A Q&A with me about ASD, myself and living independent. At a small local parenting group.

  • NB: So! Recently I did a small talk with some parents on Autism Spectrum Disorder and about how it is for me as an adult living with it independently outside of a home and in my own space. And so I thought I would post the transcript here.

    I made them show me “most” the questions in advance so that I could do it more easily and it was quite fun! So that’s why my answers are so much longer than they are normally when I talk with some of you in person, I know when I showed someone they said wow you spoke a lot more than normal! 

    It was recorded it and so my friend transcribed it to print out for them and I asked for a copy to put here. I was told it could be helpful for parents so maybe it will be useful for someone else out there, I am not sure !! I hope you all enjoy it.

    (Sorry if its edited bad! I had to change it to make it readable in the wordpress)

    ASD = Autism Spectrum Disorder (The formal label for those with Aspergers and other Autism related disorders

    J = Jill (My friend and person who asked questions!)

    M = Matty! (ME!)

    Q = Question  (Questions I was asked, most on behalf of others not my friend Jill)

    A = Answer, (Clear answers from me to the questions)
    NGO = Nongovernmental Agency

    WINZ = Work and Income New Zealand.

     

    J - Hello everyone, as organized last week, today instead of our usual meeting I bought along MattyAngel along, Matty is a friend of mine who is 23 years old now and an adult with a bit more than just mild ASD who is living independently, Matty is a promising writer as many of you know and hopefully future book author! And well, Matty is an all around sweetheart! I asked you all to write some questions down last week thank you to everyone who sent those in.
    J - So lets get started.

    J - Hello Matty!

    J - Welcome to our little group! Ready for the questions!

    M - Yes, ok! I will try my best-est!

    J – You will do great! Ok, these first ones are about support.

    Q. How many support organizations and people work with you?

     

    A. I work with quite a few and some people tend to forget about them. I work with a disability advocacy first of all which is Lifelinks, they are a local NGO who appoints and oversees everything, then CCS Disability Action another NGO who helps represent me outside of my environment and support me. Both of these organizations help me so much and words can’t express how much I appreciate them both. They also help with dealing with problems with other organizations when issues arise.

    From there I also have a bit of contact with Autism New Zealand a few times a year (A catch up) they are wonderful and kind, I also have another NGO who deals with home personal care that I won’t name.

    There is I also have WINZ who support me financially, and more specifically a person at WINZ who deals with me by email, she is wonderful and I owe a lot of the the setting up of support such as counselors to her efforts to see me live within the community.

    When I did a bit of study there was also Studylink who deal with the financial side of studying and the university in-house support services. All universities have disability support services, people must remember to contact and inquire with them when thinking about study to ask how they work as they all function differently.

    I also have a counselor and count them as a support and of course my GP.

    There is also for me, a few other support agencies who assist me concerning my physical, mental health and well-being who also support me.

    Because of my inability to talk well without time to think clearly, I deal with most of these people and organizations by email. They are wonderful and patient. I am so glad they are willing to work with my communication issues in order for me to take a bit of management for my own care and support.

    I have come very far compared to where I was even just a few years ago. But without this support I am unable to cope very well. I am so lucky to have them all and I hope one day I can earn money and have have my own books and care for myself!

     

    Q. As an adult living independently with support, how many hours of support do you actually receive. Do you actually get the support you require or do you?

     

    A. I Receive 7 hours personal care in the mornings each week,  I also receive 3 and a half hours total per week for the evenings. These are also safety checks on me, and to make sure I am actually there and not lost somewhere and everything is ok. (I do get lost some) I also have some house care. And available to me some hours support care who help me with Grocery shopping, small tasks like going to post-shop etc. Those hours are not always used up.

    The way I understand it I have 3 kind of care and support. Each providing a role really important to my well-being.

    1. My personal care, (Me Myself)
    2. My house care (My Environment)
    3. Grocery shopping, advocacy in appointments etc (Me outside my Environment)

     

    Q. Do you think your care and support needs are met?

     

    A. Yes I think with Lifelinks and CCS and on occasion Autism New Zealand I believe my support and care needs are more than met, In the beginning my hours of care and support were very limited but they worked with me, especially through the Canterbury earthquake to fix any issues there were and make sure I was safe. I have a lot of praise for them. Especially my Lifelinks care managers who have always been friendly and nice to me.

     

    J - This is from a parent of a child who is non verbal

    Q. You write and communicate so clearly,  why is my child unable to communicate as clear as you?

    M - Thank you for the nice words! I like nice words.

     

    A. I believe that we all, no matter what being, creature or critter we are, have the ability to communicate. Sometimes we just may not be aware of what the communication is. It could be as simple as a breathing pattern or kitty meow or as complicated as speech. Writing for me is how I communicate and as for talking, you can see that I am a bit slow and find it a bit hard to get all the words out. I also may not understand all the words I am asked, which is why we had to review the questions you were going to ask me in advance.

    I am not always so clear and so good. When I have a bad day I shut down and can’t talk. I also can’t talk very well on phones. I tend to stick to written communication where things are clear. Environment for me is important.

     

    J - This is a more general question about your writing.

    Q. Your stories are becoming rather popular and we have seen you talked about in a few places including the poem published in the December 2011 Widening Horizons CCS Magainze.. Do you think they are influenced by your ASD?

     

    M - Really? NEAT! I am so glad people like my words, I love that very much. My writing is special to me

    A. I am not sure if they are or not, but I do put a lot of myself into my stories and a lot of experiences so I guess they are! I was very proud of that poem being published there. I know that one was about me having ASD so that one there is of course influenced by my ASD.

     

    J - These next to have to do with Earthquakes and all the environmental changes you have gone through lately

    Q. How do you cope with unexpected events happening, such as earthquakes?

     

    A. Well… I will be honest, its really hard. I was very scared through the earthquakes and even now I am still scared. I was lucky that I had some good people take care of me, but I did shut down and barely talk through it. I was also very confused and my thinking was a bit muddled. I was lucky in that I had a friend of mine explain to me what to do in emergencies so when the time came to evacuate I did what I had been taught and shown, packing emergency supplies. Some mistakes were made though such as forgetting my medication but in the end everything worked out.

    In general other than earthquakes. I am much better with things happening than I am now, but I do have bad anxiety sometimes. I have abandoned the shopping trolley at the supermarket more than a few times. I do better in familiar environments so after a few times things have gotten much better.

    Part of what helped me with this was slowly introducing random things into my environment.

     

    Q. What kind of random things were introduced to help you cope?

     

    M - My kitty-cat!

    A. My kitty-cat, she is the best-est random variable, I think that’s the word… in my environment. I owe a lot to Animal Assisted Therapy. Animals have improved my communication, my ability to think faster, my understanding, expectation that my environment is subject to change… and although I struggle with emotions they have improved my understanding of what care and worry are. I love my kitty-cat very much.

     

    J - From that question, this question is from a parent here with a younger child on the spectrum. Her child doesn’t hug her and she sometimes feels that she is not loved by the child,

    Q. Can you explain what emotions are like for you?

     

    A. I feel things to! I am not a Robot. Have you ever seen the TV show big bang theory? Sheldon Cooper acts like he has ASD a lot of the time. But on one episode everyone convinces him he is a robot because of how he acts and feels… I like that show.

    But I do feel things. I do love, I do care and I do worry… I like to believe ASD is not a lack of empathy, but a lack of understanding other peoples body language to feel empathy. For instance I am a much better and understanding sympathy when it is written down or I am told directly than when someone says nothing and is right in front of me.

    I have become very self aware of my feelings and put a lot of research into them as I have gotten older. The thing I mostly have problems with is understanding those feelings. The word love especially. What is love? I am still doing a lot of research into that! A lot of time I get very frustrated and can even cry or stomp my feet and be a grumpy-butt when trying to figure what feelings I am having out and when I do that I am even more confused why I am doing that! I think that the lack of understanding what feelings I was having were what caused me to melt down and cry and be a bit violent when younger. I am not violent now and cope much better as I have gotten older and have had the ability to spend time and figure out these feelings.

    I believe to that parent, her child with ASD does love her, perhaps the child may not understand that they do just yet and be unable to show it for not, that could change in the future. It took me a while to figure out that is what the feeling I was having when younger. It is complicated even for people who are not ASD

     

    Q. You avoid eye-contact, why is that? We have a text-book answer for why ASD adults and children do this… but why do you think you do it?

     

    A. I have trouble reading and understanding the facial expressions of others. The eyes move a lot and can show all sorts of things that I can’t understand at all. If I look at them I get frustrated and upset. I have to try guess what they mean. Are the surprised? Grumpy? Scared? Afraid? I also get upset if they are things like Scared, Am the one causing them to be afraid? So Avoiding eye contact avoids me being overwhelmed with feelings and confusion.

     

    J - This one is from a parent who worries about her daughter and friendships.

    Q. How difficult do you find it to make friends? Do you have many?

     

    M- YES I have some friends!

    A. I have wonderful friends, but not so many. You are my friend! But I do treat friendships differently. There are times I forget to contact friends, and I miss out on certain ques. I do go through a lot of friends before finding the right ones. I understand that I can be an exhausting friend, it is a bit more work for someone to be my friend than an average friendship.

    For instance. When I think of someone, no matter who they are. I send them an email or a text message saying hello. Sometimes that person may feel I am needy or in need of contact right that minute. Really all it means is that I was thinking of them and I tend to act on that thought. When a normal person is sitting down and goes, “Oh. I haven’t spoken to Jill for a while” Then goes about there day. My brain says. “I have not spoken to Jill for a while. I will say hello to Jill” I would not call that impulsive, I think that is the right word? because I think very hard about it all. But I think out things very logically. If I need a drink, I get a drink. If I think I need to talk to someone, I will go and talk to them.

    I also can be bad company if I have a lot of anxiety… I can also go through phases of being really stuck or drawn into a topic then move onto another. These things can be so hard for others.

     

    M - I hope that makes sense. Sorry its bit of a complicated answer.

    J - You are doing great, Another few more questions before we run out of time. This question is from me!

     

    Q. Many doctors or people who deal with children or adults with ASD often say a sign is having no imagination, however you write some of the most amazing and creative stories I have ever read. Why do you think they say that?

     

    M - Maybe imagination, or maybe I am crazy or something! Or maybe my life is so crazy it appears I have imagination!

    (Laughter and pause)

    A. I do like that I am creative. I think they say that because people with ASD think logically? Well I think logically! And I think it is the same for others with ASD. I sometimes get very frustrated with people when they tell me things or say things that don’t sound logical or have logical solutions, the only problem is my logic is not everyone else’s logic! So maybe I think illogically.

    But I do over-think things a lot. This doesn’t mean I don’t have imagination though, it just means I show my imagination and creativity differently. For example. I have trouble playing with children or other adults creatively, unless I am in control of the situation. I was playing with my friend the other day who is 5 years old and we were pretending one person was the dinosaur and the other person was the person going to be eaten! So I was chasing them around everywhere! Though I couldn’t be the person being chased because I had to be in control of where I was going, not be chased somewhere I didn’t want to go.

    But that doesn’t mean I couldn’t play with them, it just meant I couldn’t play with them unless it was on my terms. But then again I think I am good or at least ok at writing and painting.

    Many parents who have children with ASD may not realize how creative their children are due to their children not yet having the opportunities to express and experience creative arts or play in a way that suits the child. Or they may not have just figured out exactly how the child best expresses their creativity or imagination. We all express ourselves differently.I do have to say though that when I was younger I needed more structure with my play than when I was older. For example Lego was great because the instructions were there that I could follow and as I got older I was able to slowly experiment in more creative ways of playing with lego. People have to remember that structured play can lead to more creative and imaginative play, but structured play is creative and imaginative in its own ways also.

     

    M - Sorry that was long

    J - Its was perfect, Here is one last question then we are out of time for this evening. This is a tough question, or at least it sounds tough.

     

    Q. Do you believe people with ASD should not be in homes or special education and should be with the mainstream of society and do you believe people with ASD do not need to be cured?

     

    M - I will think one second

    (There was a few minute pause)

    M - Okay I will try answer this and hopefully it makes sense.

     

    A. I think the groups that go around saying children or adults with ASD should not be in special schools or adults should not be in special homes are very bad.

    ASD affects everyone differently, its specialized to the individual. They all have different needs ranging from different topics of interests to different sensitivities and anxieties and so on. What may work for one child or adult may not work for another. For me, I went to a mainstream school and it was horrible. I believe it was the worst environment for me. I was unable to keep up and function. But I am enjoying myself in the community and in independent living. I enjoy that security of my own environment. Could I have been in the society without the experience? I believe so with the right support.

    But because ASD affects everyone so differently I believe its wrong for one group to go around saying how a child or adult with ASD should live. For some children and adults with ASD it would be impossible depending on how it affects them, for them to cope in mainstream schools or society. They may need more structure and may require more care than I do. Everyone with ASD needs different support and much of that support specially designed for them. Sometimes that support can be just a friend and sometimes like for me I need help to manage and do basic things.

    I really believe that any group that pushes for a special needs school or home to close because its degrading, really needs to spend some time there before deciding that and understand the people who use those services and why they may require a service different to themselves or other children.

     

    As for a cure. I don’t think I need to be cured, but some days I wish I was… but then if I was, I wouldn’t be me? It would make life easier though to have no problems and require no support like I do. Then I could go all over the world and see neat things. But hat being said, I don’t think I need to be cured and by I, I really mean me. Everyone with ASD is different. I know of someone with ASD who is completely non verbal, but they can write like I do.

    They wish to be cured some-what so that they could talk like me. We are not good friends, but we are two people that understand each other. If she could have her troubles such as not being able to talk taken away, she would… The same as someone who lost their hand would wish for it back. I don’t believe its right for those with ASD to say all people with ASD should not be cured, because no one should be a voice for another without their consent. But that is what I think.

     

    J - Thank you so much Mattyangel there were other questions to but we are out of time. You are such an Angel and maybe we will bring you back to finish the other questions we had left over sometime soon. Keep writing we all love your work and you are an inspiration to all and a great hope for many of us parents who hope their children can grow up and be out in the world like you.

    M - that is ok I hope this helped, I know the last talks I have done people have said have helped. I just want to be helpful!


    February 29th, 2012 | Matty Angel | No Comments |

About The Author

Matty is a 36 year old girl who is an Autistic Poet, Writer and Artist and lives alone in Christchurch New Zealand with a kitty! Matty has given many talks on autism and about being unique in a world that's often not accepting, Matty has also engaged with artist and worked on Art projects Matty usually works on an Art project at the same time as a writing one! This means posts can be a bit delayed!

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