News The latest developments in autism research.

Primary care doctors unprepared to help adults with autism

by  /  16 May 2015

© Doiy Missed connection: Some physicians admit that they feel uncomfortable around adults with autism and don’t know how to help them.

Healthcare providers in the U.S. are ill equipped to care for the growing number of adults with autism, according to unpublished results presented yesterday at the 2015 International Meeting for Autism Research in Salt Lake City, Utah.

A survey of nearly 1,000 primary care physicians and other healthcare professionals across the U.S. found that most of them don’t have the training needed to care for adults with autism. They also greatly underestimate the number of adults with autism in their practice, despite having a basic understanding of the disorder’s symptoms.

The findings come on the heels of a large survey of medical records, which found that adults with autism face a host of health problems1. Many of these conditions, such as diabetes, heart disease and obesity, are preventable. So one reason for their prevalence may be that people with autism aren’t getting good healthcare.

In the new study, researchers surveyed healthcare workers who are part of Kaiser Permanente, a managed healthcare provider in Northern California. These doctors, nurses and social workers were among those available to the adults with autism who were found to have health complications.

“We said, ‘We’ve looked at the patients, now let’s look at who’s taking care of these patients and how much they know about them,’” says Maria Massolo, research project manager for Kaiser’s Division of Research, who presented the findings yesterday.

The providers admitted to being unprepared: 77 percent rated their ability to care for someone with autism as poor or fair. What’s more, they seemed unaware of how many adults with autism were in their care. For example, about 2 percent of the respondents said they had more than 10 adults with autism in their clinics, when in fact about half of the providers were treating that many.

The comments in the survey were even more telling, says Massolo. For example, one doctor indicated that he was unaware that autism even affects adults. He stated that knowing how to care for people with autism does not concern him, as he doesn’t treat children.

To better understand the healthcare workers’ responses, the researchers interviewed nine providers in person. These physicians revealed that they don’t know what to do when faced with an individual with autism. Some of them said that they feel uncomfortable around people with the disorder.

The good news is that the practitioners expressed interest in learning about people with autism and how to care for them. The survey response rate alone, a surprising 25 percent, indicates that providers want to improve in this area, says Massolo.

She and her team are working to establish training opportunities. They plan to study the transition from pediatric to adult healthcare in hopes of identifying strategies that would lead to better medical care for adults on the spectrum.


1: Croen L.A. et al. Autism Epub ahead of print (2015) PubMed

  • Patricia

    I am aware of this issue, and am going back to school so I can help change this. I would very much appreciate your input as to how to assist physicians, what they would respond to in terms of education in this area, etc. Are there organizations I can contact NOW to lay groundwork or build relationships so that when I have the credentials, I can get started quickly?

    Thank you very much. Feel free to contact me at [email protected] if you wish.

  • Jo Ann Z.Engelhardt

    I am parent of 58y.o.non verbal man (one of twins.) Requesting presence & input from parent (or Group Home caregiver)helpful. My son can be quite responsive to direction if treated with respect & patience. He is eager to please. Of course, the rushed time alloted to MD visit is counter-productive.
    Thank you.

  • Cassie

    Remember that everyone is not the same. For example, I’m very aware of my body and feel every ache and pain, so I’m sure at times I come across as a hyperchondriac, but at the same time it make take several visits for me to bring up what I’m really worried about. Also I handle major pain differently to minor pain, while I can be very verbal about paper cuts etc, major pain causes me to retreat inside myself, I find I give one word answers, and I’m unable to process verbal communication. I’ve learnt if I can’t read ( my obsession) then I’m in significant pain or really sick.

  • LynneUK

    I suspected my extremely reclusive son had Asperger Syndrome. Periodically I would visit our GP and hope something had changed. My original GP tried to help but the local care trust declined any request for support. Consultants who professed to know about autism declined to see my son because no one would refer. Area not right, professional not in right specialism. Then another 5 years and another visit to GP (different area, marriage breakup) and this GP would not involve me at all. She gave my son a depression assessment form to fill in (by then he was 28 yrs old) and told me to get a life.

  • Michelle Killian

    The International Board of Credentialing and Continuing Education Standards (IBCCES) has a solution for this growing concern. We offer certification for professionals in autism. This ensure that the professional receives updated training and stays up to date with autism, also giving them a community in which to share ideas and best practice. You can find us at

  • Kristin Chambers

    This has become a growing concern, however many professionals are looking to become Certified Autism Specialists or get their Autism Certification in order to gain both credentials in the field and get the training needed to stay up-to-date.

  • Beth Dumont

    This goes to show the complete failure of the mefical model that underpins all medical training.
    Those who we can’t ‘cure’ we wash our hands of. Same thing goes for those who are different to what us the perceived norm – dealing with them is too much like hard work. What will it take to completely overhaul our health care training system. After all we depend currently on doctors to deliver the diagnoses that lead to the provision of suppotts yhst enable us to live fulfilling lives of putpose.
    I am one of the lucky ones – my son’s GP is autism savvy, and he will be able to build a relationship with her. BUT I had to move from a regional to a capital city to find her, along with a few other autism savvy allied health providers – psychologist and exercise physiologist being the main two. My son has become much more emotionaly calm and has undergone significant development in the past year hecause of the provision of his current supports. .

  • Julie Lastname

    I’m an adult with autism, but I recently went from high-functioning to rather-low-functioning when I had the worst headache of my life lasting for several weeks. I feel like I had to learn to think again, and several skills (walking in a straight line, walking up and down stairs, cutting food, typing, even READING!) had to be re-learned, and some I’m still not that great at sometimes. I stopped being able to remember new faces, or visualize anything… sometimes, I don’t have enough depth perception or spatial understanding to cross the street or boil water. There are marks in the hallway from me bumping into the wall so much…………………………………….. ………………………………………………………………..and yet, I haven’t gotten any real medical help. As soon as the doctor hears “autism” or sees it on my chart, he doesn’t take any of my symptoms seriously. I feel voiceless and helpless. I’ve fallen through the cracks, and I’m sure I’m not the only one down here in the dark.

  • Jacqueline White

    Just plain help

  • Jacqueline White

    I need resources. I am at wits end. My husband is 65 and has not been diagnosed with autism. He was evaluated, however, for a stutter when he was a kid and he no longer stutters. Of course because they knew nothing about autism back then that’s when the evaluation ended. I feel he is autistic because he has no friends, he is on his third marriage, when we first were married I asked if he would like to do couples massage with me (he can get very agitated) he all but cringed at the idea. He said you can go but most definitely not me. He sometimes flinches when I touch him. I’m not 100% sure but I think I’ve seen him have occasional peti mal seizures (he stares in a straight ahead stare smiling for about a minute or so). He goes through stages where he is very belligerant and wants a divorce and won’t kiss me (goodbye/night). We are in that stage right now. Then He will apologize and start saying “I love you” again and kissing goodbye/night. Right now he almost cringes at the thought of being touched by me. He will not go for evaluation (for mental issues that is). I don’t know how to approach him for that. Can anyone recommend any online resources for me. He gets mad at me when I try to get him to read anything about this. I have not mentioned that I feel that he is autistic. Please help.

  • carrie

    We are sick because you just described how pathetic doctors are. I had a breast mass and refused biopsy because drs do not understand us. I HATE to be touched. No way can we just go and have a colonoscopy like NTs can. I had one once under sedation and had two weeks or horrific pain. Could not self soothe or do anything I needed to. Does it matter if we get sick? Suicide thoughts spike in us as we age precisely because those who really love us, like our parents, are dead and everyone keeps thinking that someone who is really 12, though looks 60, can somehow act 60 just because we have services. What would help? A world that is not so NT, maybe. Maybe housing that is safe, hospitals and drs that get autism. My last dr got it, but like the lady below mw wrote—once you have austim on your record, the drs don’t so a lot and I see why. If you cannot even touch someone without them screaming, why would they suggest a colonoscopy? Then what? What if it’s cancer? Chemo??? UNTHINKABLE. No mystery that we may not have the same life spans as NT but an autistic in an NT world, maybe we don’t even want to live 80 years in an NT world.


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