After the ADHD Diagnosis: Experts Answer Your Top 10 Questions
After an ADHD diagnosis, most people have more questions than answers: Where do I find specialists? What is the best treatment plan? How do I explain ADHD? How do I get accommodations at work or school? Here, experts answer your 10 biggest post-diagnosis concerns.
An ADHD diagnosis often answers some big, life-long questions. Then, it quickly raises new ones: What exactly does this mean? What are our options? Where do we go from here?
ADDitude surveyed its community about the important questions you want, and need, answered after you or your child receives an ADHD diagnosis. We asked experts to provide insights and advice to clear up confusion and illuminate a clear path forward.
1. Who is best suited to treat ADHD, and how do I find a qualified professional?
This is the most common question parents and adults ask. It is a reflection of how few experienced ADHD clinicians there are in the world. A survey done at the Mayo Clinic about eight years ago found that the average parents of children with ADHD consulted 11 clinicians before they found one they thought was well prepared.
For a good outcome, ADHD medication and counseling will both be needed. Medications level the neurological playing field so that the person with ADHD has the same attention span, impulse control, and level of arousal as anyone else. The professionals licensed to prescribe controlled substances vary by state. Physicians and nurse practitioners almost always have this authority. Some states also include physician assistants. But you can’t stop at just medication. The work of helping the whole family learn about ADHD, and helping the person with ADHD deal with the emotional aspect, can be done by psychologists, counselors, coaches, and other professionals.
In short, there is no particular specialty or advanced degree that is intrinsically better able to diagnose and treat ADHD. You are looking for someone who wants to treat ADHD — someone who has been willing to put in thousands of hours of her own time to become skilled at it. How do you find one of these rare clinicians?
- Start by asking friends, family members, parents of your child’s classmates, and members of nearby CHADD or ADDA support groups who they go to and whether they are happy with the care they are receiving.
- Speak to your shortlist of recommended clinicians and ask: How long have you been working with patients with ADHD? What percentage of your patients have ADHD? Have you received any training in the diagnosis or treatment of ADHD? What is involved in the diagnosis—written tests/interviews? Your typical treatment plan — behavior modification, medication, alternative therapies? What are the costs involved? Do you accept my insurance?
- Be willing to travel to get the initial evaluation from an expert in ADHD. Many can put you in touch with a provider closer to home for recommended services.
— William Dodson, M.D
2. Why wasn’t my ADHD diagnosed earlier?
ADHD is no longer considered a “childhood” diagnosis. Since 2014, more adults have been diagnosed with ADHD than children or adolescents. The average age at diagnosis is now in the early 30s. This evolution is due to a number of reasons.
Historically, disruptive hyperactivity has defined the condition, and even now the rowdy little boy comes to mind when ADHD is mentioned. Only a minority of children with ADHD, however, are overtly hyperactive, so the condition often goes undiagnosed.
When the condition’s name was changed to emphasize inattention (in 1980, in DSM-3), hyperactivity was no longer required for the diagnosis. Only then was it acknowledged that girls were equally likely to have ADHD, and that ADHD usually persisted into adult life. But even now, we still do not have diagnostic criteria for adults with ADHD that have been research-validated. Many doctors are unaware that adults can be impaired by ADHD.
ADHD often goes undiagnosed because it carries positive traits as well. Adults with ADHD are gifted in creativity, inventiveness, and out-of-the-box problem-solving. The current term for this is “cognitive dynamism.” Although distractible, when people with ADHD “get in the zone,” they have relentless determination and become deeply engaged in the task they have found to be so fascinating. These people find a multitude of executive function compensations for their ADHD impairments, which allow them to perform at a high level and not be recognized as having ADHD.
Having a supportive family is vital. The most important thing is to have parents who consistently make the distinction between you as a person and the struggles and failures that come with ADHD. They help, encourage, and support the child who must work twice as hard for half as much. Some families can afford private schools, with lower student-teacher ratios and extra academic help. They subscribe to enrichment programs that allow the child with ADHD to pursue things that interest him.
All of these factors delay the realization that ADHD is an unseen cause of life struggles. Ironically, most adults come in for diagnosis due to a success rather than a failure. Some new demand for coping with ADHD occurs, and someone doesn’t know how to compensate any further. From the outside, it appears as if the inability to find further compensations seems to happen suddenly. But in reality it is the last straw that causes all of the executive function compensations, built up over a lifetime, to collapse. —William Dodson, M.D.
3. What are my treatment options aside from stimulant medication?
It depends on the severity of ADHD symptoms and the level of impairment. Stimulant medications are the main treatment for ADHD symptoms — especially when symptoms are significant and impairing—but there are alternative ways to address mild to moderate ADHD in children or adults without using medication. The first step is optimizing attention, executive functions, and emotional self-regulation through psychotherapy, skill training, parent training, or coaching.
The second is creating a healthier lifestyle to promote brain health. Here are some things that help.
- Cognitive behavioral therapy (CBT) can help you understand your symptoms and learn strategies for managing them. There is solid evidence that CBT benefits adults, though some children and teens may benefit as well, especially if there are additional difficulties like oppositional defiant disorder or anxiety.
- Improve sleep by exercising during the day, creating a regular sleep schedule, practicing good sleep hygiene (e.g., not using electronics an hour before bedtime), and/or using melatonin.
- Eat a clean diet by eliminating sugary or processed foods and adding whole foods (the Mediterranean diet is a good option). For some, reducing or eliminating gluten, dairy, or eggs, which can cause brain fog in sensitive individuals, makes a difference.
- Support the brain with micronutrient supplements. If a healthy diet is hard to implement (e.g., picky eating) or if someone is at risk for deficiencies, then adding micronutrients such as zinc, magnesium, or iron can be helpful. Your clinician can help you evaluate for deficiencies. There is also research that suggests that broad micronutrient supplementation helps ADHD symptoms.
- Exercise helps cognitive function and hyperactive/restless symptoms while promoting healthy sleep and stress reduction.
- Mindfulness improves core ADHD symptoms and emotion regulation. The evidence is more robust for adults with ADHD, but there are also studies with children and adolescents. For best results, find a mindfulness resource (app, book, therapist, coach) that incorporates knowledge of ADHD challenges into its training.
If the above strategies prove hard to follow or are ineffective, or if there is a degree of urgency due to failing grades or a risk of being fired, discuss stimulant medication (methylphenidate or amphetamine-based) and/or non-stimulant medication with your doctor. Medication supports executive function skills and health habits, and as that happens, the dose and the overall need for medication can be re-evaluated. — Lidia Zylowska, M.D.
4. How can I tell if the ADHD medication is working? How long does it take to see benefits?
One of the best ways to gauge a person’s progress while taking ADHD medication is to monitor the medication’s effects on the individual’s target symptoms: These are the symptoms that impair the person the most in his everyday life.
With each dosage increase, the person should see improvement in his target symptoms with no side effects — except perhaps for a mild and transient loss of appetite. The dose can be increased once a week or so for children as long as you see improvement without side effects. Late adolescents and adults, who are more observant and articulate about their response to medications, can increase their dose more quickly. At some point there will be no further improvement when the dose is increased. At that point, the previous dose is the optimal dose — the one that produces the highest level of performance without side effects.
- The best way to monitor a child’s taking medication is the Conners 3 Global Index (Conners 3GI). This assessment compares your child’s impulsivity and emotional lability to other children of the same age and gender who do not have ADHD. The index should be completed each week on each new dose of medication by both the parent and the teacher. As long as the score keeps going down and there are no significant side effects, you can increase the dose of medication. When the score no longer improves, you have found the optimal dose.
- Adults can monitor their progress using the Weiss Functional Impairment Rating Scale (WFIRS) –Self Report, which is free and in the public domain.
- The Computerized Continuous Performance Test (CPT) can give an objective snapshot of the effects a single dose of medication has on impairments of ADHD for people from age three to 90. A baseline assessment is usually done without medication, followed by tests on various doses of medication until the optimal lowest dose is found.
The various stimulant formulations are effective as soon as they reach the brain. At one hour after taking the pill, what you see is what you get. A parent of a child with ADHD or an adult who has been diagnosed will see many of the benefits and side effects from medication within 60 minutes. — William Dodson, M.D.
5. What are the short-term and long-term side effects associated with ADHD medication?
The most common group of short-term side effects present as overstimulation. People feel revved up, agitated, have a transitory loss of appetite, headaches, and trouble falling asleep. The other set of side effects are the opposite: A person has no motivation to do anything, loses facial expression and appears flat and emotionless. In many cases, these side effects can be resolved by lowering the dose of stimulant or using another stimulant.
A significant short-term risk from the stimulants or the non-stimulant atomoxetine is their ability to trigger manic episodes in adolescents and adults with a biological predisposition to Bipolar Mood Disorder. (Interestingly, if a person is taking a mood stabilizing medication for their Bipolar Mood Disorder, the addition of a stimulant medication actually lowers the frequency of manic episodes by 60%. Similar studies of atomoxetine have not been done.) Asking a patient about a personal and family history of mood disorders should be part of an ADHD evaluation.
Some adults and parents are concerned about an increased risk of cardiovascular problems due to taking stimulants. Three large epidemiological studies — done by the FDA, following 7 million people — found no increased risk. It is always smart to talk with your doctor about any concerns or cardiovascular diagnoses you have before starting ADHD medication.
The concern about methylphenidate slowing the growth of children has been around for decades and is still unresolved. There are as many researchers who find modest growth slowing (less than one inch below projected height) as those who find no growth retardation at all. Even those who find growth slowing note that there appears to be compensatory growth when medications are discontinued. —William Dodson, M.D.
6. How do I explain ADHD to my child who has just been diagnosed?
One of the more difficult topics to explain to a child, in words they can understand, is that the child has ADHD and that the parents are trying to figure out options. This is a fairly technical discussion, and many parents do not understand the details and science of ADHD. Here are some helpful hints on how to bring up and conduct this discussion:
Think about the conversation from your child’s point of view. What does he need or want to know? What are her natural concerns going to be? This is what your child will remember and what will have a long-term impact on his or her attitude toward having an ADHD nervous system. Use these talking points when discussing ADHD with your child:
- Good news! We have found some solutions to some of the challenges of the past few months.
- This is going to be an extended process. But I will stick with you and be your ally all the way through.
- The whole family is going to learn about this together because you probably got your ADHD from me (or other parent).
- You think differently than most of your friends, but there is nothing wrong with that. You are not broken or damaged. You already know that there are times when you are smarter, more clever, and more fun than anyone you know.
- There may be some medications that can help. We’ll try them and see what they have to offer.
- I am not going to lie to you — you are going to have to work harder than the other kids in your class at school.
- We like you already just as you are. You are not going to be changed into someone you are not. You are going to be the best version of you.
No matter the age of the child, it’s important to remember that the way you present this to him or her is going to be more important than the factual content of the conversation. Tone is key, so aim for a tone that conveys, “We found the puzzle piece we’ve been missing for months” rather than “We’ve discovered that you’re damaged.” Show your child that you are celebrating this discovery because you are no longer fumbling in the dark and that you are excited to move forward together as you both figure things out. —William Dodson, M.D.
7. To what extent does my child with ADHD have control over his or her behavior?
All children past two or three years have some small degree of control over their behavior. Behavior is influenced by many factors: a child’s degree of intellectual development, the presence of developmental disorders, such as ADHD, and situations that have some motivating impact on them.
All of this is to say that there is some control that children have over their behaviors based on their age and level of development. This is also true of children diagnosed with ADHD, which is a disorder of self-regulation (and the executive functions that allow for it). This is why clinicians suggest parent training programs and school management strategies in an effort to alter a child’s behavior.
Children with ADHD are well below neurotypical children in their range of self-control and their level of development. They cannot be expected to become like other children simply by arranging additional consequences or training them in self-regulation. They can improve, of course, in terms of controlling their behavior, but they are unlikely to catch up.
ADHD medications can temporarily help with self-control. In half or more of the cases, medications can normalize behavior in those with ADHD while it is working in the brain each day that it is taken. But parents should understand that those behavior changes are not permanent. They last only as long as the medication is active. — Russell Barkley, Ph.D.
8. How do I get an IEP or other accommodations to support my child in school?
A note from a pediatrician is not sufficient to get an IEP or accommodations for your child. The school needs to know if and how ADHD affects your child’s school performance. It is also important to determine whether there are other reasons why your child is struggling; ADHD often occurs together with learning disabilities.
Step 1. Speak to your child’s principal or guidance counselor and make a formal request in writing to the school to evaluate your child for attention and learning difficulties. This evaluation can give you and the school the information needed to confirm what might be going on with your child in terms of learning challenges.
Step 2. The evaluation will help you and the school understand whether your child’s difficulties are severe or relatively mild, whether they are limited to attention or also include learning disabilities, and whether they can be helped by accommodations only, or whether your child also requires specialized instructional support.
Students with serious ADHD, or with ADHD and learning disabilities, likely require services and supports under the Individuals with Disabilities Education Act (IDEA). To qualify for this federal law, students must have a disability and require special education.
Step 3. If your child needs the supports provided by the IDEA (beyond just accommodations), make sure your school begins arranging an IEP (Individualized Education Program) for your child. You are part of the team that puts together the IEP.
Step 4. If your child doesn’t need the more extensive supports under the IDEA, he will likely qualify for accommodations under Section 504 of the Rehabilitation Act. This law entitles students with disabilities, including ADHD, to accommodations to enable them to function as well as possible in the classroom. —Susan Yellin, ESQ.
9. What are the long-term outcomes of ADHD?
Any child or adult with or without ADHD has many factors influencing long-term outcomes in his or her life. These include the effects of inherited traits, intelligence, health, quality of parenting and family life, sibling interactions and friendships, quality of education, and many other things over a lifetime.
There is no one outcome that comes from having ADHD. Many with ADHD are regular kids who function well in their family life, in their studies and social interactions throughout their schooling, and in eventually developing a career and adult life, despite some chronic difficulties with restlessness, inattention, and relationships. Over the course of more than 30 years of practice, I have known many children with ADHD who have grown into adults who have had successful, happy lives.
Yet many children with ADHD struggle in school, as well as in social relationships, because of their inattentiveness, restlessness, and impulsivity. Many are inconsistent in their motivation, especially when faced with tasks that are not interesting to them. This may result in chronic frustration and discouragement in their schooling, family life, and social interactions because ADHD is not just a problem with behavior, it is an inherited problem with executive functions.
Getting accurately diagnosed and receiving appropriate support and treatment can make a positive difference in a person’s long-term outcome, even if his diagnosis does not come until he is in mid-adolescence or beyond.
Treatment Leads to the Best Outcomes
For those who do not receive adequate treatment and support for their ADHD, there is a significantly increased risk of problematic longer-term outcomes, such as weaker performance in school, difficulties in employment, more risk of involvement in a motor vehicle accident, and significantly increased likelihood of developing a drug or alcohol disorder. Effective treatment makes a positive difference in the outcome of those who struggle with ADHD. — Thomas Brown, Ph.D.
10. What are the biggest risks associated with untreated ADHD symptoms?
Virtually all of the risks of ADHD come from not treating ADHD aggressively with a commitment to long-term management. To get an ADHD diagnosis, there must be impairment in at least two areas of life functioning — at home, at work, at school, in relationships, etc. This is an easy criterion to meet because ADHD impairs just about every area of life functioning.
Parents worry constantly about their children. Will they be safe? Will they have friends? Will they stay out of trouble with drugs, pregnancy, and juvenile justice? Will they marry happily and be able to raise children who will thrive in the world? Untreated ADHD makes all of these less likely, but early- and long-term treatment lowers the following risks dramatically:
- Driving accidents: Young adults with ADHD are at a 45% greater risk for car crashes than those who do not have the condition. However, research shows that around 22.1 percent of possible crashes were prevented by the use of ADHD medications.
- Academic failure: Most people with untreated ADHD do graduate from high school, but adults with ADHD earn approximately 17% less than their peers without ADHD.
- Substance abuse: People with childhood ADHD are nearly twice as likely to develop a substance use disorder as are individuals who don’t have childhood ADHD. However, the risk of substance abuse decreases substantially when patients are treated with stimulant medication.
- Trouble with the law: Teens and adults with ADHD are four to seven times more likely than those without the condition to break the law, but are much less likely to commit a crime if they are being treated with ADHD medication.
- Suicidality: Nearly one in four women with ADHD has attempted suicide, according to Canada’s Archives of Suicide Research study, which found that adults with ADHD in general are five times more likely to attempt suicide than are their neurotypical peers. Luckily, other research has shown that suicidality in children with hyperactivity, oppositional defiant disorder (ODD), and other behavioral disorders may be decreased by ADHD medication.
- Relationships: Some studies suggest that the divorce rate among couples touched by ADHD is as much as twice that of the general population. — William Dodson, M.D.
ADHD Diagnosis Questions and Concerns: Next Steps
- Download: Free Expert Overview of Common ADHD Diagnosis Mistakes
- Symptom Checker: Could Your Symptoms Point to a Diagnosis Beyond ADHD?
- Understand: The Building Blocks of a Good ADHD Diagnosis
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Updated on July 22, 2021