Sunday Interviews: The second in a series of interviews with autistic adults

I am doing a series of Sunday interviews with autistic adults because their voices and opinions are so important. Hopefully the interviews will raise some awareness and understanding, as well as give parents of children with autism some insight from the answers.

I will not be editing the answers people give me as I feel it is important that the interviewees own views and feelings are shown. Every individual will have had a different experience.

The people interviewed have been extremely brave to do so and the answers are about their own lives and opinions.

---

How old were you when you were diagnosed and do you remember being told your diagnosis?

I was diagnosed when I was 38, just after my daughter was evaluated. She was 5 or 6. I do remember feeling incredibly validated and relieved once I heard it, sort of an “AHA!” moment.

How did you find home life as a child?

Tumultuous, confusing as hell. Nobody knew about Asperger’s back then, at least not in small-town, rural Georgia. Everything was confusing, and everything that didn’t produce conformity was punished as defiance. I was told so many times, “You’re intelligent, there’s no excuse for you to not understand this.” Whatever ‘this’ happened to be.

How did you find school as a child?

Lots of fights, bullying. I felt defenseless, and so I defended myself, but when I did that I was labeled a troublemaker because the other students were able to twist the truth and hide what they said or did. This extended to teachers as well, one in particular who seemed to take great delight in publicly humiliating me for any deviance from her strict order. I still remember what she looked like, her name, and what happened.

What challenges did you have to deal with as a child?

Not knowing how to handle changes in routine or any type of surprise. I’ve written about one particular instance, involving a chair when I was in the 4th grade. My best (only) friend, in the neighborhood, brought her little sister to visit the classroom, and she sat in my chair. They moved mine. Mine squeaked, was uneven and had a scratch on one corner. I knew it was *MY. CHAIR.* I had been told time and again to stay in MY. CHAIR., so when my chair was gone, I had to have it back, or I knew I would get in trouble. I had no concept of flexibility, and nobody ever explained it to me. No one said “It’s okay, you can use a different chair, it’s not the actual object that matters, it’s the seating arrangement that is important.” I had a huge meltdown, wrestled this poor 6 yr old out of that chair, and I was punished for it. Not a shining definable moment in my life. But distinct in my memory as I look back and can tell that it was absolutely a hallmark of autism to be so literal and unable to separate the instructions for staying in my assigned seat to assigned object.

Did your parents do anything for you when you were younger, that you really appreciated?

Not really. I don’t want you to think I blame my mom in any way; she did the best she could with what she knew. She was very young when she had me, still mostly a child herself, and then was a single mom shortly after. Without having any support for neurodivergent children like me, she followed the advice of all her older siblings and other officials who were supposed to know best. It made life pure hell. I think if it had been just us two, we could have figured out a solution together, but that’s both the beauty and curse of large families, right? Someone else always is in your business, and someone always “KNOWS. BEST.” She didn’t listen to me, because other people were telling her something different, and the mentality back then was “you’re a child, you can’t know anything. You have to listen to your elders.”

Do you live independently now?

It depends on how you define the word independently. I live alone in a house with my daughter, but I am not really independent. I could never raise her on my own without some support. And to be honest I have a lot of it. My ex-husband, his parents, even a teacher at my daughter’s school, have all stepped up and helped a lot. In fairness, before the diagnosis, I’d have never asked for help. Knowing what I feel challenged by has allowed me to know it’s okay to say “I am not okay. I need help.” And people step up when they know.

What challenges have you had to deal with as an autistic adult?

A lot of the same, really. I have gotten better at knowing some social cues, and how to respond, but they are more of a memorized bag of replies I keep in my head for any given situation. When I face an unknown, I stammer, forget words, struggle with speech. I get embarrassed and then often leave, just walk out, humiliated.

What do you like about being autistic?

I notice details everyone else misses. I can spot patterns of behaviour in people, and I’m rarely wrong once I see it. I am blunt, direct, and brutally honest, even if it means I get in trouble for something. I am empathetic, and this makes me a good caregiver, I think, especially when dealing with other disabled people or children. I sense pain and can adjust myself to accommodate it without making someone feel like a burden, an object of ridicule. I don’t like talking so people tell me I’m a great listener, ha. I am a rule-bound person, which is perfect if you’re in quality control, security, or something of the sort where there are strict policies.

What do you dislike about being autistic?

Details. My strength is also a weakness, depending on the circumstance. I get bogged down in those details, hence the saying “The devil is in the details.” It is difficult for me to see the larger picture, to step back and find a different perspective. The sensory onslaught. Forks on plates, loud bass music in cars, fluorescent lights. I do wish I wasn’t so hypersensitive to things that don’t seem to affect other people. I can be inflexible because of it which isn’t so great if you’re in a job where that’s required. Half of my daughter’s teachers and certainly her principal can’t stand me because I can get stuck on their words and they feel like I’m attacking them when I am just trying to gain clarity. Say what you mean exactly and don’t prevaricate. I need detail like oxygen.

Is there advice that you would give a parent bringing up an autistic child today?

Slow down. Breathe. Keep in mind these things take a LOT longer than you want them to. Celebrate every victory, no matter how small you think it may be. Remember always that this is who they are, and they cannot change their neurotype, but you can change your perspective. How you see them and their behaviour will affect how they see themselves and will in turn affect their progress. Kids are such remarkably resilient creatures. They want nothing more than to make us proud, to gain our approval, and feel innately that they must earn our love. It takes a ton of reinforcement to assure them that they don’t have to earn that by good behaviour, to learn that they have it already by being your baby. Explain in great detail, every single step, don’t leave anything out, because that one missed step will trip them up every time. And it may be something you have to explain 150 times before it sticks, then reminders every so often. I am fully convinced some challenges in life are meant to teach us patience.

Is there anything else you would like to add?

Neurodiversity is a gift. It gives us a brand-new way to view the world, and all its wonders. Forgive yourself as a parent if you lose your shit once in a while, but also apologize and explain why it happened to your child. They’re a lot more perceptive than you give them credit for, and even if they’re too young to understand that explanation ‘right now’, they will eventually, and they’ll still remember the kindness you gave by explaining. This fosters trust and that is going to be your biggest ally as you raise an autistic child. Kids who know they can trust their parents always do more, learn more, faster, and more in depth than their peers.

Remember this is a marathon, not a sprint. If your child needs a tablet to communicate, get one. If they never learn to tie their shoes, this is not life threatening. If they only eat chicken nuggets until they’re 11, so be it. It’s not the end of the world. Get gummy supplements. These are little things, and don’t matter in the great scheme of it. Be your child’s BEST advocate. Don’t grill them if they get sent home with a note about “bad” behaviour. Demand better explanations from teachers and investigate everything. Ask the hard questions. What was happening before this incident? Who was involved? Has there been a history of friction between these students before? Was anything changed without warning? Did the teacher give clear, unequivocal, step-by-step, explicit instructions? Why not? Was the IEP/504 followed to the letter? Autistic kids don’t act out without provocation. There is always an explanation, be it a physiological response to stress (crying, meltdown, aggression, violence), sensory overload, bullying, confusion, etc.

Focus on what they can do, rather than on what they can’t, because that ‘can’t’ will change over time. It may take a lot longer, but it is possible, with the right support and lots of it.

Lastly, respect the stim. However much their humming, flapping, singing or rocking may annoy you, it’s still not something they can control, and they should not be forced to control it. It’s an involuntary reaction to stimuli. You however, can control your reaction to it, and your reaction will dictate their level of comfort. Autistics can sense vibrations and every emotion has its own unique vibration of energy. We know when you’re annoyed even if your words don’t match up. And it affects us deeply.

---

If you would like to be interviewed for a future Sunday interview post, I would love to hear from you, no matter what your opinion or experience. You can contact me for a list of questions at star@autismkidsontour.com or via inbox to my Facebook page.

Thank you for taking the time to read this post. Please feel free to follow my blog or like myFacebook page which I keep up to date with new posts as they are written. I also have a closed Facebook group for sharing days out and holiday ideas and tips. You can find me on Twitter @KidsOnTour.