My website reflects my experience and the resources that I sought and have either benefited from or that have alerted me to difficulties with my son Michael’s well-being. Healthcare is one of those areas of great concern based on numerous health emergencies Michael has had in the past few years.
In 2012, my son Michael had a bleeding ulcer, which ultimately turned into a perforated ulcer resulting in emergency surgery, three days in ICU with a stomach drain from his nose, and an additional twelve-day hospitalization. It was only because of my assertiveness and insistence that he got the needed endoscopy which revealed a large bleeding ulcer with layers of scar tissue.
Had I listened to the physician, we would have left the office with a “wait and see” recommendation—with potentially disastrous consequences.
When I met with the physician after Michael’s endoscopy, he apologized for not believing me when I was being insistent about Michael’s condition. His argument was that Michael didn’t act as if he was sick or in pain. He still doesn’t; this was the point I was trying to make! I know when life is out of balance for him and I am willing to step up and take the hit. I hope you will consider the following recommendations and why I feel strongly about what I have provided here.
Community Quality of Life: Healthcare Providers Accessibility and ASD Knowledge
An important feature of community quality of life for adults with autism is accessibility and ASD-knowledgeable healthcare providers. Unfortunately, healthcare for many adults with ASD living and working in communities remains elusive. Sometimes that’s because of healthcare insurance and other times it is due to communication challenges and the lack of history.
Although ASD is a neurological disorder, many individuals experience co-occurring diagnostic concerns such as: intellectual disabilities, gastrointestinal issues, seizure disorders, allergies, anxiety, and other mental health issues (to name a few).
“Like other adults, adults on the autism spectrum need to use healthcare services to prevent and treat illness. As a primary care provider, I know that our health care system is not always set up to offer high-quality care to adults on the spectrum; however, I was saddened to see how large the disparities were. We really need to find better ways to serve them.”
Christina Nicolaidis, M.D., M.P.H.,
Principal Investigator and Associate Professor of Medicine
General Internal Medicine and Geriatrics
at OHSU, Portland, OR.
Important Items to Consider
As a parent whose son has several co-occurring medical conditions, I try to convey this to families, guardians, and research providers! Here are a few items to consider:
It is important that your doctor has experience with developmental disabilities, specifically autism.
You can review the doctor’s credentials with your health insurance company, go online through Consumer Reports, or talk with other families, guardians, or disability advocacy groups who can share their experiences with you. Inadequate skills and the lack of knowledge regarding autism by a healthcare provider is a significant challenge. (The World Health Organization reports that people with disabilities were more than twice as likely to report finding health care provider skills inadequate to meet their needs, four times more likely to report being treated badly, and nearly three times more likely to report being denied care).
Talk with the healthcare provider; ask them what their experience is with ASD and/or their willingness to learn more!
Autism Disclosure, whether to tell to provider about an ASD diagnosis is your choice!
In most cases, the benefits of disclosing far outweigh the risks, but you need to examine your son’s or daughter’s circumstances and situation to know what is right for them.
Be prepared, you are the voice of the person with autism.
Don’t assume that the provider has an understanding of certain disabilities; their focus is typically on their area of expertise. Provide the healthcare provider with a medical history, the individual’s communication styles, sensory issues, and what they look like on a typical day.
First impressions can be wrong. Inform and educate the healthcare provider about your son or daughter—what they look like on a good day and when you know they are not feeling well—then stand your ground.
One tool that I refer other families to was developed by a parent with an adult child with autism. It is a website that has information and worksheets for adults on the autism spectrum, their supporters, and the healthcare providers they access. The focus of this resource is specifically primary healthcare or healthcare access with any doctor. Here is that website, check it out! http://www.autismandhealth.org/
Complete the healthcare tools and provide it to the provider a day or two before the appointment. He/she will not have the time during your appointment.
Examine the front-office check-in policy, procedures, and protocols
Does it meet the needs of the individual with autism who may already have increased anxiety, have difficulty with “waiting”, has difficulty with social interactions and overwhelmed with sensory processing issues (i.e. auditory, olfactory, tactile, etc.)?
In my experience, I have really liked most of my son’s doctors, but the front-end office hasn’t always been as understanding of or accommodating to my son’s needs. That also goes the other way around too: sometimes the front-end office is fabulous and the doctor is not so desirable. It’s vital for healthcare providers to follow process and procedures, but often our sons and daughters don’t fit into those descriptions. There has to be a balance! As the parent or guardian, your role is to advocate for the individual’s civil right to access services based on their disability;
- Ability to be checked into an exam room as soon as possible, rather than having to wait in the reception area.
- Scheduling an appointment at a specific time to accommodate a patient with an anxiety disorder who has difficulty waiting in a crowded waiting room.
- Ability to call and check-in with the clinic, while waiting in the car or coffee shop until the doctor can see the individual
FYI – Follow Your Instincts
If the healthcare provider doesn’t feel right, he/she is probably not going to be right the right provider. Don’t feel like you owe the healthcare provider your allegiance; look for another one who will meet the needs of the person with ASD and you, the voice/advocate for the individual with ASD.
Does the provider offer full access to healthcare information, reports and labs?
Research what the clinic offers for their patient’s access to healthcare information. It is necessary to have visual access to reports and labs, rather than getting a call from the healthcare provider with a one or two-word summary of the test or lab: “it was normal” or “call to make an appointment.” You need to be in control of the information!
Often healthcare providers have working relationships with local hospital and medical centers. If the person with autism needs emergency care or surgery, having access to valuable information through a patient’s healthcare portal can provide valuable information that may save time or unnecessary procedures and tests.
- Patient healthcare portals, such as MyChart, allow the patient/guardian to see what the doctor sees, reports, labs, x-rays, etc.
- In the event that the person with autism needs to see another specialist, often out-of-network from their primary care physician, it is convenient to have immediate access to reports and labs via a portal. It saves time and anxiety waiting for other healthcare offices to send important information.
Does the provider take time to learn the communication needs of your son or daughter?
Do they ignore or bypass them altogether and talk only to you or the care provider? Building trust between the provider and patient is important for quality care outcomes. As the parent/guardian/care provider, come prepared with visual supports: icons, iPad, video, a “social story”, etc. Model to the provider the shared communication style you have with your son or daughter. It’s amazing how often the provider will begin to interact and develop the basis of a trusting relationship.
Where can I file a complaint if I can’t work it out with my provider or health care plan?
Contact or view the Disability Rights of Washington.
If you are unable to resolve your problem with the public or private provider or the Section 504 or ADA compliance officer for the provider, you can file a complaint with any number of state and federal agencies that are responsible for enforcing the ADA and section 504.
Complaint form Washington State Department of Health, Health Systems Quality Assurance
To file a complaint against a health care provider or facility, an individual can fill out the HSQA complaint form available online.
The form can be mailed to:
Washington State Department of Health
Health Systems Quality Assurance
PO Box 47857
Olympia, Washington 98504-7857
Complaint form Office of Civil Rights:
Complaint forms are available online from OCR. Once completed, they can be printed out and mailed or faxed to the OCR regional address where the alleged violation took place. The address and fax number for Washington State is:
Office for Civil Rights, DHHS
2201 Sixth Ave – Mail Stop RX-11
Seattle, WA 98121
References Material and Substantiating Publications:
Primary Care for Adults on the Autism Spectrum