I am Writing a Book- "I am not a puzzle piece"

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The full title is "I am Not a Puzzle Piece: Autistic People are speaking for themselves, and its time to listen"
I am writing this, explaining why its so hard living in a world that stigmatizes autism
This is the chapter list: (I am incorporating personal experiences in all the chapters)
Intro
First Part: Autism
What is Autism?
SPD
Stimming
Special Interests
Puberty
Gender Difference in ASD
Labels (like why functioning labels don't really work)

Second Part: Stigma
Myths and Truths about Autism
current "cures" that scare me (Like the bleach one or chelation)
ABA controversy
Why I feel misrepresented by the puzzle piece symbol
The truth about Autism Speaks

Third Part: How you can help
Who can I support?
What to say/ not to say to an autistic person
Awareness v. acceptance
What parents need to know

I have autism, and I've written many books (and published many) before, so this shouldn't be too terribly hard.

Feedback??

Sounds like something that is needed.

Let me know when it'll be released so that I might be able to pre-order it. Might be useful to have around the house if you or a family member has autism. I'd keep it in the coffee table should conversations go towards that. Easier than me explaining. Plus, I don't know all the myths about autism.

To help you a bit with the gender differences part, you could probably mention that it is diagnosed more often in boys than girls even now, similar to ADHD. Possibly due to society's own little expectations in regards to women's roles or something. IDK.

Maybe you could dedicate another chapter on school, work and stress?

How about a chapter about how you are not in an ice fortress?

(For those who don't know about it-this is an idea that all autistic people have a non-autistic version of themselves inside them, trapped in the "ice fortress" of autism. The curebies hope there is a way to tease out this more desirable version of the autistic person they know, and thus "solve" autism.)

I am going to explain (repeatedly- I take issue with this too) the "ice fortress" theory. Nope, taking my autism won't let me be my true me- take away my autism, take away me.

That's how I see myself; trapped by a personality that is just not really me at all (and it isn't).

"Curebie"?????

Curebies is just a word used to describe those who who want to "cure" autism by whatever means possible.

Go for it OP, I like what I see there. Drawing on personal experiences is always a great way to make a book more accessible. I always draw on personal experiences for my blog. People need to be educated about all the aspects, and not least about how unacceptable the methods employed by Autism Speaks are to the greater majority of folk on the spectrum.

Yes, it is true that we can speak for ourselves, but I just hope you always keep in mind the fact that, just like every other possible category of person we can think of, autistics are not some amorphous mass of people we can just lump together and stereotype as being of one mind and opinion. I'm not saying here that you will do this, or are doing this, but as I understand it there are many on the internet who think they can take it upon themselves to speak for all of us, and I don't just have Autism Speaks in mind when I say this.

People who claim to be autistic (and I say this because I don't really know if they are, having never even met them) via their "blogs" like to criticise and condemn Autism Speaks both for what they do and their views, but they are not the embodiment of evil on Earth today (that "honour" goes to I.S.I.S.), and their shrill screaming often sounds to me like they just want notoreity and attention. I've visited the A.S. site many times, and they are not as bad as many seem to think. Yes, I'll probably get into a lot of trouble here for having said that, but many of the claims that are made about them by so-called autistics and Aspies (ex. that they want to euthanise autistics, that they fund genetic research in order to eliminate autistics from the gene pool, et cetera) are just laughably absurd.

My advice for your book? Don't listen to the histrionics of hysterical "Aspies" on their blogs (or whatever), and go straight to the source. If you will include a section on Autism Speaks or any other such charity, then actually visit their site before you say anything about them. Don't fall for the propaganda. Stay away from people who compare them to the Nazi Party, they are delusional fools at best.

Yes, I know that in the past I also expressed opposition to Autism Speaks, and probably said a couple of nasty things about them too, but that was before I actually did my research, and had allowed the opinions of others both here and elsewhere to colour my views. It's really easy to jump on the bandwagon when people are really having a go at someone or something about which one knows very little. "Aspies" may sometimes claim they don't suffer from the 'mob mentality' of N.T.'s, but that's just another one of those myths we need to bust, because some of them actually do get carried away by it.

I have to admit, I just do not understand this attitude at all. I'm not saying that it's wrong, just that I can't relate to it. To me it's like a blind man saying, "If you give me the ability to see I will become a completely different person, and I just don't want that because my handicap is an integral part of who I am", even though the restoration of his sight would actually expand his horizons, his opportunities to be who he was, and to do whatever he wanted to do with his life.

There is so much more to us than just this. If autism is all that you associate with who you are, then all I can say is that such an attitude is remarkably limiting.

Look, let's face it - autism sucks. It just does. A lot of that "suckiness" has to do with the way we are treated by others, yes I will admit that, but so much of it is integral to the condition itself. For example, panic attacks, sensory sensitivities, and an inability to understand non-literal language (or at least struggle with it). Chronic unemployment is one that I have had to put up with, because I just could not, no matter how hard I tried, keep any job for any appreciable length of time. It was only later, when it was too late, that I found out why so many people thought I was so odious and weird - Asperger's Syndrome.

Well, stuff that! I want a CURE for this rotten handicap, and I really don't care if I attract the label "curebie" for it. It's just a word, one that I didn't even know the meaning of until recently anyway.

This explains precisely why we shouldn't at all consider embracing the disease model. It is too much of a way of saying that as an autistic you're being handicapped by autism (a disease), that we must accept our fate and probably forget about having an active role within society. I find this view very disabling. You have the right on your own opinion of course but I'm still going to make an effort to refute it.

Being autistic doesn't suck. Rather, it deserves acceptance and appreciation. It deserves to be valued despite our handicaps. Moreover, it needs to be elevated to the point where acceptance is being replaced by full participation in society. We're not going away and attempts at treating us as mentally ill are simply humiliating and a disgrace. As a person, I am not responsible for the lack of acceptance regarding my shortcomings. I fall short on the demands that society puts on me. I refuse to take responsibility for that because it is clear why I fall short. It really should not matter. I should still be able to participate fully. It's simply a human right. It's moral, it's ethical, it's even economical. We shouldn't have to put up with chronic unemployment. We should make a point of striving towards an inclusive society, one that has made the necessary adaptations to us. Why not? We are with many; we are legion!

For those of us who lack the control of their bodies but who are able to type to express their views on this matter pretty much express the same opinion. They need more care since they are unable to take care of themselves but still I read from them that they, too, do not wish their so-called autism to be taken away from. They often refer themselves as autistic, not as someone who has the disease called autism. Being autistic is and integral part of me. All that I have experienced is, perhaps unfortunately when it comes to the bad, because I am autistic. Still, I am happy with myself. Just like those who have less control. They have accepted and embraced their own self. They don't think of themselves as being ill.

Besides that, what exactly would you gain from becoming NT? Would you achieve more success in your life? It's not a guarantee that you would. What exactly would improve? Your ability to communicate? How truly different would it become? Would they like you better because you could have fewer miscommunications? You would still have miscommunications nonetheless. You would still suffer from loneliness. One's self isn't as easily understood by someone else. There is this gap of not understanding each other completely that will always be there. You probably wouldn't even notice that the majority of friendships you have, as NT, would still be quite superficial. Maybe you wouldn't realize it as much but that doesn't mean it wouldn't be a problem. You could still be chronically unemployed. Becoming NT or simply being NT doesn't instantaneously solve your problems. It isn't even guaranteed that they would lessen. It's not a solution. It's actually a problem.

Because acceptance of one's self and acceptance by society paired with full participation is a much better alternative. It doesn't have to deal with having to adapt to a society that has no patience for autistics. It doesn't suffer from self-reproach, ruefulness and guilt feelings. It doesn't give any room for those who want to help you by ridding yourself of "autism". It stops those who point the finger at you. It will finally give you the chance to discover more of yourself and focus less on being autistic, because it won't matter as much any more.




It's true that IS is probably the embodiment of evil while Autism Speaks likely isn't evil per se. But it doesn't speak for us at all. You have done your research on them. Then I hope you have also encountered this letter by John Elder Robison. He resigned from the board of Autism Speaks. Autism Speaks may be doing very good things but they still hold the view that "autism" is a problem and needs to be cured or even done away with. Why don't we take note of Mr Robison's decision to leave Autism Speaks and his complains regarding the attitude within the organization towards autistics? Would he qualify as "the source"? He does to me. His voice isn't the only one. My voice is added to those who oppose Autism Speaks. Gravityfalls222's voice is there, too. We may not speak for everyone but we do speak for many and we're confident that this is how the majority of autistics feel about Autism Speaks. Why should we think they're OK while they feel sorry for us?

Why do you feel sorry for yourself? Why do you seek to cure yourself? Why do you let Autism Speaks do the talking for you? Why don't we take it upon ourselves to counter their message and seek to replace it with the positive message of neurodiversity? Why do you focus on yourself while you could achieve so much more in collaboration with others who are in a similar position? I hope to be able to do this soon myself and I hope to receive your support as well as anyone else's who have the same concerns.

There seems to be some controversy and confusion about my book (and there always is with autism-related topics)
Just to clear things up slightly, here is some info about me and my values.

-Yes, I am actually autistic, diagnosed, and have problems with everyday life. My speech is limited (I also have a severe speech impediment, which is part of the reason I enjoy writing), and I cannot drive.While my social skills are adequate, I have extreme SPD and will likely be seen wearing headphones and flapping my hands. I have to see a neurologist three times a week.

-I have researched autism for about 7 years now- I have looked at the pros and cons of everyone's opinion- I am very informed, and I am never set out to write anything I have'nt researched the crap out of. Yes, I have written books before, one of them being published. This is my second year on this book.

-I do not think autism is all of who I am, or that it makes me better than everyone else.

-I cover many things in my book, and the stigma is only a part of it. I explain from an autistic person's veiwpoint of SPD, stimming, social challenges, etc. I give advice on how to talk to an autistic person, and some things to generally avoid saying (as to not make us uncomfortable)

-I do NOT believe I speak for all autistic individuals, but just like any other thing, it is generalized. I make many many MANY notes in my book that they info I give may not apply to all autistic individuals, but DO a fair percentage of us- I do not speak for the vaccine believers, or people who are not actually autistic and just say so for the politics. I have interveiwed close friends and relatives who are autistic,parents of autistic children, and many school staff who deal with us. I do look on YouTube, blogs, and wrongplanet, to here what other autistic people have to say- I know how to weed out extremist opinions, and try my best to use good judgement.

-Thank you for the advice on adding personal expirences- I have added many and included my illustations (I'm actually pretty (awkwardly) funny if you get to know me

-This is my point about autism being part of your identity- It shapes the whole way you see the world, therefore, I guess you could say, autism and your personality coexist, and one cannot exist without the other- this isn't anything bad or wrong, but thought processes in autistic people are very different than neurotypical people. In NO way am I implying that autism is all of who we are (thins would be impossible, considering that every autistic person is different)- I like things other than researching autism, such as Joseph and the Amazing Technicolor, Dr.Jonas Salk, and my secret passion, Dr.Phil. (: (don't laugh)

- On awareness v. acceptance- I think both are needed. We need good awareness goin' on that has actual information about what is feels like and means to be autistic, not just listing birth rates. Acceptance not in the sense that autism is not a disorder (because it is), but in the sense that we don't feel obligated to hide stimming or unusual voice tone.

-I do not hate A$, but I think they could be doing a whole lot better...I think they do need to re-phrase the way they talk about us, listen to our concerns, hire more autistic people, and change the way they spend their money. My best friend Sean (who is an aspie) wants a cure.(but does not like this organization because of their fear-mongering tactics) I disagree (with the cure part), but I'm still cool with his opinion. I have both the good and bad sides of things in my book- such as that the chapter on ABA is a two parter- I will explain the orgin, good sides, and bad sides.

Look guys, I know all of you are concerned about the contents of this book. That's actually great! Autistic people need to be concerned about how we are being represented. I take all of your questions, comments and suggestions very seriously, and I encourage you to keep up the disscussions!
I encourage everyone to be respectful of other's opinions, and feel free to express their own.

I will try to post some pages on here once I've edited some more to get more feedback.


Everyone stay ausome!!

Haha, sorry everyone for the spelling errors in my last post- its late and I forgot to spellcheck. (arhhgg)


Have a good night!! !! !!

(as a writer, this is my greatest weakness )

Do you work with, or look after, others who lack the control of their bodies? I'm just curious, because you come across here as being so certain about this.



So many questions. What would I gain? Well... I would become a fully-functional taxpayer with a career for starters. I would no longer be afraid of so many things (like water, heights, travel, my own shadow), I would no longer misunderstand people, and they would no longer misunderstand me. I would have friends, maybe even a girlfriend, and I would no longer be annoyed by certain lights and sounds. Others wouldn't irritate me so much. Would I achieve more success in life? Hell, yes! I know that nothing is guaranteed in life, but I do know that my chances would be vastly improved if I were not the way I am now. I don't suffer from loneliness anymore, but that's only because I have become so used to it. True, becoming N.T. wouldn't instantaneously solve my problems, but it would be a good place to start, it would mean that I would have a chance in life to actually live a life, rather than just doing my best to cope with a bad situation.



Yes, in an ideal world where discrimination didn't occur, I might be more inclined to agree with what you have written here. Human nature being what it is though, that's not going to happen.



Yes, I know about the John Robison resignation. The view held by the management of Autism Speaks that autism needs to be "done away with" is one that I now happen to share. I don't feel sorry for myself, although I do quite often feel envious towards those who seem to have their life in order. I don't allow Autism Speaks to speak for me, so I don't know where you got that idea from. However, having said that, I don't allow others to speak for me either, and I resent it when so many who claim to have autism or A.S. come forward in their strident manner and say things like, "Autistics don't like to say they have autism, but prefer to say they are autistic!" Really? These self-styled representatives of the 'autism community' don't have a clue, they don't speak for me.

As for the concept of neurodiversity - is this an idea we should extend to any and everyone who has, for example, widely recognised mental illnesses like schizophrenia? Do we now start to encourage those who have trouble coping with the way they are to forego treatments that may actually help them because of some ideological commitment to 'diversity'? There are many of us who simply do not accept this idea, and I am one of them. I used to, but I don't anymore, because I now understand that so many of the problems I had when I was young were due solely to this handicap, one that I never asked for. Autism isn't who I am, it's just a crappy add-on that I would be better off without.

as an ex-physician, i have to warn you that a neurologist who sees you three times a week over the long term is likely to be taking advantage of you unless it's to give some sort of injection you can't learn to give yourself.

its a combination of disability and personality.you have all heard the cliche that disabled people are different on the outside but the same on the inside.
this is not true in autism,we are fundamentaly different spiritualy and in our personalities.

its finding the right balance with the individual its not all black and white disability vs. personality