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 RESULTS from the SURVEY
“Adult ADHD Diagnosis & Treatment” Survey created March, 2013 by Bonnie Mincu, Senior Certified ADHD Coach and founder of “Thrive with ADD” PURPOSE of the SURVEY: To determine what kinds of experiences adults with ADD/ADHD had with diagnosis and
treatment, and their feelings about medication and having ADHD in general.
WHO WAS SURVEYED: The survey was announced to 21,000+ ADD/ADHD Adults on the Thrive with ADD mailing
list and Facebook page. The survey responses were anonymous.
RESPONDER PROFILE: Out of 372 responses, almost 75% were female. Fifty-nine percent (59%) were age 50+.
COMMENTS: My thoughts and conclusions follow each question.
SURVEY QUESTIONS: Q: What are your feelings and beliefs about ADHD medication?
45% I feel ok about taking it, just like for any other medical condition 16% 8% I would only take it as a last resort after trying other treatments I accept that it’s helpful, but I feel like it’s a cop-­‐out or crutch 4% I would not take it; I am against taking medication of any kind BONNIE'S COMMENTS: Once you factor out those who are against all medication, and those who answered “other,” it turns out that 65% feel ok about taking ADHD medication. That leaves 35% of people who would only begrudgingly accept taking ADHD medication, and who do not have positive feelings about taking it. Q:
Have you been diagnosed and/or are you receiving treatment for these co-occurring
conditions? CONDITION Diagnosed Treated Depression 49% 31% Anxiety 32% 20% Sleep Apnea 13% 7% Learning Disability 14% 3% Obsessive/Compulsive 8% 3% Bi-­‐Polar 7% 3% BONNIE'S COMMENTS: The most commonly diagnosed condition by far was Depression, followed by Anxiety. It seems curious that a much smaller percent of those diagnosed are actually taking treatment. However, further analysis of the respondents’ comments throughout the survey indicates that many believe they were incorrectly diagnosed with these conditions. Q:
Have you ever been diagnosed with ADD or ADHD by a doctor or qualified
professional?
67% YES 24% NO 9% Not sure BONNIE'S COMMENTS: The “Not sure” responses were explained by the lack of formality in the diagnostic procedure. Some patients were given medication to try, but it was unclear to the patient whether there was an actual ADHD diagnosis. Some doctors cautioned their patients against the advisability of listing a “mental illness” on their record; therefore, the patient wasn’t sure if he or she was actually diagnosed. Q: What type of doctor prescribed your medication? 65% Psychiatrist or Psycho-­‐pharmacologist 16% Other medical doctor 11% *Psychologist / counselor / therapist BONNIE'S COMMENTS: *Psychologists, counselors and therapists are not usually medical doctors who can prescribe medication. These responses were listed under “Other,” but in significant enough numbers to include. Psychologists can diagnose and write a recommendation to a medical doctor to prescribe medication. Q: How old were you when first diagnosed?
37% 23% 19% 9% 6% 4% 2% 40’s 50’s 30’s 20’s child 60’s teens BONNIE'S COMMENTS: It is quite common for people to reach middle age before getting a diagnosis. Often ADD Adults don’t know of their own condition until it is suspected or diagnosed in their children. In this case, the large percentage diagnosed in their 40’s and 50’s reflects the relatively older profile of respondents who filled out the survey.
Results: "ADHD Diagnosis & Treatment Survey" March 2013 Survey Page 2 © Bonnie Mincu, Thrive with ADD www.thrivewithadd.com Q: What was the process used in your diagnosis?
31% I filled out a questionnaire / test in the doctor’s office 29% I had a full battery of cognitive tests lasting several hours 19% The doctor just asked me questions 15% Other* 2% Brain scan or spec scan BONNIE'S COMMENTS: Only a tiny percentage of people had a brain scan included in their diagnostic process. Of the “Other” responders, the most common response was a diagnostic process that included a computer test, filling out a long questionnaire lasting several hours, or saying they were self-­‐diagnosed, which the doctor verified. Q: How did you FEEL when you received your ADD / ADHD diagnosis? (Choose up to 3)
56% 55% Validated to know I wasn’t “lazy, crazy or stupid” Relieved to finally have an explanation 35% 31% 20% Sad to think of “lost” years when I could have been treated Interested and intellectually curious to learn more Resentful to have wasted so much time struggling Results: "ADHD Diagnosis & Treatment Survey" March 2013 Survey Page 3 © Bonnie Mincu, Thrive with ADD www.thrivewithadd.com 10% Supported knowing I share the same struggle as others 10% Ashamed to have a “disability”* 6% Surprised; I would never have considered it 5% Resistant, not really believing it was true BONNIE'S COMMENTS: The most common reactions, given by more than half the respondents, were feelings of validation and relief. These were followed by a sense of mourning for the “lost” years that might have been easier with a diagnosis and treatment, and a piqued interest and curiosity about ADHD. *ASHAMED of having a disability – The 10% who included shame as a response were more likely to feel other negative reactions as well. A majority, 52%, were resentful of their struggles (compared to only 20% of the total who listed “resentful” as one of their main feelings). And 44% of the “Ashamed” group listed “Sad,” compared to 35% of the total. This may mean that those who were ashamed of having a disability were experiencing more difficulty than others who were diagnosed. Those who felt shame were also three times more likely than others to be uncomfortable communicating with their doctor. It is impossible to say if the doctors’ attitude contributed to the shame, or if the individuals’ shame kept them from asking the doctor questions. The feeling of shame kept people from communicating with others about their diagnosis as well. For the shame group, 28% hid their ADD from almost everyone, compared to 18% of the responders as a whole. On the positive side, the people who felt ashamed showed a seeking curiosity in the questions they would pose to a psychiatrist. They wanted to know how they could be proactive in their management and treatment, and sought a more precise diagnosis. Q: Do you take, or have you taken, ADHD medication prescribed for you?
58% I currently take it just about every day 31% I had taken it in the past, but am not taking it now 6% I currently take it just when I need to 5% I never took it BONNIE'S COMMENTS: I was surprised that almost a third of those prescribed medication are not currently taking it. Q: What type of medication are you currently taking for ADD / ADHD?
81% Stimulant Results: "ADHD Diagnosis & Treatment Survey" March 2013 Survey Page 4 © Bonnie Mincu, Thrive with ADD www.thrivewithadd.com 4% Both stimulant and non-­‐stimulant 2% Non-­‐stimulant 11% Other / don’t know BONNIE'S COMMENTS: Stimulant medication is by far the most commonly prescribed for respondents. Many of the “other” comments named a brand of stimulant. Q: Which best describes your experience with ADHD medication?
22% It required some trial and error / adjustment; but was positive once we got it right 21% It helps me focus, but has some negative aspects 20% It was positive 13% (Other ) 10% I can’t tell if it works at all 8% Experience was negative/unsuccessful; I didn’t pursue it 6% It worked in the past, but then stopped working BONNIE'S COMMENTS: A total of 63% reported a generally positive response to their medication. Only 8% had a negative reaction. The “other” comments were a mix, some citing negative side effects such as increased anxiety, aggressiveness, restless legs, and extreme hyper-­‐focus. Two responders said they had better results with nicotine and omega3.
Q: Which best describes how taking ADHD medication has affected your life?
29% It helps a lot in what I have to do; I can focus whenever I need to. 25% It helped a little; I think I can focus better with medication. 19% (Other) 16% I would not be able to succeed (at school, work, etc) without it. 11% I don’t think it made a difference for me. BONNIE'S COMMENTS: The 70% who felt positive about the effect of medication includes both those currently taking it and those who took it in the past. Of the “Other” responses, many reported that the medication helped with focus, but raised issues with co-­‐
occurring conditions that made it a problem to take. A handful said the effect of medication on their life was negative, due to sleeplessness or increased anxiety. Some noted difficulty getting a prescription due to changes in doctors, finances or other circumstances. Results: "ADHD Diagnosis & Treatment Survey" March 2013 Survey Page 5 © Bonnie Mincu, Thrive with ADD www.thrivewithadd.com Q:
Regarding the doctor who treats you for ADHD: Would you feel comfortable and encouraged if you wanted to express concerns, ask questions, or request adjustment in your treatment?
54% I can be open and frank with my doctor; my doctor listens to me. 15% I feel comfortable talking with my doctor, but the appointment time limits are constraining. 15% (Other) 12% I feel comfortable asking my doctor questions, but the doctor sometimes doesn't know the answers, or may not have expertise in Adult ADHD. 5% I am not comfortable telling my doctor about concerns or symptoms regarding the medication. I feel like the doctor just wants to write a prescription and be done. BONNIE'S COMMENTS: Many of the “other” comments reflected feelings of helplessness over being limited to the doctors in their health plan or geographic area, who were not sensitive to or knowledgeable about Adult ADHD. A European respondent commented on the huge difference in understanding Adult ADHD between the Netherlands and Italy. In Italy, ADHD is considered purely a children’s condition, primarily in boys.
Q:
Have you ever attempted to get an answer or diagnosis, but had your thoughts about
the possibility of being ADD / ADHD dismissed by a psychiatrist or psychologist?
80% No 20% Yes (please explain) BONNIE'S COMMENTS: Although I was glad to see such a high majority had never experienced being dismissed by a professional, it was still distressing that as many as 20% have had this negative experience. Many of the explanations noted an attempt on the part of the doctor to dismiss the ADD symptoms as Depression. Others were told they couldn’t be ADD / ADHD because of their success, education or intelligence. Most frustrating were the comments of “helpful” advice on the part of professionals to “get off your backside and go to work.” Sometimes a doctor would refuse to uphold the diagnosis of a previous doctor. One respondent reported, “I have been un-­‐diagnosed and re-­‐diagnosed several times over 25 years.” Q:
How do you communicate with others about having ADD / ADHD?
35% I let people know as I get to know them, it depends how I feel about them. 20% It doesn’t bother me if people know; it’s not a big deal to me. 15% (Other) Results: "ADHD Diagnosis & Treatment Survey" March 2013 Survey Page 6 © Bonnie Mincu, Thrive with ADD www.thrivewithadd.com 14% I’m totally “out” about it; I could talk about it publicly or in social media. It's an important part of who I am. 13% Only my closest friends / family know. 5% I don’t want anyone to know. BONNIE'S COMMENTS: Not counting the “Other” responses, about 70% of people seem to feel a healthy acceptance about being ADD / ADHD, and don’t have undue concerns about others knowing it. The largest response shows some degree of caution, which is natural in the workplace. Correlation of Shame with communication: Those whose first reaction upon receiving a diagnosis was “Shame of having a disability” were much more likely to keep silent about their condition. Of the “Shame” respondents, 20% only told their closest friends and family, and 8% did not want anyone to know. Q:
What would you be most interested in hearing a psychiatrist explain about, on the
subject of Adult ADD / ADHD?
BONNIE'S COMMENTS An enormous variety of excellent questions were asked, including these topics: •
What’s the best medication to start with? •
What are the long-­‐term side effects of medication? •
How can I get medication without the mental illness diagnosis? •
How can I present my own research to the doctor to avoid being misdiagnosed again? •
Why is there such a prejudice / stigma against ADD / ADHD? •
Why isn’t ADD considered a gift? •
Can I avoid the ups and downs of medication, and be more balanced? •
How can I find natural non-­‐medical remedies? •
What are diet’s effects on the brain? •
Does the “brain-­‐tuning” website work? •
How can health insurance cover behavioral therapy? •
Are all brain scans equal? Is there a region where it’s best to get one? Is it worth the cost? •
How can I learn about meds when I’m too overwhelmed to read the information? •
What causes ADD to develop in the brain? •
Please explain the “executive functions” of the brain. •
Why are repetitive or boring tasks so difficult for me? •
Why is it so difficult to get simple things done? Results: "ADHD Diagnosis & Treatment Survey" March 2013 Survey Page 7 © Bonnie Mincu, Thrive with ADD www.thrivewithadd.com •
Can procrastination be cured? •
How can I get over the inertia to start anything? •
What can help my perceptive problem of being oblivious to chaos? •
How common are learning disabilities among people with ADD? •
Does my big difference between verbal and math test scores mean I have a learning disability? •
Will taking meds for children’s ADD work for me? •
Do stimulants given to children affect their substance abuse as adults? •
I’m afraid of getting addicted to medication. •
Does stopping ADD medication trigger a renewed craving for a previous addiction like cocaine? •
What is the relationship between ADD and menopause? •
Are there any studies of ADD in seniors? •
Does it get better with age, or does one learn to organize and adapt better? •
How do I know my problems are ADD, and not just my personality? •
How can I be ADD if I’ve never been hyperactive? •
Do people with inattentive ADD have low sex drive? •
How does ADD affect relationships? •
How can I deal with the shame? •
If people don’t consider you nuts with ADD, why do you have to see a psychiatrist for treatment? Want answers?
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