What I Wish I’d Been Made Aware of When My Daughter Was Diagnosed With Autism

What follows are some of the things I wish I’d been told (and given) when we learned Emma was Autistic.  These are the things, in retrospect, I wish all those doctors, specialists, pediatricians, therapists and people who dedicate their lives and careers to autism had told me, but did not.  I believe our lives would have changed dramatically had we been told even a few of these things.  It is my hope that for those of you who may be at the beginning of your journey with an Autistic child, this list might help you avoid some of the many, many mistakes we made and a great deal of unnecessary pain.

1.  Seek out the work of Autistic people ~ most of the work I’ve listed was not available when my daughter was diagnosed, but it is now.  Take advantage of all that is out there, these people are leading the way.  If I had to choose just one thing that has had the single greatest impact on my life and the life of my daughter, it is these people.  My gratitude to all of them doesn’t come close to covering how I feel.  I have compiled an extensive list of blogs and books written by Autistic people as well as a couple of documentaries that are a MUST WATCH!   on the “Resources” page on this blog.  Please go take a look.

2. Autism is not a disease.  Read Don’t mourn for us by Jim Sinclair.  This may take some time for you to understand.  It’s okay.  Get the help and support you need so you can better help your child.  Try to think of autism in the same way you think about any groupings, a Mac and a PC, fiction, non-fiction, memoir and young adult, a shirt, a pair of pants, shoes and socks, a microwave and a gas heated oven.  Autistic, Neurotypical, Allistic, (or my personal favorite, coined by a friend) NT-NOS, we are all human beings.   Try not to judge one over another.  Judgment will not help you help your child.

3.  Presume Competence.  (This ‘post‘ helps explain what presuming competence means.)  If a therapy and/or professional does not approach your child with a presumption of competence, please consider finding one who does.  Tremendous long-term damage can come from not presuming competence.  Rethink how you view communication.  Listen to your child, not just to words, but to body language, facial expressions.  You may be surprised by the ways your child is communicating despite not being able to do so verbally.  Teach her to point with her index finger, first with support if needed and as time goes on, fade the support. Give her the appropriate tools and support so that she can learn to type or communicate by pointing to a letter board.    There are many wonderful iPad apps that can help with this.  Begin with sequencing games and colored tiles, or if she’s musical, notes.  Join them together to make patterns.  Show her first, have her mimic.

4.  Do not speak of or about your child as though they cannot and do not understand or hear you  (read Barb Rentenbach’s book for more on this).  This is something we did without thinking for years.  Sadly it is not the only regret I have, but one of many.  Still it is worth repeating.  Chances are your child can and does understand what you’re saying even if they do not show any signs that you recognize.

5.  Throw out everything you think you know and question everything.  There is a massive amount of misinformation/myths disguised as truth and fact regarding autism.  You may hear people say things like “They are in their own little world,” or “they are imprisoned behind their autism” these phrases are perhaps an accurate reflection of what non-Autistic people feel about the Autistic person in their life, but they serve to divide rather than unite and ultimately serve none of us. Be suspicious of anyone who says they know what causes autism or how to “treat” it.  Disregard any organization that describes autism and your child as tragic, an epidemic, a burden or any other word generally reserved for warfare.  If you read or hear something that causes you to feel fear, walk away, it is most likely inaccurate and intended to make you afraid.  None of us are able to help our children when we are terrified.  Fear can cause us to make decisions we will later regret.

6.  Set your child up to succeed.  My daughter is extremely sensitive to criticism.  Saying “No!” or criticizing her does not help her learn, but instead makes her feel badly about herself.  Encourage her with smiles and by asking her to try again.

7. Do not try to make your Autistic child behave like a non Autistic child, instead encourage your Autistic child to be the very best ______ (fill in your child’s name) they can be.  For more, read ‘this‘.

8.  Avoid comparing your child to any other child, Autistic or otherwise.  I have struggled with this one and continue to.  All I can say is, this is a work in progress. I hope one day to “know” this and refrain from doing it as it gets me into “compare and despair” thinking faster than anything else.  Emma is Emma.  She is best served when I remember this fact.

9. We parents are fallible.  We will make mistakes.  I’ve made dozens.  I wish I hadn’t made quite so many.  But I have.  If there is one thing I know without a doubt it is this – I will make mistakes, I am human.  I can admit my mistakes, tell my daughter how sorry I am, make a living amends to her by doing everything in my power not to repeat the mistake and continue to move forward without beating myself or anyone else up.  As my wise mother once said, “Show and tell your children over and over how much you love them, and one day they will forgive you.”

10. Get to know Autistic adults.  One of the single biggest misperceptions surrounding autism is that autism is only seen in children.  Autistic adults are often our best teachers and  many of them are leading the way so that our children’s lives might be better than their own.  These people are courageously and tirelessly pushing back against the deeply ingrained prejudices, biases and misperceptions that are rampant within our society.  (See #1)  It is my goal to honor these people who have beaten a path ahead of my daughter so that she may more easily live in this world that so often will not and does not accommodate her or give her what she needs to flourish.  They are speaking out, let’s all get behind them and give them the microphone so that more can hear what they are saying.  One day, the person holding that microphone might just be your child!

The year after Emma was diagnosed ~ 2005

Em - 2005

127 responses to “What I Wish I’d Been Made Aware of When My Daughter Was Diagnosed With Autism

  1. I wish all people to stop believing the common myth that we are in our own world. We in fact share the very same world! Our autistic experience of that world is often magnified by our sensory systems. Our behaviors that you find unusual are often solutions to the problems experienced due to the way information is delivered (via sensory system), processed, stored and retrieved in our brain. Add in the fact that speaking words (whether or not we can perform them) are often unreliable. It may appear that we are so different as to be in our own world, but this is NOT TRUE!!! We in fact all share the very same world. When you say or believe that we are in our own world it allows a line to be drawn – a line that separates autistics out into a place of “otherness” – a place where people then feel more comfortable assuming all sorts of untrue things about us as they are unable to relate to this presumed experience of us being so very different as to be in our own world. Please stop saying and believing these words because they only serve to trip you up. Thank you for reading my words.

    • YES, very much! Thank you Judy, and also thank you, Ariane. I wish there were a way to get this post to every pediatrician and developmental pediatric specialist. Of course, many of these resources on positive perspectives on neurodiversity were not available almost a decade ago when M was diagnosed — and Ariane, I suspect that was also true of you all, so it’s as understandable as it is regrettable that we were pulled in to the “resources” on fearing/curing autism that *were* most available to us at the time. But now there is no excuse for parents being “aware” only of the autism-as-dread-disease model, and the “in their own world” deception that Judy dispels so well here.

    • This is an excellent point Judy. I will think about this more and see what I can come up with in just a few sentences to reflect this suggestion.

    • I think we do this “in their own world” thing because we hear it in reference to ourselves all the time as well. I’m “only” ADD, but I can recall hearing this about myself so frequently as a kid!
      My son seems to be merely processing during moments I’d once wondered where he had just popped off to – but his teacher has commented to me on a regular basis that she thinks he also has ADD, because he seems to lose focus frequently. I’ve argued against this, but I don’t know what else to say might be going on – but that’s what we as parents are trying to do, is figure out how to advocate without speaking for our kids…it’s a dicey process!

    • Yes, this! EVERYBODY has an interior “world” in addition to living in the exterior one. Autistics may have very strong and vivid interior worlds (and introverts and creative people do as well), but we’re not unaware of the exterior world; we’re hyper-aware of it. We live in the exterior world along with everyone else, just on an ultra-high level of detail.

      (I have a young cousin who’s also autistic. My grandparents know that I am, too, but I don’t think they’ve really absorbed what that really means. I told them this, and they looked at me like I was speaking Finnish. People who need to know this are still not getting told this.)

      • Chavisory–I agree. My inner world is very detailed, often in response to the intensity of the outer world. I find it soothing to have a mental space to work through conflicts safely. It’s good to have mental control when sensations scamble my in the moment thinking.

    • Judy – just edited and added this to #5. I am hoping to submit to HuffPo and so kept it short as I will have to lose about 200 words before submitting to them. But it’s a start… tell me if you think it’s okay. It doesn’t go into the sort of detail you have so beautifully here in your comment, but hopefully it makes the point.

  2. I love these! All of them. Especially number 8. I wish I could say I am free of comparing Cali to others but I still make the mistake of doing so. This is an important reminder for me as are the rest. Cali and I are years behind where you and Emma are today so I greatly appreciate this wisdom and advice. Thank you!

  3. Oh and I forgot to mention what a beautiful picture this is of Emma. Those eyes!

  4. Katrina Phillips

    YES. 10 x YES, actually. And your Number 1 – that would have been my Number 1 as well. 🙂

    ***And Judy, I HATE that “in their own world” business as well. The sooner that misinformation gets squashed, the abso-freakin-lutely better.

  5. I disagree to a point,my youngest was in a world of his own.me also to a point when small,
    everything when small was an interferance,it still is with me and my youngest today,i can happily drift off into nothingness have no outside interferance,or conversation and not yearn for it either.
    i think its the word “worlds” that causes confusion,its not a seperate world its a seperate way of being a differant way to think, things that are important to an NT may not be important to me
    stimming is necessity it helps to order,slow down and focus
    every one is differant its a spectrum though we share the core triad of impairments/sensory issues we all deal with our autism in our way.at our own pace

  6. ((Ariane, Emma, Richard))
    Imagine how perceptions would change if we were given these 10 pieces of information with a smile upon dx, as opposed to having the news ‘broken’ to us with an infinite amount of resources on symptoms, warning signs, and lists of therapies bent on treating our deficits and delays and making us appear as ‘normal’ as possible.
    This post brought tears to my eyes… stop it 😉 ❤

  7. i did post but not sure where it went
    both myself and my youngest “was in our own world” its the word “world” that is the problem its not a differant world its a differant way to be a diffferant way to think.but yes my youngest was very hard to communicate with , my others not so.
    we are all differant,what others do things for i.e stimming etc i will do for other reasons stimming is necessity for me and mine it helps to focus,order,and calm.and blocK
    we learn at our own pace each to there own.so what if my kids are not up to where other kids are,i dont care they have got where they are and that is a great achievement.The sooner people stop seeing autism as an anomoly and see us as a person the better

    • Right, “in their own world” is inaccurate, it sounds like it was more a feeling of being different.. Would you say that is a more accurate statement? Different not wrong. Different not “in another world”?

  8. #4, so much. My grandmother usedd to say, “Never talk about children in front of them, it makes them silly.” But I think it makes us silly…much of the time, I’ve done it defending him, or reasons that I’m doing things differently than others think I ought to, but I know there’s been other moments of voicing frustration. I’ve stopped this now – and have been coaching others to stop as well. It really is a habit that’s bad and far too easy to fall into.

    • This is such a perfect example of “good” awareness for me and my husband. The minute we became aware of what we were doing, we were then able to stop. But it was a long time before we became aware.

      • Yes – I think we’ll be forever evolving – another example was our younger son, who had been in the habit of being the “older” sib for so long, in spite of our exhaustive requests to *please* let us be the mom and dad – we exhorted him to be Mackie’s friend, to stop bossing, see Mackie for the great, fun, and loving kid he is – it took the younger one experiencing being bullied for the first time, and for me to point out his behavior toward Mackie was verging on that – he got really upset at me for raising that point at first, but he processed it, and has really been sooooo much better about it since then.
        I would also like to share that I have two cousins who are also on the spectrum. One is advanced into middle age, the other is in his 20’s – this lack of acceptance is affecting him, even though the state he lives in still provides care – he was asked to leave his gym because he was gazing during workouts, and people were assuming that he was staring at them. I wish I could express how sad that really truly is, because instead of giving anyone a chance to let everyone meet Charlie and understand him, he was sent away. His sister was fighting the good fight for him, but I haven’t heard he was “allowed” back. This is the sort of thing that prompted me to respond to some of the negativity/disease talk the other day on the ASA page.

  9. Great ideas, Ariane – as always! I know we as humans have to learn things for ourselves, but what a difference it would make for the kids if their parents could start out armed with these lessons you’ve learned along the way!

  10. I think it is very complex and not as cut and dried as one puts it. Yes my son lives in this world but due to his condition / whatever you may call autism he cannot be safe and communicate his mental capacity in a way we can really understand. We try to have him in our world but as we distress him by out noises and being in his space this is difficult. What I as a parent would have like to have been told is how unique each individual is and that not all have that special talent but yes all are very special. I love my son and whatever label or however much we fathom out that will not change. I do grieve that he has a life apart from us and I wish him happiness always. AS I DO FOR ALL. My child as well as others that have to cope with autism. I would not like to have to.

    • Hi Anne – thanks so much for reaching out. Probably the most important thing we’ve done with our daughter is figured out a way to help her type and support her typing as it seems to be an easier way for her to communicate her thoughts. I know I already listed it above, but if you haven’t seen the movie Wretches and Jabberers, do watch it.

  11. Not everyone with ASD as a special talent or skill,not everyone excels at things not everyone did well at school not everyone can ride the normal train.

    I am not inspired,i am not talented,i cannot take life by the balls and play a tune i cannot draw rememebr things,(unless i am intrested in it,and i mean really intrested in it)

    I cannot advocate,help or support face to face.

    I am NO genius nor do i pretend i am

    I am not math expert i cannot even do my kids maths homework

    In fact the only skills(if you want to call it that.)

    is being able to read a five book series in a day.I devour words on a page

    I am also very good with computers I.E fixing rebuilding,prgramming etc

    so when people say aspergers is genius tell them only 10% of ASD individuals have some kind of savant skill

    so if you are sat with your child and wondering why your person cannot draw from memory or do complex maths tasks or play music by ear,dont worry,

    genius is in the head of the beholder.

  12. and no i am not saying asd = savant i am not i am saying that only some people with ASD as some kind of savant skill

  13. This is beautiful and so well written. Thank you.

    The one point on the list that I would reword just slightly is in #2 regarding the oppositional phrasings (“two of anything in a similar group, a Mac vs a PC, fiction vs non-fiction”). Our culture focuses too much on oppositional ideas; things are not always opposites because they are different (there is too much of that in “awareness” literature). Nature is filled with variety that are not oppositional. We need to move beyond the mindset that there is an “either” or “dynamic” of opposites that exists. Our neurology is varied, but it is not in opposition to the definition of NT, just like one racial group is not the opposite of another (or one religion or culture).

    I prefer the notion of “variety = good, healthy, positive, essential”
    (just like biodiversity is essential for our planet and multiculturalism is healthy for humanity).

    Maybe we can one day put together a nice resource package for parents, one that uses positive language and focuses on the beauty of variety.

    Thank you again for your thoughtful post.

    • Dee, thank you so much for pointing this out. I’ve rewritten, do you mind taking a look and seeing if this comes closer to what you’ve suggested?

      Really appreciate the feedback!

      • That works very nicely. I appreciate that.

        You know, you and Brenda (Mama be Good) and some of the autistic adults (you have some great folks listed on your previous post), might consider working together to create a resource package (starting from definition, through first steps, toward acceptance and not being afraid). There is so much misinformation out there. It would really help a lot of people, I think.

        And by the way, I’m an editor, so if you need a volunteer to review once you’re done, I’d be there.

        Thank you again for all you do.

        • Dee – thanks so much for taking a look.
          I love this idea. Would it be okay to email you privately about this thought?

          • I’ve put an email I use more often. Please feel free to use it. I am still learning so much and you all have been a great help.

            Thanks so much.

          • If you do choose to do this, I would love to be involved. I may not have all the editing skills of D., not being a *trained* editor (yet), but I can edit, and I would love to contribute to something like this in some way. (I was seriously disappointed that I got into this online group too late to put in a contribution to “Loud Hands”.)

            🙂 tagAught

            (Feel free to email me about this as well – there should be one attached to any of my comments.)

            • Thanks so much tagAught. I am busy with two other book projects at the moment, so I’m not sure I will be able to head up such a project, though I really love the idea and others have suggested such a book, which I would love to be involved with.
              If that changes though I will certainly email you!

  14. Outstanding, AZ! Thank you. This practitioner is listening and will share this information with all the docs in our practice. We are putting this wisdom into handouts that will be given to all families with a new diagnosis. Thank you very much. Sincerely, a psychologist and owner of a psychoeducational practice with many practitioners who serve individuals with ASD.

  15. I think that many of these things are true also for adults receiving a diagnosis. Especially number 1. Great post. 🙂

  16. I think the sad reason parents are not told this is even more so when I was a child the spin on autism largely comes from those with a financial stake in it and that includes doctors.

    This information has been out there for as long as there has been an internet (prior to that a parent had only rather random odds of knowing an autistic adult) but in pockets that were hard to know existed.

    As for the reasoning of why that own “little” world is in any way accurate it’s something we hear. Everyone including neurtypicals processes from a step more within. It’s always the little being usually added that bugs the beep out of me. The truth is more having to occupy two worlds I think. Everyone does it to some degree you have your inner life and the life you live in the exterior world but when the exterior world is so hard on you and so hard to make anything sensical of and seems totally random for a very long time and still more random than you can cope with most of the time that retreat is going to be quite a bit more obvious than the flights of fantasy people take who are coping fairly well with the external.

    Inference is dangerous. Much has been concluded about autism despite knowing our neurological difference by observing behaviour and then making a rather wild leap to what that means in terms of a deficit. For some reason, while these unsubstantiated leaps would surely earn a person an F (or maybe a D if you go to an expense university that isn’t allowed to fail you) while getting a degree once you have it you are apparently allowed to publish nonesense.

    Hardly any person let alone a doctor has the courage to admit they know way less than what they don’t know which is what would have to happen for most of your list to happen.

    • Gareeth, you are right on target. It isn’t that the information is hard to find, it is that the professionals push all this other negative stuff onto folks causing so much fear. And I completely agree with the dangers of making inference that autistics are in their own world; who isn’t sometime in their own heads (it is an essential part of being a thoughtful reflective person); why is it a problem if you are autistic? Same with movements. I have had doctors mention oh, “she moves about a lot and that’s why she doesn’t focus to gain language skills.” Really? So their solution, “let’s create an environment where she can’t move about so much and she can focus on what is being taught.” Uh-huh. Or I could just say, “Hey sweetie, come on over here and see what mama has to show you.” And she will come over, sit down, and focus for the time that is relevant to the attention span of a small child. Why that surprises the experts is beyond me, except that they do not presume competence; they assume she wandering aimlessly while I realize she is exploring and adjusting to an environment in her own way.

      Presume competence is absolutely the most essential. The one advice I would give to parents is to listen carefully to what is said and read between the lines; if the professional is not coming from a point of presuming competence, please consider other options. It can do real harm to your child to say “we’ll try it their way” even for a short time.

      I think the one that is not up there is listen to your child, and not just the words. Learn to read his/her body language, emotions, gestures. I have heard so many folks say “I want to hear her say I love you” and I think, do you not see it? It is there in the eyes, in the hug, in the trust, in the small gestures or the big hugs. Listen with a mind that is open to other ways of communicating.

      Thanks, Ariane. This is a wonderful post.

    • Gareeth – Along with “in their own little world” is “caught beneath a shell” or the word “imprisoned” along with all those images that abound of children, (it’s always children) with their hands and faces pressed against a pane of glass or seated all by themselves in a playground.
      In the eleven years we have been parenting Em, we have met two doctors/specialists who admitted they didn’t know more than they did.

      • Well I did write a poem when I was going on 16 about walking in glass corridor but it was more about the things I could see that didn’t help me in any way feel the people around me were like me. Everything I could see that made no sense and made those people unreal to me and how only occasionally did a real person show up allowing a crack to form. I still wouldn’t want that alienation from understanding NT social norms (which has to be at it’s most baffling in high school anyway) put to sad music and there to be any confusion about what the real prison was.

    • Gareeth,

      Re: Spending more time in our internal worlds becaue of the difficulties we have in understanding and dealing with all the input from our external worlds – *not* necessarily just sensory input, but social input as well, and expectations that we aren’t sure how to fulfill – yes, this was *me*. It still is. I think I might write a post about this, actually. I know that spending time in my internal world has always been rejuvenating and re-energizing for me.

      😉 tagAught

      • Yes but spending time in our internal big worlds is a different thing entirely from how it is protrayed. Right now I am in a period of extreme retreat and it’s needed it’s the depiction of it as prison, as small, and as non useful I have an issue with.

        • Oh, yes. Trust me, I was agreeing with your post above, not disagreeing…. 🙂 The portrayal is wrong. The internal world is *re-energizing*, not a prison. Definitely.

          😉 tagAught

          • Yes, gareeth and taghaut, the inner/private autistic locus provides integration, repair, refreshment, reconnection, “re-energising”, reorientation, return to ‘true’ self.

  17. Boy! What a smart, insightful, dedicated and caring wife I have! Thanks for articulating what we’ve learned (the “we’ve” refers mostly to what I’ve learned as a result of what you’ve learned). Such a great checklist for “newbies.”

  18. None of this was around when I had my eldest son. I wish it had been! My only addtion to this great list would be: Listen to your own heart, if it feels wrong for your child, research more!

    • Aw.. yes. I had a period of time where I didn’t trust my own heart, even now I still don’t always “trust” it!

      • I think if you can’t trust your heart trust the combination of your heart and mind. If people say things to you about anyone you love that you doubt hold both possibilities in your mind but seek the actual truth. (They are after all occassionally right about something even when we don’t want to accept it but that occasional correctness should not overide experience and love)

  19. Thank you Ariane for another awesome post! 🙂 Beautiful picture Emma!

  20. Great post and comment-stream conversation. If I was adding anything it might be something about honesty and authenticity and whole-heartedness and being-consumed; something about trusting that relation and love will see things work out; something about immense collaboration with the child; something about mountains that do get moved, so maybe faith in the child and the autistic.

  21. And, I’m keeping this one: “As my wise mother once said, “Show and tell your children over and over how much you love them, and one day they will forgive you.”” That makes me cry.

    • Me too! Every time, still after all these years, it makes me cry. And she was right, I do! 😉

      • My mother died when I was about 20 years old and very caught up in the midnight angst of a big and wild city; so crazy stuff. My mother had never been able to express whatever love she had for me. Days after she died I had this dream, where in a cavern within a mountain, countless people were sitting down to eat. My mother was a table-mother for a group of 6 or 8 people. I knew then my mother and I had worked it out, had loved and forgiven. That truth still resonates deep within me, safeguarded on an plane beyond my conscious reach.

  22. lenawinfreyseder

    This is a great post! Thanks for sharing the info. You make very great points, too! Emma is so beautiful! And I know all about parenting, daily we review what we’ve done with our kids and always we find we make mistakes or say the wrong thing, but we just have to keep pushing forward with our love for our children and do our best to improve our techniques with our kids daily. And really, educating ourselves on issues related to our children definitely helps greatly. Thanks!

  23. This is brilliant Ariane! We blog about autism too………..our own experiences….and some advocacy stuff too. Would love to be featured on your autism blogroll!

  24. Thank you very much….

  25. Thank you for such a valuable post. My son is 19 and last year I started my own blog with our story, focusing mostly on entrance to adulthood. I also co-run a FB page for our province.
    I appreciate you shared this information.

  26. Towards Harmony

    One of the strategies i have developed recently for my workshops on Autism for parents and teachers is to first talk of neurodiversity and the rights movement and then talk of Autism. It just changes dramatically how people in India who have never heard about Autism perceive it if you do this.
    Thank you for these tips.

  27. Wonderful post! Thank you for writing it.

  28. Spectacular!! Another great post Ariane!

  29. This is AWESOME. I plan to bookmark this and share it with other parents. I know a few who are still new to the journey, and I think this will be helpful.

  30. It’s hard sometimes to trust your own heart and instincts, espically if people are telling you that you’re wrong. But it’s worth it in the end, as I know you already know 😉

  31. Thanks for writing this Ariane! I’ve also enjoyed reading all the comments and discussion in them. One thing that resonated with me is the learning to trust your own heart comment. “Meeting” you (and a few others) online has been a big help to me in being able to do that more confidently. 🙂 I’ve been looking at all the points and trying to choose on that stands out, but they are all so true and so important. Great article!

  32. Patricia Kinirons

    Excellent and very helpful and positive blogs. As the mother of a 29 year old man it is so refreshing to see. Not so back when he was diagnosed at age three. And as referenced above…listen, listen, listen! We all communicate in so many different ways. I have learned more from my son throughout our journeys than I have ever learned anywhere else.

  33. Great post, Ariane (they all are)! If only the doctors, specialists, pediatricians, therapists, and other who work with autistic individuals and their families had been given similar guidelines during their training/education, THEN we might finally see a larger scale awareness. I believe this is the root of the issue. Fortunately, some professionals (and educational institutes) manage to break free from the shackles of their misguided education but many sadly don’t. Until we can attack the root, my primary hope is that every family beginning their journey with an autistic child knows or finds an Ariane to help guide them. If they’re lucky, they may even find THE Ariane!

  34. Lifted from “Study, Love, Actions of justice”, by Clarissa Kripke, 5th April 2013 (http://www.autismacceptancemonth.com/study-love-acts-of-justice/).

    “The most important thing we learned was how to identify helpful people. It isn’t training that makes someone good. It is a personal characteristic—the ability to see my son for who he is instead of who he is expected to be. My son has to interview a person for the connection to become apparent. His interviews are wordless.”

  35. Sharing now in hopes to get the attention of faith leaders whom are some of the first people that are contacted when diagnosis occurs…. Lets hope they read and pass this along!

  36. Pingback: What I Wish I'd Been Made Aware of When My Daughter Was Diagnosed With Autism | Dyslexia, Dyspraxia, ADD, ADHD, LD, and Autism Education Tools and Info | Scoop.it

  37. Thank you very much for including me in the company of such excellent authors. And thank you for a message that will help the world accept out family more.


    • (((Lori))) I have loved your blog from the first moment I found it. The wonderful images you make, coupled with the beautiful words you write… I always feel happy when I see you’ve published a new post!

  38. Good for you for being the person you wish you had at the beginning of your Autism journey, I wish somebody had told my parents to set high expectations for me when I was diagnosed with Cerebral Palsy.

  39. Someone said: “Eyes see only light, ears hear only sound, but a listening heart perceives meaning.” “Our eyes see, but only our heart looks through things to their meaning. Our nose registers scents, but only our heart will track like a hound its ethereal quarry. Our tongue tastes, but only a heart can feast. Skin touches skin, but being in touch is a matter of heart. Our ears hear, but only a listening heart understands.” (David Steindl-Rast, Benedictine monk, A Listening Heart).

    It strikes me that the community represented on this comments-thread and around the topic which Ariane has so well articulated, is working through a listening heart.

    Carl Rogers of person-centred psychology and therapy renown, emphasised empathy and what could be achieved through practice of it, where again listening to and affirming the other is key. It again strikes me that this topic and our comment stream is a declaration and documentation of what can be so achieved, for and around our autistically developing children.

  40. Pingback: What I Wish I'd Been Made Aware of When My Daughter Was Diagnosed With Autism | Social Skills & Autism | Scoop.it

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  42. Pingback: What I Wish I'd Been Made Aware of When My Daughter Was Diagnosed With Autism | Young children with special needs | Scoop.it

  43. #5 really made me think hard about how I describe my experiences and my sons… in fact I wrote about it just 4 days ago http://rebeccaweston.wordpress.com/2013/04/05/you-made-my-special-world-our-special-world/ what you said made me really think about what it is that I mean by “my special world” and perhaps, as you have stated, its the wording that conveys the wrong impression to those with little or no experience of ASD. I do NOT mean I literally inhabit a different world to others but that my experiences and interactions with the same world as others is unique to me, I cannot even say that its the same as other people with ASD, as the word spectrum denotes we all are unique individuals on the spectrum! What I mean is that my sons interaction with the world we all inhabit is in many ways similar to mine so I no-longer feel alone and I truly celebrate this! Sometimes I really feel the english language falls short of providing me with the correct terminology for describe how I experience the world we live in and do apologise to those that struggle with the misconceptions of those that say “They are in their own little world,” without understanding ASD and I most certainly do not feel imprisoned, another quotation you pointed out “they are imprisoned behind their autism” and personally find this statement particually distressing. After years of conditioning to be the same as others I am trying to accept myself and learn to again enjoy, without judgement, interacting and experiencing the world as I did as a child, the way I have allowed my son to as he has grown up! You are right, it is one world, but I certainly applaud those who are trying to explain and enjoy their unique experience of it!

  44. A wonderful post, Ariane. I’ve already posted two comments above, so I’ll just say that I really think this needs to be known! Will tweet, and reference!

    😉 tagAught

  45. This, by far, is one of the best posts ever for anyone who has a newly diagnosed child. When my son was diagnosed at 8 yrs old, the first thing i did was google about autism. I quickly realized how so much about autism is so negative. Not even once, did I think anything negative about my son. So, second thing was, get to know Autistic adults and learn from them. I then realized, I too am on the spectrum, and now I’m looking into seeing about a proper diagnosis. Not sure if you’ve seen any of my blog posts yet, but I can’t say enough how important it is to ignore the media’s propaganda of what they “think” autism is and get to know all the awesome autistic individuals out there! Thank you so much for your words, and btw, your daughter is a sweet angel ❤

  46. Hi I tried to find your blog, but it took me to a page that says, “freakparent.wordpress.com does not exist.” Do you have a link?

    I love hearing from parents like yourself whose experience was so different than mine from the onset, though I admit, I always feel a little sad at how long it took me to get where you were right from the beginning!

  47. Pingback: S.R. Salas | HOPE SPRINGS

  48. What a cute little girl! My son was finally diagnosed at age 8 even though honestly, school was telling me he was autistic at age 5. He was verbal, communicative and fine, how could he be autistic? Having done research over the last few years, we have finally accepted the aspergers diagnosis and are learning how to deal with his personality.

    It is so hard at times.

  49. I hate it when you tell people that your kid is non verbal and they assume that he is mute. He may not have all the words in the world but he is not quite! Also I hate when people ask if he has some super power like some of the kids have of counting to the last of time or know every person who ever played on the Red Sox. Mine doesn’t do that. But he can make me smile and laugh when I am trying to get to do something and he suddenly becomes “more autistic “. And starts to look all over the place but not at the thing he doesn’t want to do. I tell him to stop the act, he laughs then smiles and I may get my way. The wheels are turning in there I know that and my job is to help him get them moving in the right direction . Super mom of 3boys 1with autism, 2with regular brains, and on the side labor and delivery RN at a major medical center ! Yes I am super mom, I will not tie on my cape and go. See you in big blue sky!

  50. Pingback: So you THINK you know autism…but you have no idea! | Opposite Ends of the Spectrum

  51. Pingback: Resources | Humming the Spectrum

  52. As an educator of children with autism I appreciated your article. I couldn’t agree more with the thoughts you shared.

  53. Thank you…
    While I do not directly have someone in my life with autism, I have family members with mental differences. I am not saying illness and i am not comparing autism to mental difference. But, society needs a shift in view…we are all human, no matter how we differ…physically, mentally, intellectually, etc/enter how you vs someone else can differ…

  54. Reblogged this on Opposite Ends of the Spectrum and commented:
    As I have been doing a freelance job for a family friend on top of my normal duties, I have been pulling 18+ hr days and had little time for blogging. So I thought Id reblog some of my favorites…
    This is an older post, but is one of my go to posts when I see those familiar posts from a parent “my child was just diagnosed…I’m lost, scared, heartbroken, where do I begin?” I don’t know if any of them actually click on the link and read…but I hope that somewhere at least one has, and has opened their mind to it and to their child, and the endless possibilities.

  55. Reblogged this on Swan Mothers and commented:
    A great list by Ariane Zurcher that describes what I wish I’d known. My journey to discovering these truths is in the Swan Mothrers book.

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  62. Pingback: ‘Embrace Autism as a Vital Difference’: A Recap of our Embracing Autism Discussion | Inner West Mums Sydney

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  65. Pingback: Re-thinking Autism, One Day at a Time | Parents

  66. Pingback: 'Embrace Autism as a Vital Difference': A Recap of our Embracing Autism Discussion | IWM

  67. Christine Shirley

    Brilliant blog, thank you. I will be checking out suggested resources.

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