All day I think about it, then at night I say it. Where did I come from, and what am I supposed to be doing? I have no idea. My soul is from elsewhere, I'm sure of that. And I intend to end up there...Who looks out with my eyes? What is the soul? I cannot stop asking. If I could taste one sip of an answer, I could break out of this prison...I didn't come here of my own accord, and I can't leave that way. Whoever brought me here will have to take me home.

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09 March 2009

World Autism Interviews: Alyson Bradley/New Zealand

Cracked...segregation...dreamlike state...survival
Port of Lyttelton
Alyson's world
Alyson and her two sons

Interview with Alyson Bradley

Alyson Bradley was born and raised in London. She now lives in Christchurch, New Zealand with her husband and two sons. She is Asperger's autistic, as well as dyslexic and dyspraxic. Alyson is in the process of writing her first manuscript. She also runs a website called Aspergers Parallel Planet. Her other endeavors include collaborating with the New Zealand Ministry of Health Autism Spectrum Disorder branch on several causes, such as the Implementation Guidelines Group. She is also involved with a charitable trust that provides support to spectrum adults called Autism Spectrum Kiwis Trust New Zealand (ASK Trust NZ). Alyson's older son is also on the autism spectrum.

E: Tell me about your life in New Zealand. Also, how old were you when you received an Autism Spectrum Disorder diagnosis?

Alyson: My life in NZ is a long one, but in short, one of my better moves in life. It gave me the time and space to re-look at myself and to start to understand my mysterious differences. I feel privileged where I live now. I live in a great area with lots of trees and walks nearby and also with amazing views.

London was slowly crushing me. I never realised the reasons behind my problems and misunderstandings, as well as why such an intelligent person as myself found life at times so unbearable.

Moving to New Zealand gave me peace of mind and the time to self discover, as well as to find the missing broken parts of myself. Now life is itself. I do not only have Asperger's but also other associated conditions and neurological differences, along with a mix of of complex extremities. Being diagnosed with many overlapping, inner-acting differences, I just knew I had to reach out and help others to understand. To think of anyone as lost as I was for so long, living in the shadows of life, does not bear thinking about.

First, I was diagnosed with intellectual learning differences, which gave me a great insight into my strengths and weaknesses. Less than 2 years ago, I was also diagnosed with Asperger's at the age of 48. I am to be 50, in a few weeks time, and I have a feeling that this is when my life will truly begin--I hope so.

I try not to look back over my past life, as there are so many things I would rather forget. What a roller coaster I have been on, but I feel I have survived the big dipper and my hectic research in these past years has helped me to gain so much insight, as well as to develop a sense of inner peace. My older son was diagnosed later in the same year as me--November 2007--just after his birthday. What a present!

E: Is anyone else in your family on the spectrum?

Alyson: My wonderful older son, who is now just as proud and happy to be an Aspie as myself. Our only problem continues to be a lack of real awareness and understanding from others.

There is a huge history of possible autism in my extended family--some now diagnosed and some not wanting to know. In fact there are many others in my life that are quite possibly on the autism spectrum, but not necessarily ready to take on the label. To be honest, I do not feel it should be about that anyway. But as I have learnt the hard way, I may not always have been understood, but I also did not understand others. Due to this, I feel I may have unintentionally, at times, hurt the ones I love most.

E: How has your life changed since moving to NZ and what is the general situation for autistics in NZ?

Alyson: My life has not always been this way, as I will always remember where I came from. As a child, my family went through evictions, homelessness, and we lived in various homes. So as soon as I could, I worked. My differences, however, caused me much pain at times. I feel I deserve to be where I am now in life.

The life situations of autistic people in New Zealand varies. Those of us on the autism spectrum are as diverse and different as anyone. The population is quite segregated here and so it's hard for me to tell.

I feel I am still hiding behind closed doors--a safer place it seems for many still. The people I have met share stories of let down and often pain. The one fact that often comes to mind is the isolation and loneliness for many autistics. In that sense, I am thankful that I have a family who supports me. Here, in NZ, I live a life more fitting to who I am and it has given me the space to do the things I maybe always should of done when younger--things like painting and writing. As for the real world, I feel unemployable here, so I continue to try and prove (if not over-approve) myself until a another door opens, as I cannot afford to stay hidden forever.

E: Does New Zealand provide adequate services for autistic people?

Alyson: No! For children, there is some segregated support. Oftentimes, parents enter an endless battle of getting funds for any real support. Usually this ends up being a big financial pressure to the family of the child, putting more stress on often an already stressed family.

As an adult, when I was diagnosed, I was in shock at first. I had nowhere to turn, not wanting to pay for professional help, as have never liked to take medicate. The only advice I got was to medicate--no thanks! I knew what I really needed was to talk to like-minded people so that I could sort out the many thoughts racing through my mind.

The main groups here are all run by mostly non-autistic people who mean well, but can make you feel subhuman. So I started searching and reaching out. Then I wrote my first article to help raise awareness and to help me make sense of things. The computer has become a great friend.

E: Where is the most improvement needed--for autistics--in New Zealand?

Alyson: There are many individuals still living in the shadows of life who were bullied when younger and have never found their place. These adults need support and also need to be given a chance. A chance that was stolen away from them in having never been allowed to be who they were born as.

As for children, I remember the frustration and pain myself and hate to think of any child suffering in this world. In regards to autism, society in general has not embraced or recognized the bigger picture of the autism spectrum. And until the whole school systems, society, etc. begins to change, those of us more neurologically different will always be slightly at odds with the world.

Parents of children on the spectrum have often criticized me because I do not like the words "fix" or "cure". I understand parents wanting the best for their children--don't we all--but the battle should not be between parents of autistics and autistic individuals. It should be with the governments. There has to be a middle ground for real change. We all want for our children to be accepted. These children will only fit in if societal attitudes change and begin to embrace, as well as raise awareness and understanding for all. I feel its about time everyone embraced the ASD community and allowed us all our differences.

When I was younger, autistics were institutionalized. Only now are they are beginning to be understood. Progress does not happen overnight. No one can be what they were not born to be and they should not have to be. For example, no one would insist that I change the color of my skin to fit in. Finding, allowing, and accepting my autistic core and heart, and allowing the person inside who I was born to be to come back, has been one of my main joys in life.

E: What services, for autistics, in NZ are run efficiently (if any)?

Alyson: There are many good people trying to help in their own way, but there is far too little and often misguided information out there. I am working with The New Zealand ASD Guidelines Group, but I cannot help but wonder how much will just be unimplemented policy and how much will get filtered out via the huge hierarchy of top-heavy management systems.

Here's a few autistic and public comments from the Guideline Summary to give you an idea of what we are up against in NZ:

"It's like attacking a seven-headed monster! You don't know which head to attack first!"

"It is not wrong to think in a different way."

"I have not recovered from autism. I believe that no human being should be ashamed of who he or she is."

"Parents become highly educated out of necessity, not out of choice."

The National Autistic Society, in the United Kingdom, has come along way since I was diagnosed. Sometimes for that reason I wish I was back home in England, but I am dedicated to helping educate the NZ people about ASD.

E: Do you consider yourself a member of the growing Autistic Community (by this definition)?

Alyson: Yes! And not only have they been a great lifeline, but they have become like an extended family--thank you!

E: What is most appealing to you about the worldwide Autistic Community?

Alyson: Because Autism is a worldwide issue, it affects us all in the same way. It has no class or race barriers and it's invisible among us all. In so many countries and places, it is often kept as a hidden secret. To some, it's a shameful secret! But worldwide I feel the tide is turning. We are extending new rays of hope to autistics who are lonely and possibly *hidden*. The Internet is one thing that helps me to connect with the bigger world community. Like my invisible difference, it’s my invisible connection, as well as the way I often prefer to communicate.

A person from Oz (Australia), who I've met on my journey, puts it this way:

“A wave powered by a strong tide, becomes a force to be reckoned with. It will be seen, heard and felt by many. Some people will remain unaffected or uncaring, but others, who have not noticed the ripples before, may turn, notice and begin caring" - Louise Page

E: Please share your tips for how best to communicate with a person on the spectrum.

Alyson: At times it's like I just need to talk and to be heard. And I don't always need a response from others. There are times I have been ignored and told to be quiet because others do not have the patience to communicate on my terms--never mind that I often communicate on theirs!

I never have and never will communicate totally like everyone else. When younger, either silence or my verbal dyspraxia kicked in when I became nervous. It caused me to speak in a jumbled chaos--I was a great bully target! I still jumble my words and repeat at times, or go off speaking on subjects no one is listening to or talking about. I know at times I shouldn't, but I now have the confidence within myself to now say, "Hey, that’s just me."

We can teach our children how to fit in or how they should act, but that does not mean they will ever be happy doing so. I will always be the extra awkward one when meeting new people or the one ranting on with no one is listening. I feel it’s more important that confidence is instilled in being who we are. Would you tell a blind person its preferable they need to see in order to fit in?

Forcing someone to talk is pointless, they will only withdraw more and it just creates stress. Coaxing gently is okay, as long as it's not forceful. ASD children can be "on" or "off" when it comes to talking. Forcing speech during an "off" mode doesn't work! I see this as abuse and it only leads to frustration, meltdowns and shutdowns. We all should be allowed to communicate how we most feel comfortable, otherwise we can end up feeling like performing monkeys!

My advice, if you do not understand someone, is to re-look at *self* and be more open-minded to how others communicate, as one hat does not fit all.

E: Tell me about education for children who are on the spectrum in the New Zealand. Are there special programs and classrooms? Mainstreaming? Accommodations? Legal protection?

Alyson: It is so varied, but in general, even if you get funding there often is just not enough good specialized support in New Zealand.

Its has been said that 40% of all school children have some sort of neurological difference (includes ADHD, ADD, Dyspraxia, dyslexia etc...). ASD is a neurological difference. Neurologically, maybe there will be more of us one day, the tide seems to be turning as many step forward and tell their stories.

If you're an adult in New Zealand most of the time you would be on your own if it was not for the Autistic Community.

E: Give me the gist of how disability is viewed in the New Zealand. Are people open and accepting, as well as understanding? Or do people deny disability and avoid it when possible?

Alyson: Generally people here avoid what they do not understand. When I have tried to explain myself to people who I feel I know quite well, I get that knowing nod, the fixed smile that lets me know that they are not really listening, or wanting to understand. Maybe some people are just not capable of understanding. Oftentimes, unless I am around like-minded people, I am made to feel subhuman. I have been told that autism is a sad mental disorder. Sometimes, I just have to smile back and go on to better things. At times, I am the person some people prefer to avoid. What choice do I have? I can be me and let them back more away, or I can pretend--which ends with me just being frustrated and exhausted. I will continue to chip away at people, in my own way, as I am here to stay. I naively thought explaining myself would be easier with a diagnosis, but I am dumb struck at times by the ignorance of others.

E: Are there organizations in your country promoting autism awareness? If so, what is the message offered?

Alyson: I guess I am the first Asperger's Web Site for and by Aspies in NZ. My web site is used as a link here in NZ and there are probably various other independent sites and blogs with messages similar to mine. The larger organizations, I feel, are years behind organizations such as the National Autistic Society in the UK. That organization actually employs many people on the autism spectrum now. I so agree with them in using the slogan "Nothing about us, without us!"

E: Just for fun, what is something about New Zealand you think other people would be interested in knowing?

Alyson: The part I love about New Zealand is being able to have the space to create your own world within this world. There truly are some amazing places here, which I feel I can best describe via the name and description of some of my art work:

Refractive Illusion: The world around us can have a huge effect on how we feel and think. Just being in the presence of a large mountain range--so desolate and cold at one moment--but as the sky lights up and a celestial ray of light appears, deep sadness turns to hope. The experience can take a few moments, not really knowing how or what has happened, but then one finds the *self* full of excitement and exhilaration.

E: Thank you Alyson for sharing such an up close and personal interview.

To try something different, I allowed Alyson to interview me as well and my answers are below:

Alyson: How did you first come to learn about Autism Spectrum Disorders? 

E: I've been in touch with autism for quite some time. As a teenager, I worked as a nanny for one-year old twin boys who are on the autism spectrum. They happened to be diagnosed about a year after I began taking care of them. I was very close to both boys and felt I understood them well. 

In college, I began having a lot of struggles. I spent much more time on homework than the average person and was often stressed out about not understanding the complex and convoluted information in my classes (my major was Speech & Hearing Sciences). Tests were a nightmare, as I never felt I had a enough time to process the questions so that I could produce intelligent answers. I finally went in to see the school psychologist in hopes of being approved for extended testing time. I ended up not only receiving extended testing time, but also receiving a referral to a psychologist who specializes in diagnosing Asperger’s. 

I never followed through with the referral, as I was happy to just have extended testing time. Besides, the word "Asperger’s" is weird. Years later, after my youngest son (of two) was diagnosed as being on the spectrum, I went in and received my diagnosis as well. 

Alyson: Have you been diagnosed with an Autism Spectrum Disorder? If yes, how and where? 

E: I was diagnosed in Portland, Oregon by a neuropsychologist. It took about two months between testing and appointments. 

Alyson: Do you feel that people with Asperger’s Syndrome are unfairly treated? 

E: All people are unfairly treated at times. Unfortunately, people with disabilities are often even more likely to be mistreated. Have I been unfairly treated? Yes. So far, I think it's due to my direct personality. It rubs some people the wrong way. On the other hand, I've been mistreated several times in direct relation to my deafness. Some people have a hard time with what is strikingly different. Sadly, I've faced the most discrimination from the very people who are supposed to be either working with me or helping me--instructors, co-workers, and employers. 

Alyson: Do you think that Asperger’s Syndrome should be classified as a mental disorder, learning disability, or what? 

E: Autism Spectrum Disorders are neurologically based. 

Alyson: What services are available for people with Asperger’s where you live? 

E: There are on line, as well as in-person, support groups. Two examples are the Portland Asperger's Network and the Portland Autistic Self Advocacy Network. 

There is the Oregon Vocational Rehabilitation, though they are unfortunately no longer accepting new clients. 

For infants and school-aged children there are educational service district's offering services in each county. The quality of services varies from county to county. 

As for diagnosis, there are a few competent therapists who are well-versed in diagnosing Autism Spectrum Disorders. Also, two of the leading hospitals here in Oregon have diagnostic teams and centers set up for ASD diagnosis, however, the wait lists are long. 

There are plenty of naturopathic doctors here for parents who prefer that route. 

There is an Autism Society of Oregon. It is strongly cure-focused. 

There are two schools that solely cater to young children on the spectrum. 

There is a public lending center, within a hospital, that stocks autism-related publications and media. 

Plus there are a few summer camps and programs for children on the spectrum. 

Services for autistic adults, however, are greatly lacking. 

Alyson: What support and help are you currently receiving? 

E: I am receiving services from Oregon Vocational Rehabilitation for specialized job training in my field. 

Alyson: What do you find most positive about people with Asperger’s Syndrome? 

E: Our ability to think outside of the box! 

Alyson: What do you see as the negative effects of Asperger’s Syndrome? 

E: There should be no negative effects when a person on the spectrum is having all of his or her needs met (appropriate and meaningful education, accommodations, integration and acceptance, opportunity, and legal protection). Co-morbid conditions to Asperger’s are a separate entity. 

Alyson: Do you feel you can discuss Asperger’s with friends and family? 

E: To an extent. My closest relatives and friends are able to understand me better now that they know. I have had some close candid discussions with the nearest and dearest. Fortunately, I have not experienced any disbelief or anything like that, as some of my idiosyncrasies are quite pronounced. I feel that disclosing my Asperger’s has only put things into perspective. I have not, however, told more distant family members. 

I am currently editing a memoir. I would rather my *leftover* family members and friends find out through reading my memoir. There would be less to explain, as the more distant relatives and friends of mine are acquainted with my outside "mask" and not my real self. 

Alyson: Are any of your family members or friends also on the Autistic Spectrum? 

E: I strongly suspect that one of my parents is on the spectrum. I am being vague out of respect for privacy. My youngest son, of two, is autistic. I also have a cousin in France who is autistic. 

My nephew, from my husband's side is Asperger’s autistic. Most of the family strongly suspects one of my husband's brothers is Asperger’s autistic, plus an uncle who has passed. 

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