Interview with community council member Lisa Morgan

I had the chance to speak with Lisa Morgan about her work in helping autistic adults deal with mental help and suicide, her book, and her work with AASET and partnerships with other organizations working on these issues. Here is the transcript!

Alex Plank: You were diagnosed less than ten years ago but you spent decades undiagnosed. How did you come about your diagnosis?

I was working at a public school and I felt like I was back in middle school again with the social environment and at the end of the year, I wasn’t asked back because they said I didn’t fit in. There was nothing wrong with my teaching. I had letters from all my parents saying that everything was fine. The other teachers just thought that I didn’t fit in. So that was when I went for a formal diagnosis.

AP: And how did you hear about autism?

Through the students I work with. I have a masters degree in special education and I work with a lot of kids on the spectrum.

AP: And you saw things about yourself in them?

Yes.

AP: What was the process like for you to get a diagnosis? I assume you were in your forties?

Yes, I was 46. I have two adopted sons and one of them needed some extra help so I had gone to a psychologist for him. And I just went back to her (she has a son on the spectrum) and I went back to her for myself It was just a matter of taking test, talking, talking about my childhood, college years, everything leading up to that day and then she formally diagnosed me with Asperger’s.

AP: Being undiagnosed for so long, what kind of frustrations did you face, not knowing why?
Well it starts out very young not knowing why I was different from everybody else, just sitting and watching other kids socialize and not knowing how to do it, trying and failing, going through all the bullying because I was different, just never fitting in.

Then in college the same thing, but in different ways. The social scene was a lot different. I had some pretty bad experiences in college due to my autism, not understanding social cues and social situations and then being married. I do believe my husband may have been on the spectrum, he may have been undiagnosed. I can’t really speak to that but he was really the only person I could say really understood me. So that was OK until he got sick himself.

AP: You wrote a book about that. Do you want to talk about that?

The aftermath of my husband’s suicide starting with the night that he was found when I went to the house with the police there was just a nightmare. The first night there was just — Instead of being able to concentrate on what was happening with my husband, it was more the sights and sounds of the police cars — the blinking lights — six of them surrounding me and talking to me and touching me on the shoulder unexpectedly…

Then the advocate there had a dog who just –I’m not a dog person, I’m a cat person– so it wasn’t soothing for me. And she asked a lot of questions and then the detective was asking questions. And trying to regulate myself — I couldn’t look in anyone’s eye I couldn’t even look at their face and just pretend to look at their nose or chin. Nothing was working for me that night. It was just sensory chaos.

And then after that there were arrangements to be made immediately about [my husband] and the house and the kids and his work and insurance and bills and just so many different things all at once– so many different social situations. I couldn’t get my footing for a really long time.

And the book [I wrote] is about hopefully helping people (and I’ve heard some feedback that it has)… helping people to get that footing [after suicide loss] and different things that I finally found to do and people helping me to be able to do the things that I needed to get done.

AP: Is there anything that you think that you want to talk about in reference to Autistic Adults and other Stakeholders Engage Together (AASET)?

AASET is, I think, so needed to have autistic adults being able to voice what they need and stand up for what they need and to advocate in the medical arena. For so many reasons, not even just suicide, but just regular doctor appointments, just so many things. And I’m just really glad to be a part of it.

AP: Could you talk about the partnership with the American Association of Suicidology?

I had written a book and I wanted to do something more in not just writing it but trying to put something in place to help people not go through the same thing I did so I had some emails out to certain organizations and then the American Association of Suicidology was the one that answered me and they then invited the National Children’s Hospital for Special Citizens Futures Unlimited and then Tragedy Assistance Program for Survivors also joined our nonprofit organizations and AASET is also in there.

And the first thing we’re going to do is try to make crisis text and call lines more favorable for autistic adults who call up and need help because right now they’re not –no one has any idea what an autistic adult would need when they call–different processing times, direct questions instead of vague questions. And there’s a few more like that that would help the person who is calling to actually get the help that they need. That’s the first thing we’re working on.

And then there’s some other long term projects to do with mental health and helping the autistic adults to be able to go in and be able to voice what they need and get what they need and be understood.

AP: That was great. Are there any areas in terms of autistic health that you think are really important where there’s some missing link?

I think everywhere. From my own experience I’m never understood unless I go overboard in explaining what I might be there for. And I’m still not understood. And the lights are never ok – things that they want you to where sometimes are just never ok.

You mean just the regular light from the ceiling from the doctor’s office?

Yeah. And it’s all kind of sensory but with the garments they might give you to wear, the way they approach you, the way they just touch you without telling you, it’s not autism friendly at all, I don’t think. And I kind of have always wished that on the intake forms, where they have different questions, that one question could be, “are you on the spectrum” or “do you have ASD?” And if you check that box, there’s somebody back there who’s gonna be working with and say “I have experience working with people on the spectrum so I could go help with this person”.

It doesn’t have to be everybody who is trained with the sensory issues and the communication issues that a person on the spectrum might have trouble with but just maybe one or two just to help that person along, know to ask the direct questions, and just to help them.

AP: What can people do to try to improve things for the better?

I think right now, I think the first step would just be awareness and starting the conversation and training and having people understand how it is for people on the spectrum to go to those places and try to get help. It’s really very difficult.