Trauma just isn’t an event that happens to you. The mental images, emotions, flashbacks, sounds, tastes, feeling, and other senses stay with you. Asking to retell your story makes you relive the trauma as if it is happening at that very moment.

A lot of months ago, I was approached by Liz Tung from NPR to ask about my ABA experience. She approached Emma Dalmayne and another autistic who had ABA much worse than I did.

The Interview

We went into details I had never told before. Sure I wrote a blog about it but did not go into very small details. I knew this would be hard so I scheduled this interview on a day when I had nothing going on so I could properly recover.

On top of this hour-long interview, I was asked to voice record myself with my phone and send it to the reporter when she was already recording me via Zoom. I was in ABA for ADHD. It was suggested by the child psychologist that evaluated and diagnosed me. I wasn’t diagnosed with autism until I was 32.

I had to lock my children and partner out of my room. I did not want what I had gone through to be in their heads. This was my way of protecting my family.

Publishing the Article

The article was supposed to post on July 22, 2022. It was my mother-in-law’s birthday so I said that the day would be special. I thought the article would expose ABA for the evil that it is.

July 22 came and went. There was no communication. She said she was sick and then it got delayed. Of course, we were all understanding of that.

After a while, they stopped communicating with me. One of the last emails I had gotten from the reporter said that not everyone was in the article. In the back of my mind, I had a feeling it was me. `

Emma had been keeping me updated because Liz Tung had stopped communicating with me. Emma is one of my best friends and always kept me in the loop. She told me that it was due to publish on October 7. Which it did.

The Report Was Not What We Expected

The three of us thought this would be an expose of what ABA was like. We were very wrong. It was not a written article, it was in podcast format. It was not easy to get it to play. It would not play in the browser, we had to get it to play in an app.

I listened to it while I was working. That’s when I normally listen to podcasts. It started out as an advertisement on how wonderful ABA is. I started to feel so sick, I could not even eat my lunch.

I started to freak out that they made me relive my trauma for no reason. I kept on listening because I had to know how they did this. The person who narrated it had horrible language “person with autism.”

They started by interviewing Alison Singer of NCSA. They kept on saying how ABA got her daughter to speak, use the toilet, etc. She did not talk about how this affected her daughter mentally.

After that, they interviewed a friend by the name of Brian. They spent a lot of time talking to him about what his ABA experience was, how it affects him now, and other details. Brian did an amazing job.

After they were done with Brian, they talked to Emma about what ABA is and how it is different than conventional parenting. Emma did an amazing job too.

Liz Tung then talked about reinforcers. They used M and Ms as an example. That was my reinforcer and I could not look at them for YEARS.

After that, they had “experts” on autism defend ABA. There must have been 4 or 5 experts delegitimizing autistics experience in ABA.

That’s how it ended. They gave more airtime to people who were pro-ABA. It was 45 minutes of this. I felt sick to my stomach. I was fighting off several meltdowns. I was mad that this came out the day before my son’s bar mitzvah.

I felt violated, and stripped of my autonomy. I felt like I was the scared little kid again being exploited.

Confronting The Reporter

After I was able to gather my words, I emailed Liz Tung and told her how I felt violated and that I had to relive the trauma for no reason. If she gave me some warning, I could have prepared myself for this podcast. I did not even get that. I understand that they cannot use everything.

This is the email she sent back to me. She completely gaslit me.

Hi Aviva
Apologies for not letting you know ahead of time
that the story was coming out – we usually send
stories to people on the day-of, but I hadn’t realized
how important it would be for you to know ahead of
time given the trauma you experienced.
I’m also truly sorry to hear that this whole process
retraumatized you – if I had known that was a
possibility, I certainly would have communicated
better or talked more deeply with you about
whether or not this was something you wanted to
do. I feel awful that you feel violated… But thank
you for letting me know – I haven’t done a lot of
reporting on trauma, so this is something I’ll
definitely keep in mind for the future.
Finally, I hope you don’t feel like the interview was
a waste of time – I know it wasn’t for me. I learned
a lot from our conversation. including how deeply
ABA can hurt and traumatize kids. Unfortunately, I
don’t get the final say over my stories. I would’ve
loved to have kept your voice in it, but A LOT was
cut for time, with edits continuing until the last
minute.
Anyway, thank you for being brave enough and
generous enough to share your story and time with
me. I’m very aware that not all of the work self
advocates like you do is visible – but it all makes a
difference, and it all matters.
Liz

How to Interview Survivors of Trauma

There is a way to interview survivors of trauma. Interviewing a trauma survivor can make the person relive the trauma if you are not careful. Sometimes there is no getting around it but using these methods, the impact will not be as severe.

Treat people with respect and gratitude

As yourself how you would want to be treated if you were in opposite positions? Treat your interviewee that way. This includes respecting someone’s decision not to talk to you. You should always thank them. This also means not publishing or broadcasting a story when it goes against their wishes.

Be a Human and Express Empathy

“It’s OK to say to someone ‘I’m sorry you’re going through this. Show people you care,” a victim of trauma had stated. The approach should be trauma-informed. It means learning as much as possible about trauma before the interview. When you are actively in the field, be compassionate and sensitive.

Respect Boundaries and Give the Subject Their Agency

Take cues from your source about the direction of the conversation and treat them with kindness. Give subjects the opportunity not to proceed if questions are too difficult. Let them have someone they trust to be with them for moral support. If they stop the interview, respect that decision.

If possible, get to know the person before interviewing them about the traumatic event they’ve experienced

Spend time with the subject and listen to them as a person. It gives. a better sense of their experience and how they live their lives. This shows them that this is not a transaction but that you actually care.

Don’t start an interview by asking about the traumatic event

The totality of a person’s life isn’t the worst thing that has happened to them. Ask them about moot or mundane things. The conversation will normally steer itself to the subject you were there to speak about. If it is led by a person who has suffered trauma, it will be a better experience for them.

Take care of yourself

Journalists, bloggers, podcasters, etc who have to bear witness to the suffering of others often are traumatized themselves. Reach out to your support system of friends, family, and others. Seek mental health services if necessary.

Sources:

The Battle Over Autism Therapy ABA

Interviewing people who have experienced trauma