Many people with ASD rightfully complain about not being heard. Worldwide there are a vast amount of autism platforms, mostly run by autism parents and professionals. Although those are unmissable to autism advocacy, so are the ones on the spectrum – people with ASD.
Therefore, Autimates offers a place for them to say what they want, what they think, and how they feel about many aspects of life with autism.
Autimate’s first interview is with Brian Bird, from the UK.
Brian is 55 and diagnosed as Asperger at 50. Since then, he has been (self)advocating through lectures and on his Facebook page: https://www.facebook.com/Aspieblue.co.uk?fref=ts
Brian is also the father of two autistic boys on different sides of the spectrum. He is separated and mostly raises his children alone. Let’s hear what this amazing person has to say.
Autimates: Do you prefer to be called ‘autistic’ or ‘person with autism.’?
Brian: This is a great question, one which I see posted a lot and it really can offend so many people including those on the spectrum.
For myself and even my sons, I don’t mind which one, I think people do get bogged down in the details of words when it is the intention that is far more important. All I can say is that I am indeed autistic, no doubt about that one. Therefore, it only follows that I am also a person with autism as it has already been discovered that I am autistic (but certainly not diseased or defective)!
So from a personal point of view I feel it is a question that can just revolve around in circles. See, it doesn’t matter as for myself and indeed my sons I accept and embrace autism in full. There is nothing derogatory about the word autism so how the individual refers to me is fine, so long as it is respectful and true.
Finally, it is the intention, and the direction that we are going that is of far greater interest and concern. Besides if we get too offended by every term there is always the danger we might just put people off from asking questions, people may back away if we bite their heads off so to speak.
Autimates: What made you search for a diagnosis? And how did it influence your life?
Brian: Another great question and one that really touches on the very essence of my life and challenges that I have faced. I could probably write a book on this one, but will try to keep it short. I had led a very traumatic life, full of confusion, dark despair and a feeling of being different but never knowing why this was so. From an early age, I was considered to be backward, retarded, mental, and unteachable. My very own parents and father, in particular, rejected me, and it wasn’t long after that that society through the key away, and I was lost in the system of things.
In the 60’s there was simply no understanding of autism and the consensus was to beat it out of the child. I was beaten for not making eye contact, for not giving the right response, for not being able to conform to some twisted version of normal.
I escaped by becoming invisible, by withdrawing into my own world and avoiding people whom I had learned to fear and for good reason. Being bullied on a daily basis was very traumatic. It seemed that I would never escape from what can only be described as a nightmare life; an existence without a healthy quality of life at all.
Until seven years ago, I knew nothing about autism, even more bizarre when one considers that my father was a Psychiatrist and my mother a special needs teacher. Then around six years ago I attended a course for parents of newly diagnosed autistic children. During that three month course I began to see my whole life experience before me. It was a spiritual moment of epic proportions as I transformed into a new being, an autistic one.
I feel like the Phoenix bird that rose from the ashes of despair. I suddenly stood up one day and said: ‘I am autistic’, people laughed and just looked on! From that day on I continued to soar higher and higher, and the perspective, the view of my life altered forever.
So it was that my son’s diagnosis at the age of 4 set me free from a cage that I had no means of escaping from. Even thought that cage door was always flung wide open I would be unable to fly, as society had clipped my wings.
Each day I looked after my son, I started to look back on my life and put the pieces back together. In short I performed a miracle, but the transformation was painful, and I suffered many days lost in depression and isolation. Isolation in the sense that I no longer knew who or what I was, and that my childhood had been lost to some mysterious blue force.
I finally knew I was autistic and yet cruelly I was denied my diagnosis for many years. No one believed me, and I was even told that I was too intelligent to be autistic! Or that I would clog up the system. Once again I was written off by society and left to fester. However, they misjudged my resolve and determination; I would get my diagnosis, even if it meant going on hunger strike. I was willing to die for the right to be diagnosed and to find my true self. I wanted what was mine, for the simple reason that I wanted to show my son I was the same and that I would lead from the front and without any fear.
I wrote a huge letter, over a 100 pages and took it to the referral center. After a 13 hour day, I received my diagnosis of Aspergers’ syndrome at the age of 50. The team that diagnosed me were wonderful. They were moved by my traumatic life experiences and that I told them it had taken me 50 years to get to this room, to get to this point in time.
I strongly believe that the diagnosis transformed my life for the better. I would have been lost for years and would have deteriorated if I never knew what had had such a profound impact on my life.
As each day has passed over the last five years, I have been able to tackle the very nature of my condition. It is unusual and amazing in that I do this without any help from professionals. I have had no support since diagnosis, so in a way had very little choice.
The self-awareness derived from my diagnosis means that I can manage crippling anxiety; anxiety that saw me almost housebound and unable to make any friends, or even meet for coffee. Now I am able to do more in 5 years than I did in 50 years, sounds incredible I know, but it is true.
Autimates: What are the most difficulties you find as an autistic person in a neurotypically thinking world?
Brian: There are so many difficulties I face in the NT world. Even worse is that my boys have to face these on a daily basis. In some ways, I even create difficulties by disclosing my diagnosis in many situations.
I do this to raise autism awareness and in most cases people are truly interested and kind towards me. However in other situations, society takes a harsh view with regards to any form of difference.
I think that autistic people are given a lower status in society. Nothing is expected of them as people still think of autism as depicted in the film Rain Man. People are often suspicious that I can be a father; they cannot understand that Autism is a huge spectrum and that there are many fine autistic parents out there.
If I choose to disclose my diagnosis of autism when looking for work, then I would have very little chance of succeeding. Sadly the majority of autistic people are out of work. There is still little help for adults with autism.
Autimates: Name an autism myth you would like to see erased.
Brian: Autistic People have little or no empathyThere are so many autism myths to choose from. However the one that really does cause so much prejudice and confusion is that ‘Autistic people have little or no empathy’. These myths really are cruel and so untrue. Inadvertently it is actually spread by professionals who believe this to be the case. This is why we get some journalists saying that Socio paths are the same as us, because of no empathy.The truth could not be different, autistic people are often extremely sensitive, full of feelings, bursting with empathy. The confusion arises in that some autistic people just find it really hard to convey empathy and on the spur of the moment. If one asks autistic parents and autistics themselves then straight away they will say that if anything they have even more empathy than the NT does.A good example would be a very shy NT person. Now society would never condemn that person for having no empathy? no of course not, just that they are shy and cannot convey it. So the act of saying that autistic people have little or no empathy is grossly offensive, incorrect and in itself is showing that it is actually society that lacks empathy by suggesting this. To get diagnosed we have to encounter this question and it should be changed without delay. Autistic people are human, they have feelings, emotions, and needs and should never be dehumanized.
Autimates: What do you think society can do to help you improve your life (and that of your children)?
Brian: Autism should never be viewed as something nasty or untoward. I would hope that some day society would see autistic people as a new way of seeing things differently and that they can contribute to life in ways that NTs could not even imagine. There is a huge amount of talent out there, and much of it comes from those on the spectrum. We need change, and yet ironically it is not the NT who can make these changes. I believe it is autistic people themselves who will eventually challenge and overthrow the dated perceptions that society has held and still holds. If you truly want to learn about autism then for sure expert advice is good, but without the autistic perspective thrown in all is lost.
Autimates: How do you think you or other ASD people can help a neurotypical society?
Brian: I spread awareness and hope for those parents. I was invited to do a talk at this years London Autism Show; it was incredible that I could face around 100 people and stand up and give a talk? I was the boy who was invisible and to come into focus like this is just fantastic.
I also took part in the research side of a BBC Horizon documentary, presented by Uta Frith, an autism pioneer and world expert. Just over a year ago I gave several hours of interviews and was filmed for 13 hours. I even appeared on the documentary for a brief few seconds. I hate that as it gave me a lot of anxiety, but I helped and met the amazing Uta Frith, who was lovely and so warm.
Presently I am writing my autobiography, the story of escaping from autism; the story of how I grew into autism, rather than out of it. I may also write another book, using the many photos I have of my sons and I. I have chronicled my 11-year-olds son’s life since birth. I have transformed him into a child that is doing his best at mainstream secondary school. He started off as severely autistic and now is HFA (High Functioning Autism) in many ways.
I also learn a lot from running my Facebook community page, named Aspergers – A lighter shade of blue. This page is a community of like-minded autistics, parents, and professionals who all pool their unique, valuable experiences to help and inspire others.
In a way, I created my own support system, and it has worked great. There are now over 4,000-page likes there, and they are just awesome.
So autism didn’t destroy my life, society tried to do that and failed. However, autism did empower me to use any bitterness, anger or despair into positive tools that now inspire those around me. Autism became a super power. For this reason – no matter how many challenges and heartache I face -, I always feel blessed and content in never wanting me or my sons to be cured of our life force.
I say to people that unconditional love, acceptance and faith are all you need to live with autism.
Don’t try to grow out of it, but rather embrace the differences and use them to your advantage.
Grow into autism, and life will become easier, just it can take a lot of time.
Autimates: Is there anything you would like to tell people, regarding autism?
Brian: For myself I can disclose my diagnosis and feel completely happy and at ease with that. I would like all autistic people should be able to feel like that in time. We should not allow society to see us as diseased, disordered, dysfunctional.
Perhaps my greatest difficulty in dealing with the NT world is how they refuse to allow or accept any difference. It is indeed ironic that autistic people are wrongly labeled as rigid and unable to change, and yet the NT world often refuses to make any allowances for our differences. We are often feared, rejected and dismissed by all.
Over the past few years of being an autism advocate, I am always amazed how certain things just never seem to change. I receive letters from parents everyday concerned how their child is being bullied at school, or how they are not being supported in any way. It is truly shocking, and I believe that the majority of schools are well off the target. The belief that we can knock autism out of the child and make them NT is such a waste of time and just causes so much anxiety and trauma for autistic kids and parents alike.
Thank you, Autimates, for giving me the honor of writing this and to allow me to help in a small way.
Note: The author doesn’t refer to ASD as an Autism Spectrum Disorder once her perspective is that Autism isn’t a disorder, but a difference. In that way, ASD, on this site, means Autism Spectrum Difference. Interview with Brian Bird – UK