times a day (20%), daily (16%), or multiple times a week (16%).

Supporters

Across all domains, LSN respondents were unlikely to get support from an occupational therapist (0%), a service animal (0.5%), neighbors, teachers, or other community members (2%), a dietician or nutritionist (3%), a peer support program (3%), professional support staff (3%), a roommate (5%), a social skills group (6%), a mental health therapist (8%), friends (12%), a partner (21%), or parents or other caregivers (36%). 37% (18-56% in specific domains) got help from no one.

Across all domains, MSN respondents were unlikely to get support from a service animal (0.5%), neighbors, teachers, or other community members (2%), a dietician or nutritionist (3%), a roommate (4%), an occupational therapist (5%), a peer support program (6%), a social skills group (9%), professional support staff (12%), a mental health therapist (12%), friends (15%), or a partner (28%). Help was common from parents or other caregivers (53%). 16% (6-28% in specific domains) got help from no one.

Across all domains, HSN respondents were unlikely to get support from a roommate (2%), a peer support program (4%), a dietician or nutritionist (7%), a mental health therapist (7%), a social skills group (7%), an occupational therapist (8%), neighbors, teachers, or other community members (8%), a service animal (11%), professional support staff (25%), friends (19%), or a partner (20%). Help was common from parents or other caregivers (71%). 9% (4-22% in specific domains) got help from no one.

What Else Helps

Across domains, 27-32% were helped by apps on the phone, tablet, or computer. LSN were the least likely to be helped by visual schedules or social stories (13% vs 19-23%). HSN were the most helped by assistive or adaptive technology (21% vs 3-10%).

For food and drinks, grocery delivery was helpful to 24-33% of respondents. Ready-made or pre-made meals were helpful to 58% of MSN and 43-47% of LSN and HSN. Meal delivery was helpful to 50% of HSN, 42% of MSN, and 35% of LSN. Overall, 26% of LSN, 21% of HSN, and 14% of MSN didn't find anything else helpful.

For hygiene and grooming, 39% of MSN and 29-32% of LSN and HSN found electric toothbrushes helpful. 21-28% found dry shampoo helpful. HSN were most helped by products made for kids (57% vs 42% MSN vs 21% LSN), hand, body, or baby wipes (61% vs 35-36%), and shoes without shoelaces (50% vs 22% MSN vs 9% LSN). Overall, 26% of LSN, 22% of MSN, and 11% of HSN didn't find anything else helpful.

For health and safety, 61% of MSN found online patient portals or medication refills helpful (vs 36-44%). LSN were the least likely to be helped by information cards or sheets about their disabilities (15% vs 33-36%). HSN were most helped by medical alert bracelets, wallet cards, or phone apps (46% vs 25% MSN and 9% LSN) and child-proofed or safety versions of products (39% vs 19% MSN and 0% LSN). Overall, 29% of LSN, 25% of HSN, and 14% of MSN didn't find anything else helpful.

For managing a home, HSN were the least likely to benefit from an in-home or in-unit washer/dryer or dishwasher (46% vs 74-75%). MSN were the most likely to benefit from cleaning technology like a Roomba (19% vs 7-12%). LSN were the least likely to benefit from using disposable plates, cups, bowls, or plasticware (18% vs 36-39%). Across groups, 9-17% benefitted from paying for cleaning services. Overall, 21% of HSN, 8% of MSN, 3% of LSN didn't find anything else helpful.

For being in the community, HSN were the most helped by disability transit (32% vs 3-11%) and by wearing something like a lanyard to indicate they have a hidden disability (43% vs 31% MSN vs 21% LSN) but the least helped by rideshares (4% vs 18-22%). LSN were the most helped by public transportation (50% vs 39% MSN vs 18% HSN) but the least helped by placing orders online or on the phone (50% vs 61-69%). Overall, 18% of HSN, 15% of LSN, and 8% of MSN didn't find anything else helpful.

For managing finances, LSN benefited the most from online banking apps or websites (82% vs 57-61%) but the least from government support or benefits (15% vs 36-43%). Across groups, 18-22% benefited from budgeting apps or other budgeting tools, 19-25% from only paying with cash or a pre-paid card, 43-47% from autopay options for bills, and 3-11% from financial literacy classes. Overall, 21% of HSN, 14% of LSN, and 11% of MSN didn't find anything else helpful.

For socializing, 81% of MSN, 68% of HSN, and 53% of LSN benefited from online text-based social opportunities. 53% of MSN (vs 39-41%) benefited from hobby-based communities or social opportunities. 21% of LSN (vs 8-14%) benefited from community groups like religious or cultural organizations, but 12% (vs 42-46%) benefited from disability social groups. 32% of HSN (vs 15-19%) benefited from books with social scripts, scenarios, or explanations of figurative language. Across groups, 15-25% benefited from video or audio-based social opportunities, and 3-11% from videos modeling social interactions. Overall, 21% of LSN, 18% of HSN, 11% of MSN didn't find anything else helpful.

Consequences of Not Getting Enough Support

Without support for food and drinks, 3% of LSN respondents would starve to death, and 22% would be unhealthy; for MSN, 3% would starve, 17% would get very sick, and 33% would be unhealthy; and for HSN, 46% would starve, 21% would get very sick, and 14% would be unhealthy. The percent of respondents that would be okay without any support was 22% for LSN, 6% for MSN, and 0% for HSN.

Without support for hygiene and grooming, 6% of LSN respondents would get sick, 6% would be very unclean, and 24% would be disheveled or smell; for MSN, 6% would get sick, 20% would be very unclean, and 23% would be disheveled or smell; and for HSN, 54% would get sick, 21% would be very unclean, and 14% would be disheveled or smell. The percent of respondents that would be okay without any support was 45% for LSN, 20% for MSN, and 4% for HSN.

Without support for health and safety, no LSN respondents would die, 9% would get very sick, and 35% would be unhealthy; for MSN, 8% would die, 28% would get very sick, and 19% would be unhealthy; and for HSN, 29% would die, 39% would get very sick, and 14% would be unhealthy. The percent of respondents that would be okay without any support was 9% for LSN, 3% for MSN, and 0% for HSN.

Without support for managing a home, no LSN respondents would be homeless, 9% would have a hazardous home, and 45% would have a very unclean home; for MSN, 17% would be homeless, 20% would have a hazardous home, and 46% would have a very unclean home; and for HSN, 39% would be homeless, 32% would have a hazardous home, and 18% would have a very unclean home. The percent of respondents that would be okay without any support was 6% for LSN and 0% for MSN and HSN.

Without support for being in the community, no LSN respondents would be unsafe, 9% wouldn't be able to access their community, and 6% would frequently get lost or have meltdowns; for MSN, 12% would be unsafe in the community, 26% wouldn't be able to access their community, and 21% would frequently get lost or have meltdowns; and for HSN, 54% would be unsafe in the community, 25% wouldn't be able to access their community, and 7% would frequently get lost or have meltdowns. The percent of respondents that would be okay without any support was 32% for LSN, 9% for MSN, and 0% for HSN.

Without support for managing finances, 9% of LSN respondents would die, be very sick, or be homeless, 15% would be in poverty, and 24% would live paycheck to paycheck; for MSN, 40% would die, be very sick, or be homeless, 11% would be in poverty, and 9% would live paycheck to paycheck; and for HSN, 64% would die, be very sick, or be homeless, 18% would be in poverty, and 7% would live paycheck to paycheck. The percent of respondents that would be okay without any support was 20% for LSN, 6% for MSN, and 0% for HSN.

Without support for socializing, 9% of LSN would have no one in an emergency, be severely abused, or severely hurt others, 35% would be very lonely, be taken advantage of, or badly upset others, and 9% would have only shallow relationships; for MSN, 15% would be isolated or severely at risk, 47% would be lonely or at risk, and 9% would have only shallow relationships; and for HSN, 48% would be isolated or severely at risk, and 48% would be lonely or at risk. The percent of respondents that would be okay without any support was 9% for LSN, 0% for MSN, and 4% for HSN.

Overall Need for More Support

Most LSN needed more support in order to be healthy (53%) or were healthy with the amount of support that they had but would be less stressed with more support (41%); a minority were fine with the support they had (6%).

Half of MSN needed more support to be healthy (50%), but many were fine with the support they had (8%) or were healthy but would be less stressed with more support (28%); in contrast, 14% needed more support soon in order to survive.

Most HSN needed more support in order to be healthy (75%), but 4% were fine with the support they had, 11% needed more support to be less stressed, and 11% needed more support to survive.

Reasons for Not Having More Support

LSN respondents were the most likely to have been diagnosed too old for developmental disability services (41% vs 14-21%), to not be considered disabled enough for support meant for disabled people (59% vs 36% MSN vs 21% HSN), and to be ashamed or feel like they don't deserve more support (68% vs 42% MSN vs 29% HSN).

MSN were the most likely to say their friends, family, or community refuse to help them (39% vs 29% HSN vs 6% LSN) or can't help them (44% vs 35% LSN vs 29% HSN).

HSN respondents were the most likely to say insurance doesn't cover the services they need (29% vs 19-24%) and that they can't afford private-pay services (46% vs 31-35%).

Across groups, 28-32% had an IQ too high to qualify for developmental disability services, 18-26% weren't poor enough for services meant for low-income people, 0-3% couldn't get help because of their immigration status, 21-28% lived in area without the services they needed, 61-67% didn't understand the process for getting more support, and 7-15% lived in a community where getting support for a disability is highly stigmatized. 4-6% said they don't need more support.

Autism and Comorbidities

Autism Diagnosis

Formal diagnoses were most common in HSN (79%) followed by LSN (71%) and MSN (67%). 11% of MSN, 7% of HSN, and 6% of LSN had no diagnosis.

Almost all LSN were diagnosed with a non-DSM-5 diagnosis (26%), ASD with no level (32%), or level 1 ASD (29%); 3% had level 2 ASD. Most MSN were diagnosed with a non-DSM-5 diagnosis (28%), ASD with no level (17%), or level 1 ASD (11%), but 22% had level 2 ASD. Most HSN were diagnosed with level 2 ASD (21%), level 3 ASD (21%), or split-level 2/3 ASD (14%), but 7% had a non-DSM-5 diagnoses, 25% had ASD with no level, and 4% had level 1 ASD.

Autism-Related Support Needs

LSN self-reported that their autism was LSN (24%) or LMSN (76%). MSN self-reported that their autism was LSN (3%), LMSN (42%), or MSN (56%). HSN self-reported that their autism was LSN (4%), LMSN (7%), MSN (43%), MHSN (29%), or HSN (18%).

Mental Health and Developmental Disability Comorbidities

ADHD was equally common across groups (50-54%), as were anxiety disorders (56-67%), depression (41-50%), bipolar disorder (6-8%), somatic symptom disorder (0-6%), and substance use disorders (3-6%).

Tic disorders were most common in HSN (21% vs 0-6%), as were specific learning disorders (39% vs 22% MSN vs 6% LSN), intellectual disability (11% vs 0-6%), other cognitive impairment (32% vs 0-3%), expressive and receptive language impairment (36% vs 11% MSN vs 0% LSN), schizophrenia spectrum disorders (18% vs 11% MSN, 0% LSN), OCD (32% vs 25% MSN vs 18% LSN), PTSD (54% vs 44% MSN vs 12% LSN), and dissociative disorders (61% HSN vs 31% MSN vs 6% LSN).

Eating disorders were least common in LSN (18% vs 29-31% MSN and HSN), as were sleep disorders (12% vs 28-32%) and personality disorders (0% vs 21-22%).

18% of LSN, 3% of MSN, and 0% of HSN had no mental health or developmental disability comorbidities.

Physical Health Comorbidities

For physical health comorbidities, there were no group differences for metabolic or endocrine disorder or injury (6-15%), renal or urogenital disorder or injury (0-9%), reproductive disorder or injury (6-11%), skin disorders (3-13%), blood disorders (0-4%), immunodeficiency (0-6%), cancer (0%), long-term infectious illness (0%), and limb loss or serious injury (0%).

Neurological disorders or injuries were the most common in HSN (44% vs 9-11%), as were cardiovascular disorder or injury (26% vs 3-9%), lung or respiratory disorder or injury (26% vs 14% MSN vs 6% LSN), and gastrointestinal disorder or injury (48% vs 31% MSN vs 9% LSN).

Autoimmune disorders were the most common in MSN (17% vs 4-6%), as was fibromyalgia (34% vs 19%).

Epilepsy was the least common in LSN (0% vs 9-11%), as were spinal cord or nerve disorder or injury (0% vs 11%), musculoskeletal disorder or injury (6% vs 17-22%), connective tissue disorders (16% vs 37% MSN vs 44% HSN), severe allergies (3% vs 11% MSN vs 19% HSN), hearing or vision loss (3% vs 14-15%), and post-viral syndromes (19% vs 29-30%).

28% of LSN, 9% of MSN, and 4% of HSN had no physical health comorbidities.

Other Demographics

Age

Most LSN were between 19-21 (26%), 22-25 (24%), or 26-30 (29%). Most MSN were between 19-21 (39%) or 22-25 (36%). Half of HSN were between 19-21 (50%).

Sex and Gender

Most respondents were AFAB (92-97%). 32% of LSN, 26% of HSN, and 19% of MSN identified as women. 15-22% identified as men. 47-50% identified as nonbinary or other. 4-8% across groups weren't sure.

Race and Ethnicity

85% of LSN, 74% of MSN, and 71% of HSN identified as White. Black or African American ranged from 3% (LSN and MSN) to 11% (HSN). Asian ranged from 3% (LSN and MSN) to 11% (HSN). Native or Indigenous ranged from 3% (LSN) to 8-9% (MSN and HSN). Hawaiian or Pacific Islander ranged from 0% (LSN and HSN) to 6% (MSN). Hispanic or Latino/a/x ranged from 0% (LSN) to 6-7% (MSN and HSN). Jewish ranged from 3-6%.

Referral Source

low support needs I think

Cognitive and physical function both fluctuate. Dynamic disability is what a case manager said recently. Mostly bedbound right now, 70% of time. First time independent living and working whole job and it very hard on me. But I finally have money for medical care! Have hope get better, stronger

Speech very exhausting. Spend much time isolating. Learning asterics grid aac and self advocacy for talk honest in my voice, talk honest for my needs

I have unmet support needs including needs I don't know how to describe. I have bootleg disability helper who doesn't do disability support before. But at least makes surviving possible right now. Nurse case manager trying to get me palative care. Gotta see if can get medicaid waver for home care cause need hygiene help desperately

I am here on blog to figure things out about myself. Find words for needs. Find new accessibility tools. To not be alone in it

May we all have our needs met!

[ID: Banner of starry night waves. ID end]

Side blogs

AAC symbols: @aac-symbol-crow

Regressor: @lilechos

Traits Associated with "Masked", "Internalized", "Female", or "Minority" Autism

Almost all respondents reported that they're anxious or sensitive (86%), are creative or love fantasy (77%), have only a few friendships or only shallow friendships (73%), or love animals (71%). Many respondents also reported that they have strong verbal or writing skills (66%), are shy (65%), are a people pleaser (64%), have a strong sense of justice (64%), are diagnosed with general anxiety disorder, depression, or bipolar disorder (64%), are interested in psychology (63%), have a history of being abused or exploited (61%), shut down more often than melt down (58%), have subtle stims like hair twirling (57%), and are unsure who they really are (54%).

A minority of respondents reported that they mirror other people's body language, accents, or opinions (49%), are often perceived as intense (48%), have episodes of mutism (46%), can make friends but not keep them (45%), are obsessed with or collect stuffed animals (45%), are diagnosed with social anxiety disorder (41%), are high masking (39%), have higher empathy (37%), are interested in learning social skills or how to fit in (34%), are diagnosed with posttraumatic stress disorder (33%), or are diagnosed with anorexia or another eating disorder (20%).

Relatively few respondents reported that they make eye contact that's too intense or long (16%), are diagnosed with sensory processing disorder (16%), are obsessed with celebrities or bands (15%), are diagnosed with borderline personality disorder (14%), are obsessed with makeup or fashion (7%), are diagnosed with dependent or avoidant personality disorder (6%), or are obsessed with health or exercise (4%). One respondent wrote-in that they're "well-behaved".

Out of these 32 traits, all respondents had at least 2, and some respondents had as many as 28. The average was 14.40 (standard deviation: 5.17), or 45.01% (standard deviation: 16%) of potential traits.

Traits Associated with "Unmasked", "Externalized", "Male", or "Stereotypical" Autism

Almost all respondents reported that they often or usually don't make eye contact (80%), have obvious stims like rocking or flapping (75%), and are stubborn (71%). Many respondents also reported that they have difficulty with hygiene (65%), wear the same outfit over and over (65%), are blunt (62%), are disconnected from their emotions (alexithymia; 60%), often face away from people while talking to them (54%), are interested in science or math (53%), are often perceived as argumentative (52%), and are often perceived as rude (50%).

A minority of respondents reported that they are obsessed with video games (49%), are diagnosed with attention deficit hyperactivity disorder (47%), have a flat facial expression (43%), are low masking (32%), have low or no empathy (31%), have strong math skills (30%), have a flat or robotic tone of voice (28%), are obsessed with computers or technology (27%), melt down more than shut down (24%), or are obsessed with numbers or statistics (24%).

Relatively few respondents reported that they are uninterested in having friends (19%), are obsessed with trains or transportation (11%), are diagnosed with oppositional defiant disorder, conduct disorder, or intermittent explosive disorder (11%), are not creative (5%), or are diagnosed with schizoid personality disorder (2%). One respondent wrote-in that they're a "savant".

Out of these 26 traits, all respondents had at least 1, and some respondents had as many as 23. The average was 10.71 (standard deviation: 4.02), or 41.18% (standard deviation: 15%) of potential traits.

Ratio of Traits

Some participants endorsed more traits than others, so the best way to understand dominance of one profile compared to another is a ratio of the percentage of traits endorsed from each profile.

Overall, 60% of respondents endorsed a higher percentage of "masked" autism traits, 39% endorsed a higher percentage of "unmasked" autism traits, and 1% had the exact same percentage of traits from both categories. However, 53 respondents (28%) had only weak leanings in one direction or another (a ratio between 0.80 and 1.20). For example, a respondent with a slight leaning towards masked autism (1.16) endorsed 31% of traits from "masked" autism and 27% of traits from "unmasked" autism, which is very similar! In contrast, 45% of respondents had a clear leaning towards "masked" autism (17% between 1.2 and 1.5; 15% between 1.5 and 2.0; 12% over 2.0), and 27% had a clear leaning towards "unmasked" autism (9% between 1.2 and 1.5; 8% between 1.5 and 2.0; 10% over 2.0).

Put differently, only 23 respondents had twice or higher the percentage of "masked" compared to "unmasked" traits, and only 18 respondents had twice or higher the percentage of "unmasked" compared to "masked" traits.

Profile: "Masked" Autism

Of the 23 most extreme responders, 57% still reported that they often or usually don't make eye contact, and 52% reported that they're stubborn. 48% are obsessed with video games. 39% are interested in science or math, wear the same outfit over and over, or have difficulty with hygiene. 35% have ADHD. 30% have obvious stims. 26% are obsessed with numbers or statistics, often don't face people while talking to them, or are disconnected from their emotions. 22% are often perceived as argumentative. 17% are obsessed with computers or technology or have strong math skills. 9% are blunt, have a flat facial expression, or aren't interested in having friends. 4% have low or no empathy.

In contrast, none of the highly "masked" respondents are often perceived as rude, are obsessed with trains or transportation, lack creativity, melt down more often than shutting down, have a flat or robotic tone of voice, are low masking, have schizoid personality disorder, or have oppositional defiant disorder, conduct disorder, or intermittent explosive disorder.

61% were undiagnosed, and 39% had a formal ASD diagnosis (26% level 1 ASD, 4% level 2 ASD, and 9% ASD with no level). 91% were assigned female and 9% male. 39% identified as nonbinary, 35% as men, 22% as women, and 4% didn't know. 18% were racial or ethnic minorities (9% Asian, 9% Jewish, and 5% Hawaiian or Pacific Islander). 4% had PCOS, and 13% suspected they had PCOS. 4% identified as straight, 26% as gay, lesbian, or homosexual, 35% as bisexual, pansexual, or otherwise multigender attracted, 26% as queer or other, and 9% as asexual. 83% had never had a visible physical disability, 9% had a visible disability at the time of the survey, and 9% didn't know. 4% were a religious minority at the time of the survey, 9% were raised as a religious minority, and 87% had never been a religious minority.

Profile: "Unmasked" Autism

Of the 18 most extreme responders, 61% still reported that they're creative or love fantasy, and 56% reported that they're often perceived as intense. 50% love animals and have only a few friends or only shallow friendships. Additionally, 44% have a history of being exploited or abused. 39% are anxious or sensitive. 33% are obsessed with or collect stuffed animals or are interested in psychology. 28% have strong verbal or writing skills, are shy, or have posttraumatic stress disorder. 22% have a strong sense of justice or have general anxiety or a mood disorder. 17% have subtle stims like hair twirling, have episodes of going mute, can make friends but not keep them, or have sensory processing disorder. 11% have social anxiety disorder. 6% are people pleasers, are obsessed with celebrities or bands, shut down more often than melting down, make eye contact too intensely or stare, have high empathy, are unsure who they really are, or have anorexia or another eating disorder.

In contrast, none of the highly "unmasked" respondents are obsessed with health or exercise, are obsessed with makeup or fashion, are interested in learning social skills, mirror other people, are high masking, or have borderline personality disorder, dependent personality disorder, or avoidant personality disorder.

94% had a formal ASD diagnosis, and 6% were informally diagnosed by a therapist (44% no level, 6% level 1, 17% level 2, 22% level 3, 6% split level 1/2, 6% split level 2/3). 87% were assigned female and 13% male. 39% identified as men, 28% as nonbinary, 22% as women, and 11% didn't know. 29% were racial or ethnic minorities (18% Black or African American, 12% Asian, 6% Native or Indigenous, and 6% Hispanic or Latino/a/x). 6% had an intersex disorder, 6% suspected an intersex disorder, 6% suspected PCOS, and 39% weren't sure. 6% were straight, 22% were gay, lesbian, or homosexual, 28% were bisexual, pansexual, or otherwise multigender attracted, 28% identified as queer or other, 6% asexual, and 11% didn't know. 56% had a visible physical disability now and 44% as a child. 28% were a religious minority now and 17% as a child.

Overall Demographics

Most respondents were diagnosed through a formal evaluation (64%). 12% were diagnosed informally by a therapist, and 5% had a special education designation. 19% were self-diagnosed or suspected autism.

14% had a non-DSM-5 diagnosis, and 27% had ASD with no level. 20% had level 1 ASD, 11% level 2, 4% level 3, 1% split level 1/2, and 2% split level 2/3.

19% were diagnosed before age 8, 10% between ages 9 to 12, 13% between ages 13 to 15, 11% between ages 16 to 18, 12% between ages 19 to 21, 7% between ages 22 to 25, and 7% after age 26.

Respondents skewed young. 29% were under 18, 22% between 19 to 21, 23% between 22 to 25, 19% between 26 and 30, 5% between 31 and 40, and 2% over 41.

95% of respondents were assigned female at birth. 40% identified as nonbinary or other, 32% men, and 23% women. 5% were unsure. 66% did not have PCOS or an intersex disorder. 9% were diagnosed with PCOS, 6% suspected they had PCOS, 2% were diagnosed with an intersex condition other than PCOS, and 6% suspected they had an intersex condition other than PCOS. 10% didn't know.

4% identified as straight or heterosexual, 20% gay, lesbian or homosexual, 20% bisexual, pansexual, or otherwise multigender attracted, 27% as queer or other, 26% asexual, and 3% didn't know.

Most respondents had never had a visible physical disability (70%). 22% had a visible physical disability now, and 9% had had a visible physical disability as a kid. 6% were unsure now, and 9% were unsure as a kid.

30% of respondents were racial/ethnic minorities, including 10% Asian, 7% Black or African American, 6% Native or Indigenous, 5% Hispanic or Latino/a/x, 4% Jewish, 2% Hawaiian or Pacific Islander, and 1% North African. 21% were a religious minority at the time of the survey, 12% had been raised as a religious minority, and 75% had never been a religious minority.

Most respondents found the survey through Tumblr (82%). Others found it through Reddit (12%), a friend (3%), and Discord (2%).

Demographic Differences

There were no significant differences by gender group or by trans status. Nonbinary individuals had the highest proportion of "masked" (65%) versus "unmasked" (35%) autism, but men and women were almost identical, and nothing was statistically meaningful.

Across diagnostic groups, respondents with informal autism diagnoses endorsed the highest average number of "masked" autism traits (16.52), followed by undiagnosed respondents (15.09), respondents with level 1 ASD (14.5), respondents with higher level ASD (14.04), and, finally, respondents with no level (13.11). Respondents with higher level ASD endorsed the highest average number of "unmasked" autism traits (13.57), followed by those with informal diagnoses (11.61), those with no level (11.16), those with level 1 ASD (9.5), and, finally, undiagnosed respondents (8.06). Overall, 89% of undiagnosed respondents leaned towards "masked" autism; 73% of respondents with level 1 ASD leaned towards "masked" autism; 64% of informally diagnosed respondents leaned towards "masked" autism; respondents with no level were evenly split between "masked" and "unmasked" autism; and 68% of respondents with higher level ASD leaned towards "unmasked" autism. These differences were significant.

There weren't enough straight respondents to analyze by sexual minority status.

Those who had ever had a visible physical disability endorsed a lower number of "masked" autism traits (12.48) and a higher number of "unmasked" autism traits (11.90) compared to those who had never been visibly physically disabled (masked: 14.73; unmasked 10.22). Overall, 36% of individuals who had ever had a visible physical disability leaned towards "masked" autism and 62% "unmasked" autism, and 67% of individuals who had never been visibly physically disabled leaned towards "masked" autism and 33% "unmasked" autism. These differences were significant.

Racial/ethnic minority respondents reported a higher number of both "masked" autism traits (14.93) and a higher number of "unmasked" autism traits (11.91) compared to those who were white (masked: 14.28; unmasked 10.29). Overall, racial/ethnic minority respondents were evenly split between "masked" autism and "unmasked" autism, and 65% of white respondents leaned towards "masked" autism and 35% "unmasked" autism. These differences were significant.