What happened to Carly Fleischmann? : an exclusive interview with her father

At the age of two, Carly Fleischmann was diagnosed with severe autism and an oral motor condition that prevented her from speaking. Doctors predicted that she would never intellectually develop beyond the abilities of a small child. Although she made some progress after years of intensive behavioural and communication therapy, Carly remained largely unreachable. Then, she had a breakthrough. At age eleven, Carly was allowed on the computer, where she typed out:

HELP HELP

The astonishing story has since been turned into a book by her father Arthur called Carly’s Voice, which gives the reader a first-hand opportunity to learn about autism from a girl living with it.

In February of 2014 she went to Vienna as part of a school project and then everything went quiet and nothing was heard until December 4, 2014 when a post appeared on Facebook. Carly had been given electroconvulsive therapy (ECT) after which she had a loss of language skills.

Since December, the autism community as a whole  has been concerned about non-verbal autism advocate Carly Fleischmann. The twenty year old seemed to become silent, her writing and communication stopped for a while, sparking a rumour mill of concerns, and some unfounded misguided rumours in some pockets of the community. Autism Daily Newscast reported Shan Ellis decided to take a leaf out of Carly’s own book, and go “straight to the horse’s mouth“.

In an exclusive interview, we talked directly to Carly’s father, Arthur Feischmann,  who in a candid interview from his office in Toronto, wanted to set the record straight and alleviate the concerns of her active followers online.

Would you tell us why you haven’t spoken publicly before now?

In general we do not comment about Carly, or her condition. She twenty years old, and has a mind of her own, capable of making decisions with guidance from us. I have tried to clear up some obvious misconceptions which were floating around on some online forums and Facebook previously as Carly absolutely hates presumptions.

People who live with her condition have very little control over their lives normally. Carly’s writing is the only thing she has any control over, and we have raised her to give her space as well as the structure that she needs to think independently.

Can you tell us what happened to Carly?

Click to continue here….

Get Your Subscription In Your Preferred Format

                

During the tail end of last year (2013) Carly was having a few really bad problems with her OCD. She has struggled with her OCD to an extreme level for a long time, but last year she was very bad, bad enough to keep her off class and it was bugging her. She herself researched ECT treatment (electro-convulsive treatment) as a treatment to lessen the symptoms of OCD. She wrote that she couldn’t wait to try it as her OCD was taking over and she didn’t feel able to continue as she normally did.We had to accept this as something she wanted and then researched the best specialists and therapists in the Toronto area. She had a few sessions of the treatment and we didn’t see any positive effects, in fact her writing diminished and a few months down the line she’s now saying she’s having trouble understanding us, and any communication, that it is garbled and incoherent.

Thinking back we can’t be sure that this is as a result of the ECT because prior to the treatment she was experiencing standing seizures, so as a family it’s very difficult to determine whether it was the treatment or something Carly was going through prior to trying the therapy. ECT has historically a really bad image, and I would never have put her through it knowing what I know now. And we’ve been reading more about seizure activity especially in autistic girls and women where there is very little to go on. We won’t know if she gets better or what happened conclusively for another year or so, but it’s human nature to try. That’s what we did.

Would you like to say something to Carly’s supporters?

Yes, I would like to say thank you to those who have expressed loving support for Carly.

Anyone who knows Carly will understand that she made her own choice and was capable of doing so. Decisions about Carly’s treatment are made by Carly. It wasn’t a capricious decision taken lightly by us as her parents. We researched the best people in Toronto to take care of her.

Physically Carly is in very good health, but she has been overwhelmed and working hard for the last year or so with school and advocacy, but we really wanted her to live as normal a life as possible. We all have to accept that we have a personal limitation. We have moments with the therapists now where she laughs and jokes with them, proving that the “old Carly” is still in there and fighting.

We are keeping an eye on the so called rumour mill on FB from time to time, but we felt the time was right to come out and give our side of the story.

We would like to thank Mr Fleischmann for making the time to speak to Autism Daily News Cast to set the record straight. We would also collectively like to send our regards to Carly, and hope that she will be well on the road to recovery and back to Carly’s voice very soon.