Episode 7

Tova:            Welcome to Inclusion Revolution here on Eastlink TV.  We’re very pleased you could join us this week, and our guest is Cynthia Carroll from the Autism Centre of Nova Scotia located here in Halifax and one of the things I’m really excited about to have you here Cynthia is because this is an area that has been evolving fast, we hear a lot about Autism, we hear of course more and more youth experience Autism or being identified as living with the spectrum of Autism and I think that it was really timely to get you on here and I know that your centre is doing some incredible work, so first of all, thank you for being here.

Cynthia:  Oh, thank you Tova, it’s a pleasure to be here.

Tova:            So, as you know, Inclusion Revolution is all about supporting persons with all types of disabilities and accessing best practices, the latest information and cutting edge programming, and one of the things that really attracted me to your agency is your forward thinking and the fact that you see your clientele, or people with the Autism spectrum is being capable of having filling and wonderful lives which isn’t exactly what we’ve learnt in the media, of course we never really learn quite what’s going on from the media, and I’m really interested in hearing first and foremost if you can tell me a little bit about your centre and your goals, your overall goals and then we’ll get into some of the specifics if we can.

Cynthia:            Sure

Tova:            Thank you.

Cynthia:            Ah, well, ??? Autism Centre was founded in 2002 and we actually started as an information resource library.  The centre was actually founded by Jack and Joan Craig and they raised a son with Autism in a generation where there were no supports or resources or accessible information about Autism, so the challenges they had 50 years ago, he’s 55 now, was well you know, if your child was different like many other disabilities, you know the option was to maybe institutionalize them or keep them kind of hidden away.  So, as Joan and Jack raised their son, they dreamed of a place where parents could go and find reliable and accurate information on a lot of things you just talked about Tova, you know, what are best practice approach is, what sources are available in your community or community close to you and that’s really what the centre was founded, with that kind of value and core principal in mind and over the last few years the centre grown and the centre and the centre has really focused on a needs based approach, so what are the needs in the service gaps, currently in Halifax but also cross Nova Scotia and before we actually started any formal kind of formal program we did a needs assessment survey across the province and spoke with some parents and individuals on the Autism spectrum and said, you know, what is it that you would like to see or you know if you had a, you know what would your dream be and of course, you know of course they were dreaming big as they should be but one of the things that really came out was the community integration, you know if they had children, teens or adults, you know it’s that sense of belonging in the community and the centre actually started with teen and adults social groups because the other piece of it was you know parents with younger children identifying while they’ve got school, you know, the early intervention was getting better but as they grew up, because Autism is a life spam disorder, services really slimmed out even slimmer when they were when they were children and there is absolutely no services for teens or adults on the Autism spectrum so we really started there and began to grow our services, so as we grew our services, we continued to listen to parents and individuals on the spectrum and what were there concerns and again looking at service gaps and we continue to expand over the years and started an Autism arts program in partnership with the Art Gallery of Nova Scotia, 3 years ago now and that actually offers children on the spectrum from ages 6 to 15, so that was actually our first program we started to look at including younger children.  We still run our teen and adult social groups and we have probably about 24 individuals that come to the centre within those groups weekly and as we continue to grow and move on, we began to notice that employment was a huge area of concern not only for parents but…

Tova:            Right, I want to stop you there because that fascinates me, much like in the past with the HIV community, there never use to be discussion of back to work in HIV and today it’s much like that I think in the minds of many people.  Autism and a work program, really, and I think that because of some of the stigma that, I know you, you know all to well around the Autism spectrum and people living with it, there’s obviously going to be a lot of people at home right now saying “there going to work ever?”  Like that’s ever going to happen, and of course that has a lot to do in my mind with us perhaps seeing one or two movies that depict Autism in a certain way and we’re thinking “that’s it” and you and I have both discussed before the show, people don’t come with instructions and obviously each individual has to be treated as an individual and therefore what’s going on with them is going to be uniquely their experience but you mentioned that as an agency you evolved to the point now you are looking at programming that supports people living with Autism in getting basically to work.  Now before we get to that point, I’m gonna pull you back a little, I’m so excited with that piece I want to save it a little, but what I want to ask you first is, can we just do a little background talk around Autism.

Cynthia:  Sure.

Tova:            Because I think it’s really like I said, too many of us have learnt about Autism through media, through dramatic stories, TV movies of the week which are always the most extreme cases on a good day, and I guess what I wanted to ask you is, what are some of the things you here or get from families or people not involved in the Autism community that are some of the really myths.  I guess I have to say, what are the myths out there about Autism that you’d like to correct some of those and that’s really important to me to start off because I think some of these programs are talking about clearly address change in some of those myths in our lives.  So if you wouldn’t mind sharing with me, what are some of the things that we’re all thinking about Autism that really, you want to straighten us out on.

Cynthia:            Well, you know, I think one of the stereotype’s of Autism is that you know, individuals of Autism don’t show any form of emotion and you know that, that’s not necessarily true.  You know I know a lot of children and adults with Autism who are probably more emotional than you and I and are able to kind of express their feelings and there’s a lot of strengths with Autism, you know there’s, with Autism you know there’s an acute attention to detail, there’s you know the ability to focus for long periods of time, longer than perhaps someone who might be more typical can focus on very fine, fine, sometimes mundane details, you know, there’s a strength of 3 dimensional thinking, it’s very, you know, and although I think part of the disability with Autism is a social interaction piece around, you know, they don’t always pick up on the social rules because that’s part of the challenge with Autism, but there, it’s that honesty piece that in some situations is really quite refreshing and we don’t really recognize that, you know kind of in a day to day light.  Now you know Tova, the other thing too is are there are many people who are living with very profound Autism and you know they may fit more of the stereotypical thing that you might see in the movies and you know, that requires a very different level of support but you know I guess the message I want to get out today is you know, Autism is not always Rainman, you know…..

Tova:            Right.

Cynthia:  .,,and that’s one of the big stereotypes.

Tova:            That’s right.

Cynthia:            and that’s what we say, you know it’s not Rainman, it is a spectrum, and you know you’re going to have some people on the spectrum who are more profoundly impacted than others but the strengths of Autism are really almost undiscovered by the workforce and imagine, imagine if you were an employer and you have somebody who is absolutely meticulous about getting to work on time, when I say on time Tova, I’m not talking 2 minutes late, I’m talking right to the second for some, right?  I mean, right to the second there going to be on time.

Tova:            attention to detail…

Cynthia:            They will not miss work, I mean we had a volunteer in our centre, who we always tell this story, it was his Father’s birthday and he’s a grown man and his Father wanted to go out to brunch, take him out to brunch because it was his birthday and he said “oh no, I can’t do that, today, is my day to work at the provincial Autism Centre, I’m doing data, they’re relying on me, I have to go.”  I mean his father had to call in and get our permission, right, for him to miss work.

Tova:            They take it very seriously and good for him.

Cynthia:            So it’s that dedication right, it’s the reliability, it’s the know you, that this is a reliable employer, never going to have to worry about this employee, or somebody with Autism in the workplace, you know hanging around the water cooler, talking about you know the office gossip because……

Tova:            That would be helpful to a lot of offices wouldn’t it?

Cynthia:            I know, absolutely, and you know for some, you know based on their strengths, you’re going to have an outstanding and long term employee, with in today’s society, with, if you look at generational studies, that’s really, that’s really challenging for employers to find someone who, who has that skill set and the strengths.

Tova:            So, starting off, what I’m hearing is what we want to remember as we’re learning from you today, is one of the main things we want to remember is not to just look at those media stereotypes, to understand that it is spectrum, meaning a spectrum of possibilities and therefore people can’t be just like “oh, I met someone with Autism, I know what to do”, and that’s certainly one of the things that happens?

Cynthia:            Yeah, we always say if you met one person with Autism, you know one person with Autism.

Tova:            Oh, that’s a great line, I love that.  Well, what we’re going to do is we are going to come back and talk about your programming that I sort of stalled you on because I first wanted to get a little more information on Autism, and so when we come back, I would like to talk more about your specific programming and the fact that you really have 2 roles, you obviously have a role with your clients but you also have a role with the community in sending those key messages out and I’m excited to hear how you’re doing both.  This is Tova at Inclusion Revolution, we’re going to be right back on Eastlink TV after this break.

Tova:            Welcome back to Inclusion Revolution here on Eastlink TV, I’m your host Tova Sherman, joined by Cynthia Carroll from the Autism Centre and we’re awfully pleased she’s here cause she’s teaching us an awful lot about what we don’t know about Autism and also going to share with us some of the best practices and of course programming that is being offered by the centre in support of persons living with the whole spectrum, potential spectrum of Autism, and I keep saying spectrum because I’m trying to really drive home the fact that it’s not a single sort of, what you said, single one person I’ve met them as you said we’ve met one person.

Cynthia:            that’s right.

Tova:            I’m going to be using that so….

Cynthia:            great.

Tova:                        if anybody hears it, pretend it’s just pretending it’s mine. (laugh).  When we broke, I promised we would get into some specifics about the programming you’re doing and I’m really interested in hearing from you again as I mentioned about how you’re coping with both sides of need because as for most of us in the disability community we have the client that we focus on providing supports or strengths to but we also have a community that doesn’t really get it and sometimes without providing them that understanding and education like we’re trying to do today it’s very difficult to take that employment ready person with Autism and match them with someone if they don’t get it too.  So, I’m really interested in hearing how you’re dealing with both sides of that equation and I think you’re employment program is most fascinating to me because again, I’m one of those people that didn’t necessarily know that you know, Autism and employment could be used in the same sentence, and so I’m excited to hear a little bit from you about how that’s working and how you’re able to support both sides of the community to make it work.

Cynthia:            Yeah, well, our program is called Autism Works and it’s a program we’ve been developing well probably approximately 2 years and it’s starting to come to life now, ah, there was a lot of pre planning to that but it’s exactly what you said Tova, it’s that Autism education piece in the workplace because we’re almost starting from scratch, you know diversity training in the workplace doesn’t often include Autism, and you know employers are encouraged to hire cross disabilities they probably don’t think of Autism when they even think of cross disability because of all the reasons you mentioned before.  So, our Autism Works program really supports the client and gets them in and talks about whether their special interest are and were are their strengths, we do have a test called the T-Tap that we ah can walk the client through and that will identify all of their strengths, their areas that they need support in, that’s very unique and specific to them.

Tova:            So is this a test, forgive me, just cause I’m interested…..

Cynthia:            um, hum.

Tova:            This is a, ah, a test that is something that has been universally used is it something that you’ve been able to take and then refine, or is it just where it needs to be and you’re just utilizing that tool.

Cynthia:            Yeah, it’s a little bit of both, we’re kind of, we’ve refined it a bit, it can be in-depth or more of a general test depending on the client, you know if the client has higher support needs then we would probably do a more in depth testing because that particular individual likely might need a full time job coach in the work place for example where someone who had lower support needs might just need general strengths versus, you know where would the social accommodations need to incur with that particular employer.  So what that really helps us to do is when we do work together to place someone in the workplace, you know that employer is aware of the strengths of that individual but also the areas they might need support in so your educating the employer on you know what these are the strengths of this particular individual and these are some of the areas of support, and here’s some suggestions on how to support this employee and as well as other employees still can learn about Autism so that that person can be successful over the long term.  And this particular test actually came out of division teach which is in North Carolina and they have been running a successful employment program specific for Autistic adults.

Tova:            It’s nice to not re-invent the wheel, but maybe even improve it a little bit.

Cynthia:            That’s right and they have an 89% retention rate so…

Tova:            That’s incredible.

Cynthia:            It’s amazing.

Tova:            89%, I have to repeat it in case someone missed that.  Cause that really is incredible.

Cynthia:            Yeah. So it’s a structure teaching style but it’s a great teaching style so we don’t have to re-invent the wheel, on the side of educating the employer, we are actually getting ready to do a large province wide Autism education piece to targeting employers on the strengths of Autism.

Tova:            Great.

Cynthia:            …and encouraging employers across Nova Scotia consider Autism when they’re looking to ah hire employees.  So, we’ve had incredible success so far with our current program, and…

Tova:            Let me ask you this and forgive me for interrupting, I’m a little bit of an interrupter.

Cynthia:            Oh, no.

Tova:            …mainly probably the ADHD sometimes I forget the question (laugh)…

Cynthia:            That’s OK.

Tova:            But I’m trying to get it out there.  But, what I wanted to ask you is, on the employer piece, there’s another piece that needs education, I didn’t really address it but when you think about the process about bringing someone to employment, there’s also community agencies that may not be, as you mentioned, Autism specific…..

Cynthia:            That’s right.

Tova:            therefore don’t have that knowledge and maybe don’t have the confidence that you have in that transition piece.  Are we, are, is it necessary, do you need to, or is that piece in place in terms of understanding the community agencies cause for someone who’s been in community agencies, as you know for many years, I’ve got a lot to learn from you about the employment possibilities and how I can better support because as a cross disability person, you know, when I do support a persons with Autism spectrum.  So I’m really interested from you, how do you find agencies or do you even need that link in between or are you just heading to the employer?  Because I find it’s an area we don’t really know a lot about, especially in that cross disability community.

Cynthia:            No, absolutely, and you know, one of the things that we hope at, I mean, one organization can not do it all….

Tova:            That’s for sure.

Cynthia:            and if you think you can do it all, we probably should have a discussion about it why you would want to do it…..

Tova:            Yeah, you might want to pull the off screen.

Cynthia:            Ah, so it’s really important for community agencies to work together, we do work together, I mean we work with Reachability, we work with other employment organizations in the city for sure, you know, we’ve been contacted by employment organizations in the Valley, on the South Shore and really what they’re looking for is Autism education and awareness and training of job coaches…

Tova:            Absolutely

Cynthia:            So part of the other thing that we’re doing is we’re actually heading back down, we’re heading to North Carolina in March, is to start to put that comprehensive training in place for job coaches because the realm of it is, is even the Provincial Autism Centre isn’t going to reach tip to the Province but by working together with community agencies, and training as many people as we can, about Autism and about how to support, you know how to support somebody with Autism or suggestions about how to support someone with Autism in the workplace and also the information for employers to get that across Nova Scotia, I mean that’s a huge success for us.

Tova:            Absolutely, and so many people miss that piece, that’s why I wanted to bring it up, because there really are 3 or 4 players in everything, I always say there are 3 wins, you know covey to win, win, I say win, win, win because what I see is agencies in the community need that information and if you’re there to provide it, that’s a best practice right there and then of course you’re educating the employers and you’re working with that side and then of course you’re working with the individual, I know you do have a job developer whose role with the actual client is, is, the client with Autism is, is quite extensive as well.  Could you tell me a little bit about the work your doing with the clients because I think I have a sense of the employer, you’ve done a great job expressing how your partnering with different agencies around the province, but can you share with me what happens when someone maybe whose watching says, you know, I’d like to join that program or I’d like to promote somebody I know living with Autism to come to that program….

Cynthia:            Yup.

Tova:            …can you tell me a little bit about what they’re going to experience.

Cynthia:            Well again it’s all individualized so it depends on when the client approaches, you know what age they’re at, do they have any prior experience in the work place.

Tova:            What are the ages that you’re working with right now?

Cynthia:            You know it’s interesting, we get calls from um, teams, like 15 parents calling right up to you know 40.

Tova:            Well good for them for wanting to get involved early in these processes.

Cynthia:            And the program really is designed to, to start, there is a pre-employment phase too that’s not overly active yet cause we’re still kind of in the development stage, but we all know that, what we do know is that children with Autism when they hit their teenage years don’t have the same opportunity as their peers so that’s really important to kind of get them into even volunteer into volunteering so that they have opportunities just like you know typical peers right, and that’s…

Tova:            Great experience builder, we know that.

Cynthia:            Absolutely, so if they’re younger, if they’re 15, 16, 17, they have no prior experience it might be starting them off even volunteering in the community to kind of gain, what are they interested in.  So they do, do an online kind of special interest, um, survey and finding out again what their strengths are, you know we got the T-Tap so or if they come in when they’re a little older, what’s their past employment history, what are their experiences, you know positive or negative, have they worked with other agencies?  There’s a very intensive intake process…

Tova:            Because you need to know everything you possibly can about…

Cynthia:            Absolutely.

Tova:            …that person before you make decisions on how to proceed with them.

Cynthia:            Yup.

Tova:            So, we’re going to take a very brief break because when I come back I sort of want you to finish that client experience as best we can…

Cynthia:            Sure.

Tova:            Without making it specific cause I get that people don’t come with instructions (laugh), and I’m learning lots from you already.  So, this is Tova from Inclusion Revolution with Cynthia Carroll and we’re going to be right back in just a few moments here on Eastlink TV, don’t go anywhere.

Tova:            Welcome back to Inclusion Revolution, I’m your host Tova Sherman here on Eastlink TV and again to remind you, we’re very lucky to have Cynthia Carroll here from the Autism Centre and when we broke, we were talking about one of your new and what I consider to be revolutionary ideas and that is Autism works which is the employment program matching up employers, educating the community and preparing to allow and engage person with all types of Autism in the work place.

Cynthia:            Yep.

Tova:            Now, when we left, we were talking about the client experience, which I thought was really important for our viewers to hear a little bit about, just to give them a sense of if they call you and of course I know you have a number of other programs they should look into as well, but just as we’re on this piece, we’re going through the client process.  So far we’ve gotten through an extensive intake, we know a little about this person, certainly enough to make some decisions, now what happens?

Cynthia:            Ah, then of course we look at a good fit, you know, someone who has you know wants to be greeting the public all day, you know, if we put them behind a computer screen they’re probably not going to have success or vice versa, so really trying to find a fit and an employer that would be willing to hire the individual and then kind of going and we stay with them for the first little bit as they get settled and start to really kind of assess the workspace.  And, ah, with Autism, visual support is really important, and when I say visual support I don’t always mean pictures on Velcro, although that is, is for those with higher support needs that’s very helpful but just making sure you know consistency of routine is there, you know hey they know transitioning, if it’s one activity to another, that you know transitions are smooth and making employer aware of, a lot of that and also to support….

Tova:            So year round…

Cynthia:            Yep.

Tova:            So in other works, you might drop in and once you’ve made that match, how have you, have you, I mean I know the program’s new so have you had the opportunity to match some people up with employers?…

Cynthia:            Yeah.

Tova:            …can you tell me a little bit about first of all, how did you get the employer online?  Did you provide the education or was this just a really, they got it employer if you know what I mean.

Cynthia:            No, we’ve actually been quite active in going out to the community and meeting with employers and giving them presentations on Autism and also talking about the strengths of Autism, we did an employment video that you can see on our website which we have some testimonials from….

Tova:            and the website is?

Cynthia:            www.provincialautismcentre.ca

Tova:            So we should check out the video.

Cynthia:            You should it’s right on the front page…

Tova:            I’m on it, I’ll get there as soon as we’re done.

Cynthia:            and it actually has some testimonials from employers around you know the benefits of hiring someone with Autism, so it’s really nice, so that video allows employers to speak to other employers you know, cause of course we’re going to talk about the strengths of Autism because we know them and we know them quite well, but when an employer starts to talk about and echo the same thing that you’re saying because they have experienced first had, it really starts to build that community and open up the awareness and that’s something that we’re very pleased with so…

Tova:            and in our Inclusion Revolution of course, that’s exactly what we wish the entire community would do is follow that lead of getting everyone involved, educating everyone involved because you and I both know that the stigma is the greatest barrier to inclusion and you know what’s interesting is when you tell me about the things that you do to integrate your client, it’s really things we do with everyone, orientation, ensuring that they understand the job, now whether understanding the job demands a little more graphic and a little less oral?

Cynthia:            Yep.

Tova:            It’s a matter of accommodation I always say it’s about equalizing the playing field, not special accommodation and this is a great example of just providing and equalizing the playing field for that client and in turn with employers understanding, you got a fantastic opportunity and of course, every client you’re putting in there I see as the ambassador and the ambassador for persons with Autism and that’s invaluable on even another level because we both know how difficult it is to change the way people perceive….

Cynthia:            Absolutely.

Tova:            And again to fight those media images, which is what Inclusion Revolution is all about.  So, just as, before we wrap up a little bit with you, can you tell me a little bitty about the success and what’s, what’s made you most satisfied with employment, with the Autism’s work piece?

Cynthia:            I think for us, what’s made us, you know, there’s so many little successes that lead to big successes but just for us to finally have a program that individuals can come and experience success you know when, when we get the testimonials back of the impact it’s had, not just the employer raving about you know the employee with Autism whose been outstanding and such a valued member of their staff but also the empowerment that, that individual in the workplace has and their sense of community integration and you know finally you know, it’s that sense of belonging that we all want in our community and you know we all need something to look forward too when we get up everyday and people with Autism are no different you know, we all need those routines, we all need…

Tova:            We’re still people. (laugh)

Cynthia:            We all need to feel valued in society…

Tova:            Absolutely

Cynthia:            …and feel like we’re contributing and I think that’s the most exciting thing about the program is that you know, everyone who wants to contribute has an opportunity to contribute.

Tova:            And that’s very exciting.  Now we just have a little time left so I wanted to read a little bit about our news and our poll which we do every week but in this case in hour of you being here we wanted to focus off…

Cynthia:            Very good…

Tova:            I don’t know if you’re gonna think so but first of all our news today comes from CNN.com and the medical journal the Lansit actually retracted, very unusual, retracted a controversial 1998 paper that linked measles, mumps and rubella, MMR vaccine to Autism.  So they’ve actually done some additional studies and now they’re suggesting that isn’t the case.  So that’s already controversial.  But our poll today is to ask you, do you think that environmental factors contribute to Autism.  What are your thoughts on that?  Go to inclusionrevolution.com, look at the news, look at the poll, we’re going to link you to the Autism Centre as well because we want you to get to know Cynthia and all the wonderful things she’s doing, we really don’t have enough time to get into everything because Cynthia, I find it fascinating what you bring to the table and I want to congratulate your centre for being so extraordinary and supporting us, really what is often seen as a silent part of the community that doesn’t necessarily have a voice and I think that you’re providing an extraordinary one and for that I congratulate and thank you from Inclusion Revolution for that.

Cynthia:            Thank you Tova.

Tova:            So, for this week we’re going to wrap up, I thank you all for joining us, it’s Tova from Inclusion Revolution .com if you want to come visit us here on Eastlink TV and we will see you next week and we can’t wait, see you then.