I recommend that anyone interested in the realities facing severely autistic persons avoid mainstream media organizations and most internet blog sites. These sources,eg. CNN, CBC, The New Yorker, Autism Hub sites, tend to focus on the realities and agendas, of an alleged autism rights movement, consisting of a few high profile high functioning persons and persons with Aspergers. One internet exception worth visiting is a blog called Mandy's Blog at mencap.org.uk.
The alleged autistic rights movement actually suppresses the rights of the more severely autistic persons, badly in need of treatment, cure and assistance at all stages of life, by asserting that autism is simply a natural variation, that Neurotypicals should not seek to cure autistic persons, even their own autistic children, even when those children are actually much more severely autistic than the media posing "autistic rights" leaders.
The autism rights leaders like to publicly identify autism with very intelligent historical figures and frown upon the very mention of severely autistic persons; a reality they deny. Even discussion of autism, a spectrum of disorders, in terms of degrees of severity is attacked. After all it is difficult to claim the right to speak on behalf of a large group of people if in fact you faced very different challenges and they have never asked you to speak on their behalf. Better to pretend that the differences do not exist.
The introduction to Mandy's Blog makes it clear that this is not the usual joy of autism stuff where the mere mention of the severely autistic is frowned upon:
Charlotte is my daughter. She is 12 years old, blonde and pretty (although I am biased of course) and has severe autism.
When I read Mandy's description of her severely autistic 12 year old daughter I am struck by the similarities with my severely autistic 12 year old son, her echolalia, her bubbly personality, and her entertainement choices are all strikingly similar to my son Conor. Mandy speaks in a straight forward, realistic manner about the challenges facing her and her daughter.
I encourage everyone interested in learning about the challenges facing those with severe autism and their family members to visit Mandy's blog.
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Thank you for your post. My eleven year old son is on the severe side of the spectrum. I echo all your points made.
ReplyDeletehttp://www.causecast.org/member/tanners-dad
I will admit I sent you the link to her blog now. Mandy is a very good and supportive online friend of mine. I have never met her as she lives too far away, but she is the most supportive and caring friend and mother I know. I was worried about you posting her link up not because I want her life and her daughter's life to be shut away and ignored, I have known and supported Mandy in all her decisions for several years now, but because she is such a good friend I did not want anyone judging her.
ReplyDeleteIt was Mandy who offered me advice and support when my son was diagnosed. It is her who continues to offer support and help. She is a fantastic person and she deserves nothing but praise.
I am very glad to see there is an attempt of some in the blogosphere to show a more balanced picture of autism.
ReplyDeleteThis sort of "heartwarming human interest story" :
http://highschoolsports.oregonlive.com/news/article/1221290313/alan-kwans-joyful-role-in-west-albany-football-breaks-the-barriers-of-autism/
is typical of what you usually see.It helps create the myth in the minds of the uninformed masses,that autism,is a mild condition,and those that have it are all fully capable of working,and living on their own.
The talk of a "bubbly personality" is interesting.I have noticed that those on the "more severe end of the spectrum",ranging from PDD-NOS to classic autism,always have more empathy,and sociability,than those with Asperger's,or high functioning autism.
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ReplyDeleteMandy's blog is on the internet, it is in the public domain.
As the father of a severely autistic 12 year old boy I understand some of what she has to deal with including the attempt by many to pretend that there is no such thing as severe autism. I commend Mandy and any other parent who deals openly and honestly with autism disorders in their family, particularly severe autism.
Our children do not appear in The New Yorker magazine or on CBC. They do not make feel good news stories and the dilettante journalists of today rarely want to address the real challenges of the severely autistic (there are some exceptions ).
It is important for each parent with a severely autistic child to speak up and tell the world the truth.
I know, that's what she told me about the public domain when I told her you'd put her blog up. I just didn't think of that before, but I thought you'd like to read her blog.
ReplyDeleteHi, I'm Bullet's friend, and the Mandy from 'Mandy's blog'. Bullet, don't worry, Mencap is a huge charity in the UK so I was fully prepared for a large number of people to read what I have written.
ReplyDeleteI wanted to show the honest reality of our life and not the horror stories or schmaltz that the press put forward so often.
My hope is that my blog will help someone to feel that they are not alone. I didn't do it for sympathy, Ill be happy if people who have a child similar to Charlotte find my writing interesting and can relate to it. I have no agenda, I don't wish to influence anyone or force my opinions on anyone else, I simply want people to hear our story and understand more about autism from a parent's point of view.
Mandy, thank you for your blog and for commenting here.
ReplyDelete