*Emma approved this post before I published it.
Yesterday was our second day working with Soma. And just when I thought I could not be more blown away by anything Emma wrote, she wrote the title to this post. It was in response to a conversation about Mesopotamia, ancient civilizations, buildings and building materials, which led to Soma discussing the types of structures built, one being temples. Soma asked Emma why people would go into a temple, to which Emma wrote, “pray”. Soma then asked her if she went into a temple what would she pray about. Emma then wrote, “I want to know what god thinks about autism.”
I have to interrupt this to say, I am not a believer. I had a moment, a very brief moment in my teens and again in my thirties when I so wanted to believe, I needed to believe and yet still could not really believe in any way that made sense to me. God is not something I obtain any solace or strength from believing in, and well… truthfully, I’ve stopped trying. I don’t need to believe. Having said that, my husband and I talk about god, religion, spirituality, the practice of acceptance and staying present, meditation, doing the right thing, and what a power greater than ourselves means on any given day. So there is a fair amount of “god-like” talk going on. In addition, my mother is a theologian and has taught bible study classes for many decades. She used to attend a Torah study and I believe does again now. She is one of the most knowledgable and interesting people I know of to talk to about religion and god.
The point is, Emma has certainly been present to a great many conversations about god, the bible and religion. But never has she said the word “god” let alone, used the word in a sentence. And it must be said, we never thought to ask her… When both children were still very young I bought a number of children’s books on a variety of religions, and made some general statement about the importance of learning and deciding for yourself what you believe. We still have those books; I’ve never seen Emma look at them, but that doesn’t mean she hasn’t. And anyway, as I said, it’s not as though she hasn’t heard a great deal of talk about God.
Later I asked Emma if she believed in God and she wrote simply, “yes”.
If there is a god, I’d like to know what god thinks about autism, too. I’m guessing here, but I should think god is embracing and celebrating all neurologies. After all, most people I know who believe in the existence of god believe that god created us the same and equal and beautiful beings, given the gift of choice. We can choose to act with love, compassion and kindness or we can choose to behave in hurtful ways that cause tremendous pain and suffering. Either way, according to those I trust and respect on the topic, God is always there for us, all of us, all the time, and without exception.
As an autistic adult who has lived his entire life in a state of both oppression and curious wonder at the content of narratives, I find the question rather absurd, if not frightening. It provokes a number of counter questions.
Probably first and foremost is the age-old query: Whose god? Because the god of testaments new and old did not really seem to like anybody. Everyone outside of a specific group, whether it be the Jews or Jesus’ immediate circle, was basically vermin to the authors of the associated texts. So the likelihood of them treating the autistic with anything other than ill intent is small.
Gods such as Odin, whom to followers represented things like wisdom and intelligence, on the other hand, would probably want to intervene in the undeclared war. I do not believe it a coincidence that my writings contain at least one reference to Odin per text.
However, the question is irrelevant largely because in the end, it is Human beings who make decisions on behalf of other Human beings on this world. And as long as the Christian god is able to to make Human beings make decisions based on a complete absence of fact, asking its opinion of anything would be foolish. Stone people invent stone age gods with stone age morals, and so forth.
@I Sill Find It So Hard
My own opinion (for what it’s worth!) is that god/a higher power/The Force or whatever you want to call it is NOT AT ALL the same thing as religion, which is what you seem to refer to in your first ‘age-old’ question.
God is within you – your heart, your mind, your soul, your conscience, whatever. Religion is outside you – it is a community of people who share similar ideas of what god is, and who adhere to certain rules which they believe that god has laid down.
Personally, I embrace the former and reject the latter. My higher power helps me to make choices and decisions. A book which is so vaguely written it can be subjectively interpreted by anyone does not.
I Still Find it So Hard – Saying someone’s question is “absurd” and “foolish” is to put another person down. It is an opinion stated as though fact. There are a great many places where this sort of commenting is welcome and where you will find others who do likewise. This blog is not one of those places. If you cannot refrain from making such comments, please do not come here.
Disagreement is fine. Respectful discussion is welcomed. Insults and name calling are not. If you are unable to stop yourself, I will delete your comments and block you. I’ve never had to do this before, and I am hoping you will respect my rules.
Thanks, Dean. Please. Make the choice to say whatever you want with respect and kindness and not in ways that are hurtful. This comment was painful for me to read. And it hurt, in fact it still hurts. I am hoping that was not your intent.
A whole lot of pride in such a beautiful creation.
Thank you MrsC. ❤
What a profound, intelligent question. It’s had me sitting here thinking about the implications for the past hour. While I am unable to answer the question, what comes through here is what I can only describe as grace, and if there is a god then surely that god would look upon your lives with favor.
(I’m not a believer — my personal choice — but I recognize the value of faith to others and would never criticize them or their beliefs unless they were opposed to my own sense of morality.)
(((BJ))) Thank you so much for this. “Grace” I love that word. It evokes something intangible, something beautiful yet ethereal; there is great compassion in that word.
I recognize the value in another’s beliefs as well. And I respect those beliefs.
I admit it might be an unusual choice of word for one such as myself who is not religious, given its strong religious connexion, but as the word diametrically opposed to sin it had just the meaning I wanted.
In any case I should be thanking you because reading this triggered a cascade of positive thoughts and lifted my spirits this morning.
I am so, so glad. Your comments have been so wonderfully helpful and hopeful for me to read.
Yep. Intelligent apperception, which may remain silent awhile, as a child reads a holistic situation, reads a local zeitgeist. Blinding confirmation of the value and necessity of presuming competence. Blinding confirmation that our apperception of the autistic is limited.
Then below that, even more. When Emma offers “pray” and “I want to know what god thinks about autism”, she is streaming her autistic richness through the terms that others use. When Emma says “yes”, in answering the question “do you believe in god”, she is again pouring her autistic quart into the pint pot of our understanding.
Emma has read what others “mean” by all the terms she here takes recourse to. What people mean by god/God/G_d has a complexity coextensive with being human. The point about god is that it’s an ideational reaching out to grasp totality. It’s that reaching out, that meaning, that intending, that Emma will have autistically read across what god means for the people around her. Emma is saying that she understands and endorses what others are there doing, and she too contemplates doing what they there do.
I’m not at all religiously inclined or theologically persuaded, but I have always been impressed by what others do across what god means to them, and equally impressed by the atheism which arises from and precedes god-centred human activity.
I then have an intellectualised sense of autistically characterised persons as doing “god in one person”. That is they have perception and understanding which is radically self-reliant; radically come to across their own sensory-cognitive processing. I think of this as like bat sonar. Sense (autistically configured) is cognitively (and again autistically) processed, and that processing generates perception and understanding which goes out as far into “all that there is” (the god sense, that might equally be a sense of nature, or another sensing of totality) that a person can sustain, and it brings the evidence of what is thereby further sensed, back to the centre, back to self and person. And this continues like an autistic research cycle. God is therefore both a sense of what-is out-there at-the-limits, and a sense that one brings back to the self-centre.
The autistically characterised and developing person, then comes to meta-perspective about the processing of their self that they identify with. Donna Williams is strong in being able to express her come to meta-perspectives. Perhaps most autistic meta-perspectives exist silently: being the ground for what manifests. I would imagine that Emma is aware of her meta-perspectives, and might give us sight of them, if and as she is able to do this across the terms that we employ and are able to understand.
I might say, if I chose to frame things in a Christian manner, that God sees truth in play in the being of autistically characterised persons, that god loves autism, that god is available as resource for autism. More maturely I might suggest that autistically developing persons are positioned to be gods: positioned across potential to be the arbitrars of their own meaning; doing in their own processing what God and religion and theology do for others across what is social and societal.
Colin – I just love this comment. I have read it several times now. I so appreciate the way you’ve written so many things I have thought about, but have not had the words to put together in such a great way as you have… “she is streaming her autistic richness through the terms that others use.” Yes! This is exactly what I thought when she wrote it.
And this, “The point about god is that it’s an ideational reaching out to grasp totality.” What a perfect way to describe how I have experienced the topic.
And metaperspectives… as not only thought, but sensation… as an internalized sense of self, other, sameness, connection, disconnection, then add “god” to the mix and what does that mean? What does that mean for any of us?
Being a believer I’ve had to struggle with the why’s … Why Gracie? Why Autism? Why is it so hard?…. But I still walk away with knowing God is a god of love, compassion, acceptance of us ALL. He has a plan far greater than my mind can fathom. If anyone is interested I’m reading a great book right now that helps me draw strength in knowing that this world is just spinning and God is in control. Wouldn’t it be a shame to know that this was all for nothing.
Autisms Hidden Blessings by Kelly Langston
There is an autistic man, http://www.williamstillman.com who has written a number of books about god and his beliefs, though they veer into the supernatural more than toward god, at least the traditional “god” that is usually spoken of. Have you heard of him or read his any of his work?
Nicole, I think that the important factor, is that you, like Ariane, have a personal philosophising which can turn the wheels of your child’s autistic process, when you stand with them and share all that you are with them as they encounter life.
Autism, being autistic, is so challenging, that the wheels of processing can turn slowly or even stop momentarily. When a child can hook up to the engine of a strong mother, the wheels of personal processing can keep turning, and then everything remains possible.
Personally “knowing” what you do, living the faith of that knowing, gives Gracie something powerful to take into her own person, something she first sees in action in her mother.
Gracie is a lovely name.
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I think much of what I wrote was either not read properly or assigned an unintended meaning.
I will say this again. Gods that are invented by humans tend to reflect the morals and ideas of the people that invented them. So the question of whose god still applies. Is it the bronze age god whose sacred texts are overflowing with the killings, actual and urged, of foreign peoples? Or the one that engages in random, unjustified slaughter for reasons that would get a real person locked away for life? This is a highly relevant question. Because if your daughter means that one, then there have been some serious gaps in her education.
I only wish I could say I were joking when I say that if Autism Speaks et al started up campaigns saying how much the bronze age god hates autism and wants it gone from the Human population, it would not surprise me in the slightest. I will admit that I do not deal well with answers I am not expecting, but to ask people an open question and expect only answers to your liking is a wee bit off.
Throughout history, people disfavoured by those in power have been labelled as abominations and hated by the god of either testament. Jews, blacks, different nations, you name it. To ask the very worthwhile question of why the opinion of an entity that behaves in the manner of the old and new testament god even matters would be highly recommend for all autistic individuals. Because I have a funny feeling this article will get a very “god wants you cured” response somewhere very soon.
Thanks for explaining what you meant. Yes, it would be good to know when anyone invokes “god” what exactly they mean as the word is used as though all of us knew what the individual using the word meant and the meanings vary depending on the person using the word.
As I wrote above, this space is all about discussion, not condemnation, insults or claiming superiority over another, so if anyone commented about how “god wants you cured” I would either not allow the comment through moderation or I would give the commenter a warning that these types of comments do not encourage discussion of any kind. But I appreciate you bringing this up, as it had not occurred to me that anyone would make such a comment, but you are right, they may. Hopefully they will read these comments and realize they are in the wrong place and take their comments and go elsewhere, but if not, I will intervene.
Thanks again for coming back to clarify, I do appreciate it.
Maybe I’m reading way more into this than there is. But…used god with a lower case g until you got to the part in your post when Emma started talking about believing in God. Then you switched to God with a capitol G. Did you do that on purpose? Or were you talking about gods in general until Emma mentioned God and then you got specific? I know this wasn’t the point of your post,but I thought it was interesting how it unfolded.
Also, I think it is great that Emma has her own beliefs that may be different than yours are, and that she is confident enough to let them be known.
I did want to respect her thoughts and as she said she believes, wanted to honor that by capitalizing. My husband and I both believe our children should make their own decisions and not feel pushed one way or the other. I’m glad she feels confident and safe enough to say these things too!
Beautiful! This is not the first time I have encountered a situation where a young person with autism and limited or no oral speech – and from a non-religious family – has wanted to talk about God. I think Emma and others have a very special relationship with the divine, and many of them talk about being here for a purpose. When asked to explain, most say they are here to teach us to love, And that they do! Thanks, Emma!
Thanks Char. I am thrilled she’s discussing her thoughts!!
When my son was about 4, we were driving home having a rare conversation with each other. He started talking when he was 2 but actual conversations were rare. He was still in a place behaviorally where i didn’t dare venture beyond providers or school because they were so overstimulating and upsetting. He had never been to church nor really been spoken to about God. Out of the blue, that afternoon, my son says, “mom, God uses me.” I am thinking this is an odd statement for him to make so i asked him how so. and he replied “God uses me to give YOU eyes so you can see.” That is still by far my favorite conversation ever with him. So simple and so profound. And he does—the world is a beautiful, amazing place when seen through Sean’s eyes/perspective. I have found Autism to be a blessing for us. It forced us to slow down; to re-evaluate priorities; and to take great joy in the simple, every day occurrences like a 2 minute conversation.
I have said something similar. Re-evaluating priorities and slowing down and being present… these are all so under appreciated by most… feeling really grateful to have the opportunity to live the rest of my life differently!
“(I’m not a believer — my personal choice — but I recognize the value of faith to others and would never criticize them or their beliefs unless they were opposed to my own sense of morality.)” @bjforshaw , that is exactly how I feel and try to act. very well said.
Ariane, I think if your daughter, brought up with knowledge about religions and the freedom of choice, has a genuine interest in god, a wish to believe and the depth of reflection to try to make sense of her life and of god’s place in it, to formulate such a question, that’s a really good thing.
No matter what you think about religion, I think this is a great, almost a philosophical approach to her perception of self.
I completely agree! It’s exciting!
Wow, I love Misty’s comment. I believe this to be true about “what God thinks of autism.” He uses our kids to give us eyes to see the invisible God and to slow down and enjoy what He has made. 3 months ago I had a conversation with my son, age 10, that absolutely floored me and changed my view of autism and my son forever. I asked him, “What are you thankful for?” Philip replied, “AUTISM.” “You mean you are thankful for having autism?” I asked incredulously. “ANYTHING IS GOOD IF YOU SEEK GOD,” he answered. (I have discussed this in my blog in June under the posts An Awesome Talk with Philip and Learning From Autistics) To piggyback bjforshaw’s comment, I do see that God is about grace. He looks upon us with favor despite our shortcomings, weaknesses, and hardships. I believe He is always seeking to bless no matter the circumstance and in spite of circumstances that seem hopeless and impossible. My son has done more for me to help me understand God than anyone else.
BTW, Philip also uses RPM to communicate and he is doing phenomenal! I am excited about your week with Soma and can’t wait to hear more updates!
Love the story about your son.
Soma should be training anyone and everyone. She is absolutely incredible!
You should ask Emma if she would like to go to church/temple/circle ect. When I was just a bit older than her (14-15) I went searching. I went to a few different churches, a Jewish temple, a Hindu temple and a Sikh temple. In the end, I was Pagan for a while and now I’m atheist. It’s good to explore and most places are very welcoming to visitors. In the end I’m sure she’ll find the answer she needs somewhere.
Also glad you and Dean got your misunderstanding sorted out. I like his writing a lot (even though he can be a bit angry at times – he speaks to me of my angry times as well because unfortunately we had them.) But yeah, he’s a good guy at heart.
And I just noticed now there’s a tiny happy face in the bottom left corner of your page 🙂
I don’t know how that came to be, (the smiley face) it’s always been there though! 🙂
After I caught my breath from the sheer unexpectedness of Emma’s reply to Soma, so many questions came to mind. Was she being funny or sincere or both? Emma is so mischievous it wouldn’t surprise me at all to hear her say that with an ironic/sarcastic twist. It was also very interesting that she didn’t say she wanted to know why god “caused” or “created” autism or why autism “exists”, just what god “thought about” it. Does she mean that god (in her interpretation of what that means) might have some useful/helpful insights? Judgements? What does she really want to know about what god thinks about autism?
As you said, Emma has heard us talking many times about god. She knows how you feel and how I feel. For the record, I believe in an intelligence that we and everything in existence is part of/connected with. I also believe that consciousness survives death. Emma has been talking a great deal about her uncle Chris dying lately. Does her thoughts about death relate to her god-concept?
I can’t wait to hear more from the front lines today–and get my mind blown all over again!
It’s hard to say… And I also thought it interesting that she said, “autism” and not what does god think about Autistics or about me or about humans?” And actually what the hell is this word “autism”?
The amazing adventures continue!!
All the comments above, although from different points of view, express many of the things I think about and ponder, and again it is the Mystery of life, of autism, of love, of tenderness, of bonding, of God, that intrigue me.
The beauty of the Bible is that throughout it expresses what is at the heart of all its numerous authors, “what is the meaning of life?” One of the Jewish sages said: “who am I? Why am I here? And who are all these others?” And Hillel said: “If I am not for myself, then who is for me? And if not now, then when? But if I am only for myself, then who am I?” And the Golden Rule, central to all religions, says: “do unto others as you would have them do unto you” and Jesus reiterated “Love your neighbor as yourself…”
The human search for meaning is profound, and as Dean pointed out,has always existed, and has been answered partially by the construction of god(s) who will forgive, love, give hope to everyone who asks/seeks.
Of course God loves autism because it gives all of us an insight into the deepest yearnings for bonding with all human beings, and autistics help us to do just that. Instead if pushing away or aside anyone who appears to be “different” we are now on a steep learning curve not just to accept or understand, but to embrace and love “all those others”.
The God-word is charged with so many meanings that I have to construct and live with my very own. To me God is not a person who thinks/feels/acts but a power open to everyone, a force for loving, bonding, understanding, seeing into the essential nature of everything, everyone. God is there for each of us who hears the telephone ringing but doesn’t bother to answer it. Emma has picked up the phone and asks a question that can be broadened to include all of us: “what does (G)god think of us?”
When I left California for Aspen, many of my friends, whether secularists, Christian or Jewish asked me “Where will you find God in Aspen??” And I answered “it is obvious to me that you’ve never been to Aspen..”
This past week has been the celebration of Sukkoth, when Jews globally build temporary shelters by their houses in celebration of Bringing in the Harvest, but also in memory of the 40 years of wandering in the wilderness when only temporary shelters were available, but the protective presence of God was always with them. I love those religious rituals that remind us of who we are, why we are here and how to treat/love/bond with “all those others.” We are all wandering in the wilderness, but every now and then someone asks a question that makes us stop and ponder. Thank you Emma.
Like I said, you are one of my favorite people to talk to about religion and god.
Ariane,I have found that so many non verbal children and young people “talk” about a belief in God. When Kimberly learned to communicate via typing at age 6, she told me she had been talking to God since she was 18 months old. Since we don’t have to talk out loud for God to hear us, I imagine she talked to God when she couldn’t talk to us. She told me that “talking to God helps me cope with my struggles.” (Kim has had epileptic seizures since she was an infant.)
So you are here in Austin? We’d love to see you two. Message me on Facebook if you have time for lunch or such. Kim says, “Hope we can get a chance to visit.”
Yes, we leave Austin tomorrow, but you are so thoughtful and please tell Kim we will try to make it work next time. This has been an exhilarating, though utterly exhausting trip!
I find Emma’s question is very amazing. Emma gets right to the heart of what she is thinking. Considering the frame of the subject and how the question you asked Emma shows a high degree of abstract thought that many adults don’t get. Whether I believe in god personally doesn’t have any bearing on how amazing Emma’s question is.
I agree, Dave. Thank you for this. I am so impressed with her, so impressed!
I think God loves all of us the same whether we’re neurotypical or not I also think God made us all different so that each of us would have something different to contribute to the world.
Good thoughts Nisha.
I want to thank Emma for starting this conversation! I have had the pleasure of interacting with children and adults who are Christians who also have ASD. I think one of the most profound comments came from a teen who told me “My body has autism, but my spirit does not.” I’ve thought about that comment a lot, and suspect (after talking more) that while some things on this earth experience the differences of autism, her connection with God is unhindered. I believe my friends would agree that God is way more focused on loving and seeing an individual as opposed to looking and seeing some sort of a disability! God probably invented “person first” language.
What a wonderful comment. Thank you Barbara. As an aside and I know this wasn’t at all what your comment was about, but within the autism community many Autistic people prefer to be called “Autistic” including my daughter. I actually wrote about this very topic a few weeks ago as so many people believe otherwise. I will always defer to the individual who is autistic to tell me what they prefer, of course. Here’s the link, should you care to read it… https://emmashopebook.com/2013/06/27/person-first-language/
I love that teen’s perspective!! Beautiful
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God hates autistic people, to him were just freaks, he thinks we chose to be autistic, when he of all people should know that autism is not a choice but he doesn’t care, sitting atop his golden throne in the heavens why should he care, rather that giving any of us a chance it’s so much easier to send us to hell.
Josh – words will not help, I know, but I hear you. I am not a believer, so the idea of heaven and hell and even “god” are not concepts I can use. I have only a small idea of how awful it must be to be treated as less than equal to other human beings and I imagine that must feel like being in hell.
Oh, Josh, I hope you are not basing your views on what God thinks of autistic people because you have been treated poorly by people. Some people can be cruel and judgmental, and I am sure that does feel like hell. However, I believe to God you are “fearfully and wonderfully made”. According to Psalm 139 and many other places in the Bible, God knew you, loved you, and planned your life before you were ever born. He thinks about you all the time. You are special to Him just like you are. If you have never read that chapter in the Bible, I would encourage you to do so.. You are loved!
I do not have an answer that I can completely rely on, but the strongest reason that has occurred to *me* is that ‘the world’ needs to see itself for what it truly is, and autists are a portion of God’s method.
While autists are most definitely NOT perfect, they DO fit what the bible says is correct as to thought and behavior. Examples:
1). The world lies constantly. The bible says it is wrong to lie – and the type of lie seems immaterial. Sound familiar?
2) The world constantly shows ‘rank-based favoritism’. The bible says letting social rank take precedence over justice – I.e. one rule for the powerful, and another for the weak – is wrong. Again, a trick question for most autists.
The world oppresses ‘aliens’; it puts stumbling blocks, literal and figurative, in front of the ‘blind’; it curses the (socially and literally) deaf. All of these things are specifically forbidden in the bible. Most people, if one looks at their actions, both practice and approve of all of these things.
Autists are NOT most people. It gets them in a LOT of trouble – in and out of church. ( In my case, more trouble IN church than outside, though both environments supply plenty of hassle and heartbreak)
Finally, the reason I picked on the bible is that I simply am far more familiar with that system than others – as in I could come up with answers from memory readily. I doubt I could do that with Buddhism or Asatru.
I remember over the years I felt autism kind of ruined things for me. If it wasn’t for autism, I would have gone to camp as a child and I wouldn’t have had to leave public school and I would have gotten a yearbook. I wouldn’t have felt ostracized and bullied so bad. In junior high, I was kicked hard during art class just so the bullies would get me to do something. I wouldn’t have such terrible meltdowns either. I was lucky to have had happiness still. Not everybody is lucky. I would often smile off in space and sometimes some kids would get angry right in front of my face. I went to a camp as an adult and was treated the same way. It turned out I didn’t belong there. I kind of regret going there. I was fortunate to have had a few friends in school who I now hardly ever see. I haven’t made new ones. I remember being called lazy and liar during all this time all because I didn’t seem to respond quite right. I had a job and sure this person needed me for a while to clean but I felt treated not so good and I had to leave. The only incidences I remember which were happy were piano playing, playing the organ, and dancing with pom poms. I’m trying to help myself better so I don’t end up a bitter old woman. I’m wondering how in the world I’m keeping my faith in God. My knowledge of what the Bible means and says and prayer has kept me going. I hated my aggressive over time. Just HATED it. It made me hate myself so much. I have felt like I’m not worth shit sometimes.
By the way I have been called witch, crazy woman, and the most self centered person on earth by my own mother. That’s why they call it autism. I can’t believe God would allow such demonic traits to exist in autism. I feel like calling myself degrading names sometimes. I won’t say them here. I don’t see me loving myself this way. I keep thinking what if I had been ‘normal’ and had done more. hmm maybe things would have been different. My father often said that if mother had taken her vitamins I would have turned out better. When he said that, it made me hate him more. He’ll never accept it. I can see that. Guess what I just don’t care. I know by now that God does allow such tragedy to exist.
I feel like the wonderfully made person in a freak body that God should have taken up to heaven a long time ago. How can I even believe I’m fearfully and wonderfully made when I don’t feel worth it down here? hmm think about that.
Autistics are generally wonderful people inside no matter what they seem like on the outside. I don’t think it was God’s will that people be born with autism.
Autism isn’t God’s will. I certainly hate it. for it separates you from the love of God through people. I CAN’T solve my loneliness problems. just can’t. so I say what’s the use?