Table 3.

Themes and Quotes from the “Family Impact” Section of the Survey

Topic	Theme	Illustrative quote(s)
Challenges and frustration	Communication impairment	“The lack of communication from our son. He can't express his needs/ wants/feelings.”
	Behavioral challenges	“She will not BUDGE on anything that she has decided needs to be her way. She will have total meltdowns if we try to change anything. She has been known to start screaming if we try to change one of her routines.”
	Slow developmental progress	“The greatest frustration is [my son’s] lack of progress. We have ABA therapy but he seems to take one step forward and two steps back.” “Also, the slow progress is disheartening especially when the child tries so hard. Other people give up too easily- school, therapists, family…”
	Lack of independence with self-care activities	“The lack of independent skills even including fully dressing and toileting, needs help with eating, etc. most children with DS are able to become somewhat independent in these basic areas. They can speak and interact with others.”
	Need for constant supervision	“People don't understand that he is a runner and that (…) I can’t just leave him with anyone (the free respites are nice but there isn't anyone qualified to watch him).”
	Lack of knowledge from educators and providers	“Fighting for services/advocating for my son. It debilitates me.” “Fighting with the people who are supposed to be helping us. The schools, doctors, therapists, etc. have more often than not been working against us or simply no help.”
Impact on the family unit	Social isolation	“Trying to do ANYTHING as a family because his social aversions continue to be so significant and disruptive. (…) We have never gone to a restaurant, movie theater, or public swimming pool as a family. We have never taken a family vacation and either significantly disrupted or been forced to leave every family celebration (weddings, funerals, graduations, etc.) we've attempted to attend.”
	Impact on career, marriage	“Not having more children; we didn’t think we could handle more…. Career trajectory flatlined. Marriage taxed: not always energy for each other.”
	Increased empathy	“I cannot understate the degree to which this has impacted my children in their lack of judgment when faced with the experience of socializing or spending time alongside a same-aged peer with significant differences. They have learned lessons from him my husband and I would have never been able to directly teach and they're far better people already at their ages than I ever was during the same periods of my own life”
	Worrying about the future	“The future seems more unclear than that of families with a DS child. There seem to be so many more opportunities for them to plan for. Depending on where a person is on the spectrum the same seems true for autistic people. Now, we feel that he will always live with us and have a full time care giver.”
How the caregiver experience differs from that of caregivers of individuals with DS alone or ASD alone	Compound disability	“The DS/ASD confuses him and us. [My son]'s lack of communication and fear of change makes his developmental disfunction exponential.” “The "difficulties" we experience as part of her [DS] diagnosis are so insignificant compared to what we're constantly up against with [my son with DS-ASD] that they truly do not factor in to how we handle our daily lives
	Lack of specialized interventions	I think they are vastly different than parents of children with only DS. The interventions we use are more focused on the symptoms of our child's autism. However, it seems there is a lot of disagreement in the autism community and we haven't wanted to get involved”
	Lack of belonging to either community	“Then when you are at ASD events the other parents think we don't belong because the ASD presents differently in our kids so they think we shouldn't be there” “In short, I think our experiences are challenged by multiple facets not facing families with a singular diagnosis. I DO think it's harder. And lonelier. And involves more opportunities for questioning our effectiveness and confidence as parents due to the increased communities in which comparing our son to others with a similar diagnosis leaves our son always coming up short.”
	Feeling judged by other parents	“As a mother I’ve repeatedly heard his ASD is just behavior I have promoted by spoiling him or enabling him to do whatever he wanted. It’s my fault he acts the way he does. I should put him in a nursing home & get my life back. When I don’t put him away in a home, those judgmental friends & family walk away from us.” “My son looks like a kid with Down syndrome. If that's all anyone knows about him and they're in a position to consider my son as the product of the quality of interventions available to a child with that diagnosis my husband and I both look like negligent and incompetent parents”