Autism

There is almost no information on being both autistic and ADHD and it’s time we changed it.

When I got my autistic and ADHD diagnosis, I went to search for information about both of them. It inevitably led me to a question — what happens when autism and ADHD coexist in the same brain? How do they influence each other? Do they enhance some traits? Do they mask some traits? I learned that AuDHD people often don’t identify with the experiences of just autistic people, or people with just ADHD. We are different, but how?

Being the bookworm I am, I turned to Amazon. But I was disappointed. To the date of writing this article, there doesn’t exist any single book about AuDHD that I could find. I hope some neuropsychologist will see this lack of relevant information and rectifies the situation soon. But in the meanwhile, we have only each other to learn from. To compare our experiences and try to work out what makes us tick. Find solutions to our specific problems. Find out what those problems even are.

We often suffer without even knowing that we have stressors in our life that we could mitigate or remove completely, that we can adapt our life to suit our needs and not the other way around, because we look at neurotypical people and try to be like them. And when we get our diagnosis, we look at autistic people and try to be like them. And the same with people who have ADHD. We can learn something from both of these groups, but we don’t fit among them. We are something slightly different. And nobody helps us understand ourselves as we are.

Nobody helps us to understand how to make our lives easier for us. What helps with autism can go against our ADHD needs and vice versa. ADHD medication can bring out the autistic traits. Autism can mask ADHD, or ADHD can mask autism. How to find some sense in this puzzle that is our neurotype? And yet I believe that if we understood our brains more, we would find the way.

The biggest problem for me is that we don’t understand ourselves enough. Especially those of us who are late diagnosed. There is no one to tell us how being autistic and having ADHD at the same time work. Autism can pull us in one direction, and ADHD in the exactly opposite one. The autistic side of us gets overstimulated, while the ADHD side is understimulated. They fight each other inside our brains.

We don’t fit in the autistic box. We don’t fit in the ADHD box. We barely have psychiatrists that are educated in one of those conditions, but both? No chance. 

So we look for information on autism. We look for information on ADHD. We experiment and try and discard solutions and find new ones. We record our experiences to help others like us make sense of their brain. And we try, try, try.

Did you know that there is only one Facebook group for people who are autistic and have ADHD? A single one in the sea of all the neurodivergent groups that crop out like mushrooms after rain. And don’t take me wrong, those groups are useful. I visit a lot of them. But there is only ONE group for AuDHD people. And one with very strict rules about what could be posted there.

I learn about myself by seeking information. But every single question I asked in that group was declined. “Research” questions are not allowed, even if that is the only way how I can understand myself better. I don’t want to talk badly about this group, I’m glad that it exists. But it isn’t one I can feel at home at. So I decided to create another one. Yes, now they are two AuDHD groups in the whole wide Facebook lands! 😀

You can find it here: Exploring AuDHD.

All AuDHDers are welcome in this group! Please, join only if you are BOTH autistic and have ADHD. I apologize to all autistic and ADHD and other neurodivergent people — but we need a space where we can connect with people like us, so we don’t have to search for the lonely voices amidst the sea of neurodivergent people. 

The group is meant primarily for education, so feel free to share your blog posts, Facebook pages, Youtube videos, and any other forms of information about AuDHD and life with it. But even if education is the focus of the group, seeking support is allowed too. You can come here to talk about every aspect of life with AuDHD. Come, and make yourself at home!

I will be waiting for you there.

I didn’t know I was autistic or had ADHD until adulthood. Then I was diagnosed with both at once. I went for the assessment for autism and got two diagnoses for the price of one.

The autism I kind of expected, even if I debated with myself for years if I can be really autistic, or if I’m just making it all up. Ironically, It didn’t occur to me that I could have ADHD – but when I got the diagnosis, I thought “Huh. Of course. That totally makes sense.”

I accepted my ADHD side immediately. I still haven’t found my peace with the autistic side. I have a problem identifying with it because of my internalized ableism and outdated stereotypes of what autism looks like that still somehow live in my unconscious mind. I have autistic imposter syndrome. I’m having trouble accepting autism as a part of my identity.

The ADHD side wants to live to the fullest… and the autistic side is holding her back

For me, the ADHD side represents my ideal self – adventurous, bold, friendly, outgoing. She is the person I want to be. She longs to live the life I yearn for: having adventures, cherishing new experiences, connecting to all kinds of people and making friends, and living every moment of life to the fullest.

I feel that my autistic side is keeping me back from this all. She is easily overwhelmed. She has problems with new environments and new things. She is easily exhausted by human contact. She craves routine and is unsettled by the lack of it. No matter how adventurous I feel, I have to always, always keep in mind my limitations. And that rankles. I despise them. I want to be free.

I follow the adventures of various people who travel a lot, hike in nature a lot, do new and interesting things a lot, and I feel like they are somehow living MY life, the life that should belong to me, the life I always imagined I would have. This is one of the most terrible feelings I know.

And now I know I would probably never have that kind of life. But I can’t make myself let go of that dream – not yet. So I just silently suffer and feel like I’m not really myself. I haven’t felt like myself for years.

Oh, the adventures I had… Until I didn’t.

When I was a teenager, I happily jumped on whatever opportunity for a new adventure that came by. I went on a skiing trip designed to bring together able-bodied and disabled children and I got lost in a snowstorm with two of the other girls. I went planting trees with an ecological organization. I was the youngest one there and had to be helped home by one of the older guys because I got a fever.

I went on a horse camp that went terribly wrong (read: exciting) as we had to move from the campsite that somehow wasn’t paid for into an old house that was falling apart. We smuggled food leftovers to a scrappy dog that lived there and were enjoying ourselves. At another horse camp, they just sat me on a horse and started galloping – so I learned how to ride a galloping horse while doing it. At first, I clung to him for my dear life, but by the end of the camp, I was riding with my back straight and a smile on my face.

One summer, I went to a Shaolin-themed camp (by another ecological organization) which was one of the best experiences of my life. They did things like gather us in the middle of the afternoon to tell us that we are to go away for a weekend in groups of two or three, and we can bring only 5 items for a group in addition to what we had on our person. No money was allowed. We had to complete a list of tasks in various villages and towns around the campsite. I went with two of my friends.  We hitchhiked, we slept on a train station bench and ate fruit that fell from trees. I had the time of my life. 

When I came home from one of the weekends spent in such a fashion, my friend from school remarked that I somehow seem taller. I felt taller. The world was my oyster.

I don’t feel like myself anymore

And all that time, I was suppressing terrible anxiety and wondering why I’m always more tired than everyone around me. As the years went by, my reserve of strength and willpower ran out, and suddenly, I couldn’t go on adventures anymore. And I stopped feeling like myself.

I have yet to go backpacking in a foreign country. I have yet to go on the pilgrimage to Santiago do Compostella. I have never seen the total eclipse of the sun, never been on another continent, never slept in a desert with a sky full of stars. I have so many dreams that I’m not any closer to fulfilling and I’m so frustrated, so sad because of it.

The autistic side and the ADHD side of me are in a constant battle over the way I should live.

Other people can prefer their autistic side

I know of some people that have it the other way around. They want nothing to do with their ADHD side and feel much more comfortable in the autistic one. One person said to me that he got into so much trouble because of ADHD. He was on the verge of big legal and financial problems when he started being treated for ADHD, and it felt liberating for him. His autistic side is the one that keeps things in order and organized. He likes it a lot.

I’m learning to love and accept autism as a part of myself

When I was speaking about this to my therapist, she suggested that I make a list of the positive qualities my autistic side has. And I found quite a few. For example, she helps me to get enough rest. I would never stop and be still without her. I would burn out so quickly! She can keep my things organized. (Well, mostly.) She grounds me. She is the one that loves reading and immersing herself in imaginary worlds for hours, which is my favorite activity.

Of course, the attributes I assign to my autistic and ADHD side aren’t necessarily directly caused by autism or ADHD. That is just my interpretation of them. My autism and ADHD both live in the same neurodivergent brain and are so intertangled that there is no separating them.

I can’t change who I am – but I can change if I love myself or not

I have come to realize that I’m ALL of this – ADHD, autistic, a woman who wants to live an adventurous life and who fears it at the same time, someone who is a passionate bookworm, who goes for walks daily, who likes writing, and who thinks poodles are the best dogs ever. All of this is me.

I now strive to accept all my sides. After all, I can’t be anyone else than whom I really am. I don’t want to struggle for the rest of my life with things that I find difficult to accept about myself and miss out on how they can enrich my life.

I want to love who I really am.

***

What about you? If you are AuDHD, do you prefer your autistic side or your ADHD side? Or do you like both of them? Neither? Share it in the comments!

It hurts. The stream of water hits my small body and I shrink in myself. I hear the other children, shrieking with laughter. Are they having fun? I’m suffering. But I must endure it. It doesn’t occur to me to just step aside, to run away, as the teacher in the pre-kindergarten sprays us with water from the hose in the hot summer. 

It blinds. The light is too bright, too much. I squint, trying to see, my eyes full of tears. I stand rooted in place, blinded. Mercifully, one of the teachers notices my struggle and lends me a pair of sunglasses from a kid younger than me. The brightness stops. I breathe out with relief.

It calms me. I’m standing alone, facing the corner, in a room full of children. I’m dancing with my imaginary friend. I’m not interested in the children. I’m content. 

The signs were there from the beginning

In retrospect, it should have been clear. I was a quiet, bookish child, but I often had what my parents called “tantrums”. I was at the same time too adult and too childish for my age. I was too obedient, taking things too literally. 

I was so picky with food that when my mum asked me, slightly desperately, to write down my own meal plan for the weak, I wrote “eggs” and “potatoes” over and over for every day.

I walked through the preschool with my hands balled in fists, a gesture that nobody at the time recognized as a sign of deep anxiety. I didn’t talk much to the other children. I think I was afraid of them. I never picked the “good” toys. Instead, I was waiting for what would be left.

Everybody remarked how similarly I behaved as a child as later my little autistic cousin did. But in my childhood, in a newly democratic country that was still recuperating from long decades of communism, “women couldn’t be autistic.”

The psychiatrists didn’t find out I’m autistic. My aunt did.

The first person who had any suspicion was my aunt, who has an autistic child and is autistic herself. Not a single one of the small army of doctors and therapists that surrounded me from my early teen years when my mental illness broke out of control and nearly killed me had a clue.

They showered me with psychiatric diagnoses, but they weren’t the right kind of diagnoses. I went through two months-long psychiatric hospitalizations, and still, the person who “diagnosed” me with autism was my aunt. She sent me an article about how autism can manifest differently in women and how it often goes unrecognized.

At first, I was hesitant about the whole idea. I was very, very careful of thinking that I could be autistic because I discovered that in a corner of my soul, I was scared by how much I wanted it. 

It would mean that it wasn’t my fault. That I could stop blaming myself for the many things I lived in shame of for my whole life. That my social awkwardness, lack of understanding, all of the cringey moments weren’t my fault. That many of my psychiatric conditions may simply result from an environment that doesn’t accommodate differences. 

I could forgive myself for being different

Autism is invisible, but it isn’t intangible, like anxiety and depression. It’s a physical handicap, a physical difference in my brain from the brains of other people. At the time, I thought of it as a disability that in my eyes was not much different than someone missing an arm or a foot. If I knew I had a real, physical handicap, I could go much easier on myself. Now I realize that my brain isn’t disabled, just different – with its advantages and disadvantages.

Because I wanted that convenient label so much, I was very hesitant about claiming it. To me, for my whole life, I was “normal”. Yes, different from the others, but normal for me. Now I had to dive into a deep rabbit hole of my oddities and try to see things that I would rather not. I didn’t want to think of myself as “weird”.

Autistic imposter syndrome

I didn’t think autism really belonged to me. I didn’t want to appropriate the condition. I thought that perhaps I just wanted to be autistic because it would absolve me of my many shortcomings. This kind of thinking is called “Autistic imposter syndrome”.

I was also afraid that from the moment I was diagnosed, if I was diagnosed, I would try to avoid things that hurt, uncomfortable things, “because I’m disabled”. I was scared of losing my drive for overcoming. 

And there was also a dream to mourn. A dream that one day, in the future, I would be cured and as healthy and able as anybody around me. Because if I was autistic, there would be no cure.

A surprise ADHD diagnosis

It took me years to finally decide to get diagnosed. I applied to the best institution in our country. I was lucky that I have been able to pay for it then. They sent a lot of questionnaires, and interviewed my parents, my boyfriend, and finally myself. And then the verdict came: Not only I’m autistic, but I also have ADHD.

38 years of my life and I was finally holding the beginning of the answers in my hands.

But… people don’t really know what autism is

The diagnosis hasn’t been the all-absolving solution I hoped for. Shortly after finally getting diagnosed, I realized that telling people that I’m autistic won’t help me much. Because pretty much nobody around me understands what that word really means.

One of my friends said to me, hesitantly: “But I thought autistic people lack empathy, and you are the most empathetic person I know.” Contrary to popular opinion, autistic people are empathetic – in fact, we can even be hyperemphathetic, which is my case. I can’t even watch a sitcom because the humor is based on the premise of unpleasant things happening to people.

I decided that when I need to communicate something related to my autism, I will concentrate just on the relevant part.

“The music is too loud for me. Could you please turn it down?

“I need to be alone right now for a moment.”

“I can’t recognize and remember faces very well, so it’s very likely that we will introduce ourselves to each other several times until it sticks.”

I reveal the whole picture only to the people I trust – and to the people I fear. People who could make my life harder if they didn’t know there is an actual reason behind my odd behavior, however skillfully masked.

The benefits of being diagnosed

But am I glad I got diagnosed? Definitely. I found a community in various Facebook groups – and information. Coping strategies, advice, the feeling I’m not alone in this – all amazingly valuable things.

A few of the Facebook groups that I love are Autism Late Diagnosis/Self-Identification Support and Education, Neurodivergent Cleaning Crew, and Neurodivergent Cooking Crew. I also like to read Facebook pages like Diary of a Mom, who has an autistic daughter and is one of the gentlest beings that walked this Earth, Neurodivergent Rebel, NeuroWild, or young autistic advocate Summer Farrelly. Youtube videos, for example How to ADHD or Purple Ella’s videos on having both autism and ADHD are also very helpful.

The unexpected diagnosis of ADHD that I got along with the autistic one helped a lot too. Being autistic with ADHD can be a complicated thing, because the traits of both diagnoses often clash, making you a study of contradictions. The advice that helps just autistic people or just ADHD people may not suit you very well. But I could see now how much of my behavior is influenced by ADHD and I learned to understand myself much better.

I also got much better at forgiving myself. It turned out that while there isn’t a cure for autism or ADHD, the diagnosis itself can be a cure for self-hate. For the pressure that I was always putting on myself, for all the things that didn’t allow me to relax and just be myself. I didn’t lose my drive – the drive just got a different direction. I got a lot better at accepting myself as I am. And that’s what really matters.