Please come out!! !

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Michael Buckholtz:
“A couple of recent essays on the internet came to my attention over the weekend. A CNN manager and a record producer for MC Hammer admitted that they both have Asperger's Syndrome. They tell of their struggles that they had when they were children which were similar to mine own. It was hard to fit in and understand what small talk was and other social cues.
After he was diagnosed in his early 30s, Hammer, who is now 42, his biggest issue is convincing others that he does in fact have the disorder. He had to explain how he was able to learn how to react to other peoples' emotions.”


As for me (Paolo), I am 75 and I am in the autistic spectrum. In September I have written and published a book with a resume of my sisyphean life, titled In the Bubble, my Life with Autism. I live alone with a little dog. Every approach to other people (for practical reasons, call a plumber e.g.) is for me an ordeal, I have no friend or relatives whom I can ask for any kind of help.

The book, which has sold for now less than a thousands copies in three months, hasn’t changed a iota of my complete insularity. Those few “friends” I had have dropped me (which I don’t regret much) and there is no one whom I could successfully explain what the autism spectrum really is and why I am autistic, being countered at best with psychoanalytical babble, which in continental Europe has still its hold.

In occasion of Autism day on Wednesday, I would like to launch an appeal for everyone being affected by a condition in the autism spectrum and being over 40 (better if they have reached some good professional status) to come out publicly. They will do a service to honesty in social life: if they stay silent, they, and everyone one else of us, will continue to be treated as “normal” people, and will be forced to be untruthful in all social relations. It is a fight for honesty and not a philanthropic effort. So please come out.

A piece written by me should appear on Wednesday about autism and autism day on the second largest newspaper of my country. I will reproduce it here.

CNN Manager's Essay, My Life as an Earthboud Alien: http://www.cnn.com/2008/HEALTH/conditio ... ism.essay/

Michael Buckholtz's Essay, Autism is My Universe: http://www.macon.tv/younews/17108441.html

wow Paolo, congrats! I'd love to write a book and sell hundreds of copies ! !! !! !!

Regarding "coming out" - I wouldn't do it in my job or in my tiny community, of course. That'd be suicide. When I'm retired, I won't hide it from anyone, and I'll say it if I want to.

I understand there are practical serious reasons not to go public in many cases. I can do it because I am retired. I also pay a price, in anything in terms of loneliness. But anyone who can go public should do it.

Well we should try to stop lying in general.

Paolo: congrats for your book!

OMG from the MC hammer producer article, this fits me, and I guess a lot of others people here, a lot!! !

One of the problems that arise when you discover late in life your autism, is that this revelation is a key or frame to reinterpret all your life, your failures, your phony friendships, your mistaken choices. You cannot put up the same comedies again, because, while in one way or another you were forced into believing them yourself, now the spell is broken and you can’t any more treat your “friends” as if they were real friends, you cannot attach value to the things you have done for years. It’s like discovering that the companion of all your life has been unfaithful to you from the beginning. It’s devastating, you have to start from scratch (sometimes with diminished forces).

About “coming out”: there is some analogy here with the strategy of gay pride. What feeling of liberation must be to mix in a crowd of people like you, who have the guts to “come out”. I know that many of them cannot “come out”, because the may lose jobs, power, friends, strain their families, they may have to cope with the general aversion to “difference” be it stranger, freak. religious minority, and even utterly ugly.

Congratulations on publishing your book Paolo. I am well into the age range you are talking to. Some of what I like about my job is what concerns me about letting people know after I get an official diagnosis. As I get more used to this, and my initial anger and depression dissipate more, I may take your advice. For now concerns about my career, and a reluctance to even tell my family are keeping me from doing it. Actually, the only person I have told that I know on a personal basis is a tattoo artist I met 13 years ago. I counted on her either knowing what I meant, or being smart enough to not be stupid about it. And she didn't disappoint me.

By the way Paolo, I disagree about not attaching value to the things you have done for years. You were obviously good enough to make a career out of teaching and retire from it. I'm certain that your familiarity with literature helped with writing the book.

Paolo -

I'm writing a "coming out" book about Asperger's Syndrome, too, but I have to wait until I have an official diagnosis to have it published. The waiting list for being evaluated is ten months.

I'm a little worried about what people will think. I have already had some of my family review the book, and they are mostly supportive. I don't know how the book will affect my job, but I'm not too concerned. I don't have a spouse or children so I'm not worried about putting my family in financial jeopardy.

I, too, think that it is important to help others understand AS and to be honest about it.

Z

I want to add that there will always be a large portion of population which will never "come out" or be taken in a census. They are mature and old people, even some young people, who are lost forever to society, communication, integration. They are people diagnosed as "mad" or not diagnosed at all but put apart in asylums, or living at the far edge of society, hiding themselves in metro stations and abandoned houses, bums, alcoholics. Most of them are very likely autistic, without no one to help them, appearing only in vital statistics and registers.
Going around with the little dog I often meet poor old ladies who after asking to cuddle a little the dog tell their story of their own dog died or lost and of their absolute loneliness. These people will never "come out", don’t even know why they got lost.

About a "coming out", it reminds me something I read last week. We are like the gay community in the 70s it seems...

Paolo,

I am pleased that the acknowledgement of our special "learning signature" (that's what our family calls it) by me can be of some help to others struggling to gain acceptance and credibility in life. My father is also on the spectrum and he's 73 years of age. I have also written a book not yet published. I've contacted a publisher and hopefully I will be able to meet people like you to tell the real story of what life is like with our unique take on the world.

My career as a record producer, though successful in many respects, suffered tremendously because of my autistic learning signature. Not due to a lack of talent or ability to perform and play music. Most people consider me a genius, whatever that is. It's my inability to fully understand peoples body language enough to 'read between the lines' of certain situations or conversations. Problem is, even at 42 years of age, one still has not had enough time alive to understand everything.

If the public would have me, I would gladly make my story even more public. I will make the rounds at colleges and other venues so that anyone dealing with the reality of ASD (specifically adults with Asperger's) can have a meaningful conversation about daily, even hourly, struggles that sometimes require human understanding and assistance. That's why I started a non-profit that hopefully addresses those needs. It's starting out as a national savings account for adults with autism; all spectrums. This is something that many have told me is desperately needed and I intend to make it work. I appreciate the support and encouragement from the autism community as well as others to make this a reality. Invite me to a college near you anytime and let's 'get it started'.

-Michael Buckholtz

Yes, at 46 I'm learning what my siblings were born knowing.

I'm writing a book about my experiences with it too, and I'm 21.

I've told more people in the last few months than I ever have - now one of my colleagues knows, and a few of my close friends. Every time I 'come out' I feel so liberated and so free. I'm just so wary of the stigma that still surrounds it and of what a number of people - including some of my closest friends - would think were I to tell them that I don't.

I plan on coming out in literary form, that way they can understand it properly without freaking out. I'll have to get an official diagnosis (which I did get years ago, just not a 'paper' one)... I imagine it would be a struggle to get one now, purely because of how well I've adapted and cope with everyday life.

It's funny how there's such a lack of support for adults, and that the biggest problem seems to be convincing others that we actually have it. I wish there was some kind of a support network.

La Repubblica, Thu 4 3 08 (yesterday). p.18
for a translation you will have to wait a little. I am too tired now
Lapo Marini is the name under which my book appears

La Repubblica is one o the two most important dailies (700,000 copies sold – not tabloid)


AUTISMO SCONOSCIUTO

In vari Paesi un mese dedicato alla sindrome.

di Lapo Marini *

Aprile mese dell'autismo

L'autismo colpisce, per quelle che sono le statistiche ufficiali, una persona su cento nel Regno Unito una persona su 150 negli Usa. Queste statistiche sono attendibili solo in difetto. Intanto è probabile, ad esempio che quelle della GB siano più attendibili, dato che il controllo sulle condizioni sanitarie è molto maggiore in questo paese che negli Usa, per il semplice fatto dell'esistenza di un sistema sanitario che copre tutti i cittadini in modo abbastanza centralizzato. Anche le ricerche sull'autismo sono più sviluppate in GB. In altre parole se ne sa di più. I dati sono comunque per difetto perché esistono una quantità di situazioni borderline che sfuggono alle diagnosi ufficiali.

Classificazione

Tra le persone che sono state classificate come psicotiche (l'autismo non è una psicosi, cioè una malattia della mente, ma un difetto, semmai, della mente) ve ne sono certamente moltissime che, una volta classificate schizofreniche o maniaco depressive o paranoiche, non passano più al vaglio di altri tipi di diagnosi. Sono ricoverate o assistite in qualche modo, oppure si sono sempre arrangiate per vivere e non si sottoporranno mai a diagnosi, neppure sanno che tipo di disabilità sia l'autismo ed è estremamente improbabile che i medici che hanno incontrato nella loro vita sappiano qualcosa di autismo. Si tenga conto che solo dagli anni '90 si comincia a sapere qualcosa di questa cosiddetta sindrome. Inoltre di fronte alla presenza di sovrapposizioni sempre presenti di depressione e di altri disturbi psichici, l'apparato medico-psichiatrico ha la tendenza a occuparsi di quelle situazioni che hanno una soluzione medico-psichiatrica senza porsi il problema se una grave depressione non abbia origine nelle gravi difficoltà in cui si trova una persona autistica.

Sofferenza

Naturalmente quando parliamo di autismo intendiamo spettro autistico, cioè situazioni che vanno dalla incapacità di usare il linguaggio a incapacità di stabilire legami sociali, una incapacità di cui normalmente si ignora il carico di sofferenza e di fatica che essa imponeAnche ammettendo che le statistiche si avvicinino alla realtà si tratta sempre di quasi un milione di persone in GB e di forse tre milioni in USA. In Francia si parla di 600.000, ma il caso delle statistiche francesi è del tutto a parte data l'enorme influenza che hanno qui nelle istituzioni gli psicanalisti lacaniani, del tutto restii ad ammettere influenze genetiche, e quindi, in un certo senso, l'esistenza stessa dell'autismo come qualcosa di diverso da una forma psicotica grave.

Che tipo di aiuto?

Assistenza alle famiglie che si trovano sempre di fronte a responsabilità insostenibili. Essendo l'autismo di origine genetica accade spesso che in una famiglia non ci sia uno solo a soffrire della sindrome. Nel caso di gemelli omozigotici le probabilità che ambedue i gemelli siano autistici sono del 90% (il che conferma, se ce ne fosse bisogno, l'origine genetica). Nel caso degli autistici è raro che il problema non corra nella famiglia, se non altro come una corrente sotterranea. Naturalmente se una madre appartiene allo spettro autistico (come caso di una Asperger ad esempio, che comporta la capacità di esprimersi molto correttamente nel linguaggio, ma non quella di avere rapporti sociali pregnanti) i suoi figli e figlie si troveranno di fronte ad avere una doppia dose di problemi: delle difficoltà di origine genetica e la mancata sicurezza di avere una madre protettiva. Difficile sbrogliare la matassa soprattutto se pesa il pregiudizio psicanalitico che attribuisce il peso maggiore nell'esistenza di difficoltà ad affrontare la vita, ai rapporti con l'ambiente familiare. Qui una conoscenza più esatta possibile della componente genetica sarebbe fondamentale.
Tuttavia l'assistenza non basta, occorrerebbe combattere con tutte le forze per diffondere tra i medici generici, nel pubblico colto e meno colto, tra i giornalisti e nelle istituzioni scolastiche la conoscenza, per quel tanto che si sa, della natura reale del problema. Se si chiede ad un medico del sistema sanitario, a un'insegnante o a un giornalista di cronaca che cos'è l'autismo, come si manifesta nelle sue varie forme e che origini ha, è probabile che la risposta sia "sono i bambini che non parlano" e che molto più in là non si vada.

google translator can do a quick (and dirty) translation.

go there:
http://www.google.com/language_tools?hl=en

Select the text of the italian post, paste it into the text box and select "italian->english"