Paul Ganucheau Interview

In this episode, we talk to Paul Ganucheau, Board Member with the Autism Society of Acadiana.

As the first board member on the spectrum, Paul discusses peer support groups, how to be a better advocate/self-advocate, and partnerships with with other grassroots advocacy groups such Families Helping Families of Acadiana & LACan.

Transcript

Mary Baudoin (00:00):

Thank you for joining us for this episode of This Ability Podcast. I'm your host, Mary Baudoin, and joining us today is Paul Ganucheau. You show a board member with the Autism Society of Acadiana. Welcome to the show, Paul.

Paul Ganucheau (00:12):

Thank you for having me, Mary.

Mary Baudoin (00:13):

Tell us a little bit about yourself.

Paul Ganucheau (00:15):

I'm the first board member of the Autism Society of Acadiana has had that was officially diagnosed on the autism spectrum. I was diagnosed as an adult, and I am still a board member now on the advisory panel after terming out as an executive board member. I'm a career volunteer and self-advocate.

Mary Baudoin (00:32):

I'm glad that you're here today to talk to us a little bit about something that's close to home to you. So, Paul, tell me a little bit more about your diagnosis.

Paul Ganucheau (00:40):

I was 25 and medically discharged from the United States Marine Corps Reserve for back and knee injuries and a few psychological issues. I was seeing a neuropsychiatrist on staff for depression and anxiety following that discharge. My wife, whom I was dating at the time, said, "I love you, but something's off, and I want to find out what." So that neuropsychiatrist asked me a bunch of questions, asked her a bunch of questions, and we tried to get my family in to ask them a bunch of questions, and they ruled out all but high-functioning autism. They wanted to call it Asperger's, but the DSM changed, and they had to just lump it in the spectrum.

Mary Baudoin (01:14):

How did that affect you? Did you think this is going to change my life?

Paul Ganucheau (01:19):

It was a lot of back and forth.

Mary Baudoin (01:20):

Yeah.

Paul Ganucheau (01:20):

There was a, "What was me? Why is this happening?" And then there was a, "Okay, this explains a lot." And that moved into, "All right, there's got to be other people out there like me, and what can I do about it?"

Mary Baudoin (01:32):

Did you turn to the internet to try to find some good resources?

Paul Ganucheau (01:36):

A little bit. One of the things I did first before I found out about the Autism Society was I was looking for a support group for adults. The closest thing I could find at that time was NAMI, the National Alliance on Mental Illness, and before we get a little further into that, I know autism is not an illness, but they do recognize it, and I was able to sit into some group therapy sessions talking to other people who were living their best life with bipolarism, severe depression, or schizophrenia who were examples of, "Okay, if they can do this, I can do this."

Mary Baudoin (02:09):

What other organizations, places, or people have been a resource for you?

Paul Ganucheau (02:15):

After that, someone at NAMI directed me to the Autism Society of Acadiana, and I became a board member there. I found out about their peer support group in Lafayette, and then from there, after I moved from Lafayette to Eunice, I started my own peer support group in memorandum of one of our members in the Lafayette group who's no longer with us. But other than that, People First of Louisiana has also been very instrumental in allowing us to get our voice out there about issues, as well as families helping families of Acadiana.

Mary Baudoin (02:45):

One of the things I find that is a great resource is support groups. When my daughter was diagnosed, of course, you can find things on the internet, but really what helped me was finding other moms to talk to, even though my daughter, she has a rare condition called lissencephaly, which means smooth brain. So her brain is not fully developed, but the brain stem itself is, and so it is a rare neurological condition. However, there are certain traits that she has that other people with special needs can relate to. She needed a feeding tube. She has epilepsy, and by talking to other people, I was able to really get some helpful information, especially when she was first diagnosed and getting a feeding tube.

(03:28):

That was a fear of mine. I'm like, "Oh my gosh, she can't eat by mouth." Just as a mom, as a parent, you're concerned, and then you start to realize it's okay that there's these people that you don't even know. Complete strangers help to comfort you. When there's something that you just don't know much about, and as the time goes on, then I find myself comforting other people that are new to that condition. Do you find that to be the case with you?

Paul Ganucheau (03:54):

A little bit. There's some turn around. A lot of times, we have in our peer support groups, people who are currently seeking diagnosis themselves, who are adults that are undiagnosed and right now because it was a fluke for me with the VA system, but a lot of times I'm having to tell them, "Call up LSU or call up Tulane and get on the waiting list."

Mary Baudoin (04:12):

So tell us a little bit more about the peer groups here in Acadiana.

Paul Ganucheau (04:16):

There's a Lafayette support group on the Lafayette Asperger's support group for individuals on the spectrum, teens and adults. They meet periodically between different restaurants in the area and the Lafayette library. And then there is my group, we named after one of our members, Mark Anthony Trahan. We call it MAT, or Managing Asperger's Together, and we meet at the LSUE Arnold LeDoux Library in Eunice or some of the restaurants in the Eunice area. I don't want to overshadow the parent support groups, either.

Mary Baudoin (04:42):

Yes.

Paul Ganucheau (04:42):

There are parent support groups, like you had mentioned earlier. There's one for the moms and one for the dads too.

Mary Baudoin (04:47):

From the Autism Society, and I believe I've seen those postings on Facebook, if I'm not mistaken. So it would be a good idea for our listeners to follow them on Facebook. Even for those that are living out of state, there's a possibility they might do it via Zoom. I know that for the Dreams Foundation, we did a lot of meetings during COVID. We did it via Zoom because during that time we're all stressed out. Coping with COVID, plus other things, life in general, can be stressful, so having a support group there, whether it's virtual or in person, is a great thing. Tell us about the support group for dads. Are there many guys that participate in that?

Paul Ganucheau (05:24):

There are several.

Mary Baudoin (05:25):

Okay.

Paul Ganucheau (05:25):

Some from the board that try to just do their own thing. It could be the group for the moms, and there needed to be something for the dads. I know they meet in Lafayette, as far as I know. Again, you could find out more information on Facebook on their page. It's not just the support groups that the Autism Society helps connect people with. A lot of times, they will try to do their best to live by their mission statement, and that's to better the lives of all persons affected by autism. Whether it's the peers or the parents, they've created activities throughout the year, like annual Christmas parties, the Walk that's recently been replaced with the annual Bowling for Autism, and since I came on the board, I've tried to pressure them to make activities for the adults on the spectrum, not just the parents and not just the kids, but the adults that the kids are going to turn into. So what we did was partner with the Lafayette Economic Development Association and tack on to their Diversity Job Fair every year at the Heymann Center.

Mary Baudoin (06:16):

It's nice to have the supports that it's not just focused on the pediatric diagnosis. It's for adults as well. We all need some support on some level, and I find that some people are very introverted about topics like this, and it can be helpful, though, to reach out. Even attending the support groups, it might be 30 people, but you're going to sit next to someone, and even if you just connect with that one person, it's a huge benefit.

Paul Ganucheau (06:39):

Right. I think the parent support groups have a greater turnout than the peer support group have. Some of it's also trying to find activities they can all agree on doing together. First, I was kind of gung-ho, wanting to give little classes on financial stability or how to build a resume, and it was trying to keep them engaged or excited about wanting to come, and after a while, it was kind of beating a dead horse, talking about self-sufficiency, but we kind of just bounced back and forth between restaurant meetings, casual group discussions, and game nights, and I tried to fit in some advocacy in between.

Mary Baudoin (07:10):

Are there any bills, any legislation right now that we need to keep our eyes on?

Paul Ganucheau (07:14):

Being in the Autism Society, we cannot take a particular stance on a candidate or political party, but when there are issues that, advocacy-wise, affect us, we can try to get the word out there to influence and change. In the past, there was issues with trying to get security cameras in SPED classrooms because there were repeated incidents of students being abused in our schools, and we kind of joined forces with families, helping families to get the word out there and tell the parents, "Okay, they're having a bill that they're hearing on about these cameras and classrooms. If you care about your kids, you might want to look into it." Something similar is going on right now with the current State Constitutional Convention. Now, people are saying it's a little long, it's very long-winded, and it takes a while to get through. Some other states have shorter constitutions, and be that as it may, we're unsure as to what they're changing, what they're omitting, and how that might affect, for better or for worse, healthcare, education, and housing for differently abled populations.

Mary Baudoin (08:13):

So it would probably be a good idea for those of us hearing this news to get in touch with our state representatives and senators and find out some more information and because what they're there for. They're elected officials, and we voted them in, so we should be able to contact them easily to get that information, and then they could provide that to us so we could decide how to ask them to support it or not, depending on what the legislation is.

Paul Ganucheau (08:39):

Another issue coming up right now, it's been ongoing since early this year, the Special Education Advisory Panel with the State Department of Education.

Mary Baudoin (08:48):

Okay, tell us a little bit more about that.

Paul Ganucheau (08:50):

They're an advisory panel in name consisting of retired professionals, parents, and self-advocates.

Mary Baudoin (08:57):

Okay.

Paul Ganucheau (08:57):

That's to provide just a little bit of extra eyes and ears in the Department of Education saying, "Hey, maybe you shouldn't be doing that." Or, "If I were you, I'd probably be doing this that way. Try to make the education system do more of what we're hoping it should be doing and try to fit within that No Child Left Behind Mentality more and more." They were dismissed early this year via email, and they have yet to reconvene or create a new seep after a lot of people applied for the vacancies.

Mary Baudoin (09:29):

Was it because were they bringing up topics that were controversial?

Paul Ganucheau (09:32):

I don't know. All I know is that they were basically told that they were going a different direction, and be that as it may, there's still a void that needs to be filled in terms of accountability for, basically, persons that are responsible for shaping and molding your child and their future, whether or not they will be able to obtain and live the quality of life that they want or you would want for them.

Mary Baudoin (09:56):

You mentioned a little bit earlier about partnership with Families Helping Families, and that's a huge one because they have their own advocacy team and they do a wonderful job of promoting that.

Paul Ganucheau (10:07):

Autism Society on its own is a family. It's a big family of parents and individuals whom are diagnosed themselves, but even on the broader spectrum of things in terms of advocacy, it's a big family between us and Families Helping Families, all the other organizations in the area that we team up with.

Mary Baudoin (10:24):

Tell me about the Autism Society itself. How many employees are there, and what do they do? How big is it?

Paul Ganucheau (10:30):

There's a handful in the office that are usually available Mondays, Wednesdays, and Fridays to ask general questions, refer people to healthcare providers in the area, or help them try to seek diagnosis. Other than that, it's mostly board members who just volunteer out of their time to help keep things on top and plan future events. Whether it's our summer cooking classes or water safety survival classes for the little ones, or if it's the mom's appreciation night, we try to do a little bit of everything, everybody in it.

Mary Baudoin (11:01):

That's great.

Paul Ganucheau (11:03):

It's hard to please everybody, but we do our best.

Mary Baudoin (11:04):

So if someone's listening and they live here in Louisiana, how can they get involved with Autism Society?

Paul Ganucheau (11:10):

Come to one of our events. Like I said, check out the Facebook, check out what the next nearest event is, and if you see one of us wearing a gray polo shirt with an Autism Society Acadiana logo, ask us about it.

Mary Baudoin (11:23):

Speaking of the logo, I think you were mentioning to me before we started to record this episode that the logo has changed recently. So tell me a little bit more about how that came about.

Paul Ganucheau (11:34):

A long time ago, we were given a symbol without our consent. We had this puzzle piece put on us, and that was to describe us as being puzzling, as pieces of a puzzle that needed to be solved. Over the years, as a lot of us became more self-aware, we started to not really appreciate that symbol. It started to develop a passive-aggressive, passively ableist connotation with us, and we did not like that. The Autism Society, on the national level, they heard that. In trying to be instrumental in elevating our voices, not only by trying to have more of us representing ourselves on that board, they also decided, "Okay, we're going to retire that and we're going to create a new logo. What we want is we want input from the autistic community in helping us create that new logo." That's what they did. They asked us for input. I couldn't have been happier because there are still other well-meaning persons and organizations that are still hanging on to that puzzle piece.

Mary Baudoin (12:26):

I'm looking at your website now, which, by the way, for those of you listening and would like to check it out, it is acadianaautism.org. That's acadianaautism.org because they are a non-profit organization. If you look at the website, you'll see the logo at the top. So tell me a little bit about the symbols that are on the logo. What do they represent?

Paul Ganucheau (12:50):

Interwoven strands representing different people across the spectrum and coming together to help each other.

Mary Baudoin (12:56):

I love the colors, and I love the fluidity of it. I think it's eye-catching as well.

Paul Ganucheau (13:01):

Other thing too is we're not depending on that blue. One thing they have done in the past is stressing that blue, not just the puzzle piece but the color blue. That goes back to it being mislabeled as a boy's disease. That was because a lot of the diagnosing criteria was more geared towards diagnosing it in males than females, when actually, I would argue, equally prevalent in males than females.

Mary Baudoin (13:23):

Right.

Paul Ganucheau (13:23):

Females typically are capable of, quote, unquote, "masking better" and dealing with these social situations a lot easier than the boys do. So it's harder to get a diagnosis.

Mary Baudoin (13:34):

I think you bring up a good point because I think my parents' generation, grandparents' generation, there were people who had developmental disabilities. They just were not diagnosed.

Paul Ganucheau (13:44):

Yes.

Mary Baudoin (13:45):

So it does seem to people say, "It seems like there's more autistic people out there." Not necessarily. They're just, "Now we can recognize some of the signs and we can actually diagnose someone." Just like many different mental illnesses, we're able to diagnose and pinpoint instead of just not being able to have a specialist really focus on it. Now the medical society is really owned in on autism and then the different aspects of it, like Asperger's.

Paul Ganucheau (14:12):

Even the younger generations right now, unfortunately, a lot of us didn't have the benefit of that early intervention growing up, but a lot of the younger generations. A lot of the parents are voicing through the Autism Society, through Families Helping Families. They are getting proactive in schools and saying, "Okay, what you're thinking is a behavioral problem is actually, it's their autism. It's affecting their ability to adapt, to change, or cope with the stressful situation in the school setting."

Mary Baudoin (14:38):

One thing I want to commend you guys on is the website. It is very nice, very easy to navigate, and I do see there's a Volunteer Opportunities tab. So if any of you listening are interested in volunteering with Autism Society, you can look at their website for more information. Again, that's acadianaautism.org. So, in looking at the website, I see you guys have a lending library. Tell us more about what that is.

Paul Ganucheau (15:03):

It's different books and there are some audiobooks in there too about autism for younger people, teenagers, and adults to try to gain some introspection and some insight into what autism is and how to live with it. Some books are written by parents and professionals, and some are even written by persons on the spectrum. It's free for anyone who's a member of the Autism Society to go to and borrow a book. In fact, we're currently working on trying to update the checkout system right now.

Mary Baudoin (15:31):

I wasn't aware of how big the Autism Society is here in Louisiana. It looks like there's one in Greater Baton Rouge, Southwest Louisiana, and in Greater New Orleans. I see. I subscribe to it. I get it. The newsletter that comes out, like once a month via email, it is chock-full of information. So I would highly recommend anyone, whether you live in Louisiana or not. It's got some good information about autism, so be sure to subscribe to that.

Paul Ganucheau (15:58):

Even if we don't have activities, that many of them cater to what your fancy might be. We also have connections with all kinds of organizations in the area. One case, in particular, I know you work with Dreams. I met some contacts through Dreams. I forget how. I want to say it was in planning the Diversity Job Fair that connected me with a gym called Train Unique.

Mary Baudoin (16:17):

Yes.

Paul Ganucheau (16:17):

In fact, one of their coaches is on our board, and through them, I was able to participate in the Special Olympics Powerlifting program.

Mary Baudoin (16:25):

A lot of the nonprofits here interweave with each other because they're all resourceful, and we can share those resources. It's good to share information, and it helps the parents because my daughter doesn't really fall into a specific diagnosis other than lissencephaly. She's not autistic, but she is special needs, and she is more on a profound level. So she could attend certain events or fall into something that might be sponsored by the Down Syndrome Association because it's geared towards sensory events like that, are great. So I'm always keeping my eye out for those, and she can attend it because it's geared towards people that are like her.

Paul Ganucheau (17:05):

It goes back to the old adage, sharing is caring.

Mary Baudoin (17:07):

So we've got a few minutes left, Paul. Is there anything that you would like to cover that we have not discussed?

Paul Ganucheau (17:12):

Just advocacy and self-advocacy. There is a difference I find between being an advocate, being a parent, or a teacher and being a self-advocate. Somebody who's on the spectrum, trying to bring up an issue.

Mary Baudoin (17:23):

So tell me how, if someone is listening to you and they're like, "Okay, I have been diagnosed. How can I advocate for myself?" What exactly is self-advocacy?

Paul Ganucheau (17:32):

That's participating in organizations like the Autism Society for Equal Representation. Since I have gotten on the board, they have gotten two more individuals on the spectrum. Actually, I've termed out, but they promoted me to being an executive board member. Now I'm back to the advisory panel. I'm in it for the long haul for the better, and there's a difference I want to say between speaking for us and then speaking with and alongside us. What the Autism Society has done over the years is they've been instrumental in speaking with us and alongside us and helping elevate our voice, not just the parents, not just the professionals and the teachers who are participating, but also us ourselves. They are doing their best to promote their image as people who do care and want to see the best for us.

Mary Baudoin (18:17):

You summed it up great.

Paul Ganucheau (18:18):

A couple of things that they can do, in addition to volunteering at events, also just staying on top of those key issues in the state. Like we were talking about at Constitutional Convention, talking to your state senators and representatives and just making your voice heard. That's a way to advocate for yourself. Another thing is trying to help other people who are seeking that diagnosis, who are trying to get that diagnosis, whether it's finding a care provider who will help them or helping encourage them to get to LSU or Tulane.

Mary Baudoin (18:49):

All right, thank you so much for being here. We really appreciate it. Thank you, everyone, for listening to this episode of This Ability Podcast. If you're enjoying listening to our podcast, be sure to like our page on Facebook at This Ability Podcast or subscribe to our YouTube channel. So thank you, everyone, for listening, and we'll see you next time.