ADHD Q&A
l often talk about ADHD and autism together because that is the world my family lives in. I have ADHD and my daughter is autistic. I did a Q&A with the common questions I get asked so I wanted to share that with you. Generally, an autism or ADHD diagnosis is hard to get. The process, the doctors, and the barriers in place make it not easy to go through. My hope is to share our experiences to provide information to others who are in the process, starting the process or thinking about the process while also giving realistic expectations!
ADHD Q&A | Intro
I have family members who were diagnosed with Autism and ADHD later in life. My mom and aunts fought for diagnoses for my generation, getting diagnoses for themselves in the process. In doing so, they paved the way for us to advocate for our children and help our children get early intervention because we know what to look for, especially since both ADHD and autism are genetic. I know that is not the general experience, but my mom and aunts fought for what their kids needed. It took 19 years of doctors telling my mom there was nothing wrong with my brother, including the head of neurology at Children's Hospital in DC before anyone even brought up autism. In fact, it was a family friend who suggested it, not even the doctor he was seeing at the time. The doctor was embarrassed she missed it, but she did the evaluation. I was diagnosed with ADHD within a year of that. For Jackie, we had to go out of state to get on a waitlist for her evaluation that was less than a year, and we still waited 8 months.
There are not only social and economic barriers in place, but there are still people in the medical community who believe really antiquated ideas about autism. For example some believe autism is created by certain parenting styles or that it doesn't exhibit in women. Many autistic people have a hard time finding trusted professionals who can actually provide a diagnosis or any kind of therapy. It is not uncommon for autistic women to be misdiagnosed with a personality disorder or bipolar. 24% of women with ADHD attempt suicide and autistic women are 13x more likely to die by suicide than woman who are not autistic. Sit with that for a bit.
One of the reason these rates are so high is because there is a lack of support, access to care and professionals AND the general public believing it's not an actual issue. Many women are being diagnosed with both ADHD and autism later in life because they have historically been considered issues that only impact men. Women just weren't studied or acknowledged. These are important things to talk and educate yourself about. Because there are no medical treatments for autism and very few therapies for autistic adults, self-diagnosis is very often a route many are forced to take. Self-diagnosis is very real and valid, you know yourself and your child best! It is also difficult to get an ADHD diagnosis as an adult, but not as difficult. With ADHD, there are medications that can be used for treatment that require a medical diagnosis.
ADHD Q&A | How can you get an evaluation for ADHD or autism if you think you or your child may have it?
For adults:
Make a list of your concerns. Try to think of things you do that you have noticed might be different than others around you and things you struggle with. Be VERY detailed. Take this list to your doctor and discuss them. I was originally diagnosed by a psychiatrist, but I've also seen a primary care doctor and a neurologist for my ADHD. I personally liked seeing the neurologist the best considering they're a brain doctor and ADHD and autism are brain issues. There are psychologists and other therapists who can do an evaluation. Check with your insurance to see what's in your network. If a doctor will not listen to you and take your concerns seriously, seek a second opinion. Be prepared to fight and advocate for yourself.
For children:
You have 3 options:
If your child is under the age of 3 you can take them to be evaluated by the county you live in. While this may not still be enough of what your child needs, it's a starting point. Part of the reason we moved from Virginia to Tennessee was because even though our county in Virginia categorized Jackie as autistic and placed her in a special education preschool class, they did not deem her eligible for any other services (speech, OT, PT). Be prepared to advocate and push for what your child needs.
If your child is over the age of 3, you can request they be evaluated by the county or school district This is a slightly different process and varies from county to county and state to state. Educate yourself on you and your child's rights. You can even look into hiring an advocate or some school districts provide parent advocates.
You can get a medical evaluation. The wait lists are long and it can be soul crushing, but it is possible. Decide how far you are willing to drive and work with your insurance to find a provider who will cover an evaluation. 47 states have mandates requiring insurance to cover evaluations for autism. Once you are on a wait list, be the squeaky wheel. Call for cancellations. ADVOCATE.
If you are in the SouthEast, I can't recommend Siskin Institute enough. They strive to have shorter waitlists, they continue to hire providers, their providers are AMAZING and I do know two of their doctors are fluent in Spanish! We have felt so loved and supported by our Siskin community. Their goal has ALWAYS been supporting Jackie and getting her the accommodations and supports she needs. She has graduated from preschool and 3 therapies (ABA, Speech & Feeding) from Siskin. Their goals for her were always to help her get to where she didn't need them anymore. They also do more than autism diagnosis/treatment as well. They serve children with a wide variety of developmental conditions including: autism, ADHD, speech & language delays/impairments, motor delays and impairments, down syndrome, learning disabilities, intellectual disabilities and more.
ADHD Q&A | What does ADHD feel like?
It's exhausting. Some days are better than others and my medications help A LOT. However, each day is a battle over something. ADHD is more than not being able to focus or getting easily distracted. There is so much more to it. For example, today I have a lot to get done and everything I need to get done today is a high priority which makes it really hard for me to prioritize tasks. I've spent so much time agonizing on what to get done first that its becoming hard to get anything actually done. I'm even on my meds today and I'm still struggling. I usually have to find a way to either just start, usually by picking the thing that I'm most interested in doing, or incentivizing myself to get it all done as fast as possible with a treat and a self-imposed deadline. My brain is always trying to chase the dopamine that I'm lacking. I've seen this graphic going around that helps explain it a bit more.
ADHD Q&A | What are some of the genetic aspects of ADHD?
Studies are showing that ADHD is definitely genetic. If you as an adult have it, there is a 35% chance your children will have it. This jumps to 50% if both parents have it. If children have it, there is a 50% chance one or more of their parents have it. They are also finding a genetic connection between a mom having adhd and having autistic children.
ADHD Q&A | Do you take meds, if so what are they?
Yes! I've been on meds since I was 16. I didn't take them while I was pregnant with Jackie and I was terrible about taking them in college, BUT I've taken them very consistently outside of that and have made it a priority. Right now I'm on MyDayls which is made by the same people who make Vyvanse. I took the same dosage of Adderall for 10 years but found it wasn't working well after my hip surgery. I worked with a neurologist to find a med that would work for me. We went through about 4 different medications and a few dosages to get to where I am now.
ADHD Q&A | Do you have any other coping mechanisms besides medication?
Yes! I use timers & alarms, self-imposed deadlines, incentives, find ways to stay organized, talk to other people about it and most importantly remember to give my self some grace.
ADHD Q&A | What does the medication do for you?
The best way I can describe it is that it "lifts the fog". Sometimes, people who don't need ADHD meds think people with ADHD take these meds so they can get stuff done by being on "speed". That couldn't be further from the truth. While the meds I am on are a stimulant, they don't give me energy or make me do anything. My meds lift the fog that ADHD creates in my brain. They make it easier to sift through the to-do lists and life tasks so I can prioritize them. They help stabilize my mood. I'm less irritable and slower to lash out.
I'm happier in general and can actually put what I am thinking into words. My relationships are better, I'm more understanding. One of the biggest things my meds help with is my anxiety. I have situational anxiety which means my anxiety isn't a daily thing necessarily, but it can be triggered unexpectedly. ADHD and anxiety can kind of mask as each other sometimes so my meds help manage my anxiety too.
ADHD Q&A | What are some tips for helping kids who struggle with impulse control?
1) Give them controlled access to the things they are struggling with, or completely remove it from the home. For example, I had an issue with eating constantly as a kid. It wasn't that I was hungry, I would just eat when I was bored. Now I really limit what kind of food I have access to in my house. Being gluten free helps because I can't eat as many things as I did when I didn't know about my wheat allergy.
2) Trust them but also verify. I had serious impulse control issues as a teenager. Luckily | had a great group of friends, but was often lying about nothing to my parents. Sometimes I would lie about things that I wouldn't have even gotten in trouble for. However, I knew my parents were often checking on me, like if I was I actually where and with who I said was, and they made it a point to know my friends’ parents. Having grown up in an area where my parents and grandparents grew up, LOTS of people knew me. I knew if an adult saw me in public, my parents would eventually hear about it, because the other adult would inevitably mention it. Knowing trusted people were checking up on me helped with some impulse control. Also knowing they had monitoring software on our devices was good. Kids have even more access to the internet and scary stuff now than I ever did so being aware of online access is so important as well.
3) Discuss and decide consequences together before they are ever in trouble. If your child knows this certain thing is an issue for them, which you should discuss with them, it's something they can work on. If together you decide on an appropriate consequence, they will A) feel more motivated to not make the mistake and B) be more accepting of the consequence when they are necessary.
ADHD Q&A | How does ADHD impact work?
It took some time, but l've discovered that I do best with project-based work. When I organized conferences, I thrived. Doing DIY projects, I thrive. I have a project to hyper-fixate on and then when l'm about to get burnt out, I'm just about done. It works pretty well with my ADHD.
ADHD Q&A | Don't we all have a little ADHD?
No. People with ADHD have different brains than people who do not. Our brains literally are wired differently. Being easily distracted or fidgeting doesn't mean you have ADHD. Also, saying everyone has ADHD minimizes those of us who do and actually can impact access to diagnosis and treatment. Just as you would take anxiety, depression, bipolar, etc. seriously, please take ADHD seriously
ADHD and autism are NOT over-diagnosed. In fact, studies are finding they are both under diagnosed due to perceived social stigma associated with it. The world we live in isn't designed for ADHD and autistic people which is why support and accommodations are so important. I hope that one day ADHD and autistic kids will be celebrated. I hope that with talking about it more, our needs will be supported and people will see advocating for access to care and supports as extremely important issues. Until we do, we have a large group of intersectional people that are being ignored. Please remember, I'm not a doctor, I'm just speaking from personal experience so reach out to your physician if you think this is something you may struggle with too.
