I met Carol Greenburg last summer at the BlogHer conference in New York. Her confidence, humor, and commentary made her instantly appealing, but her kindness, fierce intelligence, and advocacy skills make knowing her both a luxury and a necessity. She is the executive director of Brooklyn Special Needs Consulting, and serves as the East Coast Regional Director of the Autism Women’s Network. She joined the Thinking Person’s Guide to Autism’s editorial board in January, where she adds her depth of knowledge as an advocate, parent of a special needs child, and an adult on the spectrum. ~Jennifer
I’ve joked with you before that you really “have it all.” You’re an adult with Asperger’s syndrome, the mother of an autistic child, and an advocate in the autism community. Do you have trouble switching hats? Do you compartmentalize?
I try to compartmentalize. I think that’s the only way to really do it. It can be really hard because sometimes I feel like I over-identify with my son, and his experience is very different from mine. He’s language delayed, and I’m not. That makes a world of difference, and honoring that difference and frankly how much more difficult his life is day-to-day because he’s more obviously autistic, and I “can pass,” while still saying I have a sense of what he’s going through. That’s a difficult balance.
Which role challenges you the most?
Advocacy is kind of a breeze; it comes naturally to me. Being autistic, I don’t have any other frame of reference, though I do have a sense that it must be nice not to have to deal with some of the things I deal with every day. But then again, I have access to a lot that non-autistic people don’t, so that sort of balances out.
I think being a parent is hardest, just because being a parent is harder than anything else in the world.
Is it harder to advocate for your son?
I have to keep a cool head; go to the IEP meeting and listen to what they have to offer and not talk too much. That’s hard for me under any circumstance, but it’s particularly hard when it’s my son. And it’s interesting when they don’t know I’m an advocate. It’s not going to last forever, but some places still haven’t figured it out after all this time. When they did at one agency, after they looked me up on the web to find a phone number, all of a sudden it was more like, “What can we do for you?”
How did you move into advocacy work? Was it a crisis? A calling?
It started in crisis. About a week after her son was diagnosed with “somewhere on the spectrum,” one of my best friends was diagnosed with an aggressive form of breast cancer. She called me up, and she said, “I can’t do both.” So I said, “Okay. You fight cancer, and I’ll fight for his schooling.” And that’s the day I started.
When I became an advocate, when I decided to turn pro, it was because my husband and that child’s father talked me into it. I was able to get that child some services that other people didn’t seem to be able to get for him.
Is that because you’re scary? Or talented? Is it that you use the right language?
It’s mostly because I’m scary. No, I really studied a lot about diplomacy and conflict resolution when I worked on my masters degree. I also come from a long line of women who complained about customer service. My husband reminded me that I was born for this job. It really is customer service.
The child I was advocating for was not getting transportation. No bus. My friend was going to MRIs and chemo and had no regular access to a car anyway, and her kid was not being picked up by the bus. So I had arranged for a car pool, and one day the other person in the carpool just couldn’t do it anymore, and my friend had an emergency scan, so I took my son and went to the other school, and there I was standing in the yard, holding the hands of two little autistic boys talking to the Assistant Principal who had been promising the parents transportation for so long. He was trying to bond with me. “Oh, isn’t it horrible we can’t get transportation for this family?” As if I would sympathize with him because he had made a few phone calls. So I said, “Yes, it really is awful that you can’t get transportation, and I’ll tell you why. You are in violation of federal and state law every time you fail to provide this child access to this school. You are denying him free and appropriate public education. And someone is going to need to answer to that, and that’s not going to be the district, I think it’s going to be you. So yes, it really is a shame that you don’t have any power to do something about this.” And I said it very loudly, and in front of his entire staff. I left with the two boys, and I thought I’d really stepped over the line. Then I got a call from the dad “We’re getting a bus tomorrow on the condition that we never send you back to that school again. I don’t know what you said, but it worked.” So we laughed and laughed, and he was saying that I really ought to turn professional, and my husband was saying why are you laughing? So I started applying for Wrights law courses to learn, but a lot of it does come naturally to me because I have a way of threatening people without sounding threatening.
What’s that one piece of advice you give to parents who have a child in the school system?
I think that the relationship with the district and the school is every bit as important as getting the services, because you are going to need to go back to those people the next year. That’s why you have to be able to take a strong stance for your child without coming off as a crazy person. You have to find common ground.
And sometimes those teachers are just as frustrated; in fact it is not the teacher’s role to be the advocate. Teachers who advocate for their individual students often get fired. It’s the role of the teacher and the district to be the resource for good information, who to go to, and then it’s the parent who is the advocate with the back-up of those organizations.
The teachers, the principals, they are in a terrible bind, the federal government says “You have this mandate but we don’t owe you any money to do it. So good luck.” And they constantly have to make an impossible choice; they have to ration. The parent who advocates get services for their kid and the ones who don’t know their rights, they don’t get those resources.
So what is that one piece of advice?
“Think about your rights but talk about your responsibility”
So if you walk in and you say, “I know my rights, and his needs dictate that he gets speech 3x a week, and need dictates everything, so you have to give it to him.” You’re not going to get as far as the parent who says, “We’ve been told by an independent authority that he needs speech 3x a week, and we understand that the school has been offering 2x a week. How do we work together, to partner, so that he gets his needs met?”
If you’re bringing up the law in an IEP meeting you are probably going off course. Remind them of their responsibility, but phrase it in terms of your responsibility, “I am responsible for my kid turning out to be an educated person. Help me fulfill my obligations by helping me with resources.” Rather than “You better do this.”
You spoke about parents who know their rights, and I realize I have guilt because I know how privileged I am, and I have an expectation to speak with someone who can make decisions, and there are only so many resources…
The language gap aside, in many countries one does not ask the authorities for anything, and there are a lot of people who are coming from cultures where they wouldn’t dream of asking. There are an enormous number of reasons why someone might hesitate to ask for services. Also, quite often it is women asking, and women have more trouble asking. Men have less trouble asking for what they want, which is just cultural conditioning.
I get calls about these awful cases asking for help, but there are resources for free advocacy. So I have to tell them up front, that my organization is for profit, it is my living, so if you can pay me, hire me, and if you can’t, here’s a list of organizations who do it for free. Private is going to get further, but there are places that will help for free. It is my policy that no one walks away without a phone number or an address or something. And I try to give them some tips on how to get that advocacy.
But if I lived in that place of guilt I would not be able to get anything done for anybody. And one thing we’re doing, as parent-advocates or professional advocates, we’re setting precedent which lays groundwork for other children.
You are successful, accomplished, and employed, but there are many adults with autism who are struggling, what support systems are missing?
Having lost most of the jobs I ever held, because I was one of those unemployable, very highly-educated and perfectly capable autistic adults for most of my life, I have found that working free lance was the only way to go. And you will find a lot of autistic entrepreneurs for this reason.
When autistic people have control over their environment, when they are physically, emotionally and socially in control, they can be more successful. You’ve got to have the chutzpa to say, “Here’s what I need in order to succeed.” And that chutzpa is something that can be very hard to get. Self-advocacy is the single-most important skill any parent can teach any child; being able to stand up for yourself and say here’s what I need without insulting other people. And for autistics, acknowledging to yourself that there’s nothing wrong with you because you can’t use your abilities in the way that other people do. I will never be able to hold a “regular” 9-5 job and really succeed in a big corporate environment. Once I let go of the notion of a regular job, that really freed me up a lot. And freelance in this economy, that’s not such a horrible thing.
Of course then you have to figure out health care.
Well, there’s another area of advocacy that needs more people. Hey, there’s a good place for autistic people to look for work.
One of the things we’ve talked about at TPGA is that information about the transition from autistic child to young adult is missing. Do you think job skills training or life skills training would have helped you?
If I had some of the skills most people have by the time they finish high school, I might have been able to survive in an office environment. But what I found most difficult was not being able to participate in office politics. I have a real disability. If you are really bad at subtle facial expressions, or if people are saying one thing and meaning the opposite I can’t tell, and if I can’t do office politics I can’t be in an office.
Social skills are really very important. All of those little skills that make people say, “She’s such a nice person, ” or, “She’s great to hang out with,” those are often more important that job skills per se.
Talk to me about humor. You said once that you don’t expect to get every joke, and you really don’t want to have them all explained to you. I love your humor, it seems to be dark like mine.
I do have a very dark sense of humor. I have a very good sense of humor, but what I think happens, and I think this happens with a lot of autistic adults, if there is any disequilibrium, it puts us at a different level of functionality. Disequilibrium, even for a few seconds, and my ability to joke around and understand sarcasm, for example, is gone. I become tone deaf to it when I am in a particularly autistic state, and I really don’t know if people mean things literally. And that can happen at any time, if an alarm goes off, or a light is too bright. One of the hard things about being autistic is that you never know when you are going to be more or less autistic. I think that’s hard for all of us with autism. That’s why the notion of functionality is not offensive, it’s meaningless. I’m talking to you now and making some sort of sense, but if something happened, and the light bulb blew out, I might lose language completely. You never know when it’s going to happen. You never know when you are going to find yourself standing in the middle of the street not knowing how to dodge the cars, or where you are in relation to them. You never know.
Does that make you scared? Or panicky?
I haven’t met many autistic people who don’t suffer from significant anxiety and depression. So yes, I’ve always had anxiety problems. What I hadn’t realized was that I thought I was having anxiety attacks, but I was really having autistic meltdowns. I only came to this conclusion after reading a book by Deborah Lipsky (and Will Richards), “Managing Meltdowns.” She’s an autistic adult with a MA in Education. She’s a very highly-educated, articulate woman who found herself wading in a river and almost drowning because she became dysregulated. She became agoraphobic, it was really hard, but once she understood these episodes as meltdowns; they became much more manageable.
So if you put it in terms of dysregulation and encapsulate it into periods of time, you don’t think you’re like that all the time which could make someone feel so out of control and depressed.
Most autistic adults do feel depressed because they feel out of control–because they don’t know when it’s coming.
So maybe a little like epilepsy? So do you know afterwords that you are in control again?
Yes. I’ve always had an interest in epilepsy because of that sort of connection. Science is starting to draw a lot of connections between autism and seizures. Also that autism, in and of itself may have a seizure disorder component. Now that I know that it’s an autistic meltdown, I’ve learned the signs; I can see it coming on. Part of it may be because I’m the parent of an autistic child so I can see it coming on with my son and I can translate that. I can see I am entering a very autistic mindset because I’m obsessing over one thing, or there’s more rigidity, or there’s fear that is not in proportion to the cause of the fear. So then I think to myself it’s time to find a safe place or go have some tea. I will always have meltdowns. It’s a question of how I deal with them.
And how you take care of yourself, and how you seek accommodation?
I feel like the more often I have to encounter the need for accommodation the more empowered I am. Recently I traveled on a plane, and while the TSA is much more sensitive to these issues, I get stopped more often because my face has lower affect. (That is what profiling is supposed to be about by the way. That’s appropriate. You should profile on the basis of behavior not race- I probably do look different.) I was thinking, I can pass as neuro-typical. I can make it through an airport security line, but that would be really stressful for me. So I thought, why don’t I try not to pass? Why don’t I call them and say I’m autistic, and I will probably be okay, but can you do this or do that. It was really hard for me to do because it meant outing myself, making myself vulnerable, but ultimately it made me feel very empowered because I was able to ask for what I needed. No one made fun of me. No one told me I didn’t need it.
And you were in control of “outing yourself.”
Yes. There is a big difference between a secret and something that is kept private. I used to have to hide my difficulties. I no longer have to hide them. So for the first time in my life I played the “autism card” on a plane, and said I needed to pre-board, I have a disability. And the only thing they asked me was, “Do you require a wheelchair?” which is perfectly reasonable. They didn’t question me. No one said “No you don’t.” I preloaded and it was so much easier. I take forever to get myself organized, so I know what I have within reach. Previously, I was always getting in people’s way, and my proprioceptive awareness is so poor that I never know when I’m in someone’s way. Then they get annoyed with me, and I always get yelled at. So this time, I took it upon myself to ask for help. I have the right not to get yelled at, and if this is what it takes, it’s what I’m going to do. I also decided I was a hypocrite if I didn’t do it. If I’m going to be @AspieAdvocate, and preach self-advocacy, I have to walk the walk.
And you didn’t use all of that emotional energy to deal with just getting on the plane.
Right! I sat next to two young children. Now, I would like to think I would have been gracious otherwise, but I know it was a lot easier for me to be understanding of them and their needs because someone had understood my needs.
So this touches on real autism awareness. Real autism awareness is that, this really is invisible, but you really can listen to people and they can tell you, and you really can accommodate. It doesn’t take that damn much.
I’m proud of you for asking for that accommodation. There is no shame in having autism, but I’m guessing that admitting you weren’t good at something, that didn’t sit well with you.
It’s a huge thing for me. Not that I’m not all out there about being autistic, but having to admit that I’m not so good at this…
It made me feel vulnerable, but tough on me. Life’s not fair. And it’s the only way my son is going to get through life, and if I am going to raise him properly, I will need to model that.