*This was what my wonderful husband, Richard, wrote as a comment on my post the other day. I asked him if I could make it a post all on its own. He gave me permission…
“Pain is inevitable, suffering is optional.”
There are plenty of difficulties in life. Parenting is hard, but “childering” is harder. Parents usually have some experience in navigating the complex social expectations of the world. Children must gain that experience with each passing day, hopefully with the guidance, support and unconditional love of parents who put their children’s needs ahead of their own.
But there are a lot of parents who aren’t like that. Mine for example. I was taught from birth that my obedience and subservience were more important than my own needs and desires, or personal considerations. When I didn’t do what I was told to do, or didn’t do it fast enough with a “good attitude” I was yelled at. Punished. Spanked. Slapped in the face. Called awful names. Verbally abused. Degraded. Humiliated. And that happened nearly every day of my life until I left home at the age of eighteen.
My parents constantly reminded me how difficult I was to cope with. How hard I made life for them. If I would only try harder, work harder, move faster, then their lives would be so much better. Their lives.
Me? I didn’t really matter.
I waited a long time before becoming a parent. For years I swore I would never have children, perhaps because I was afraid I might behave like my own parents. And no child deserved that. When I met Ariane, something shifted monumentally in me, and I was suddenly eager to be a dad. I was 40 years old. Maybe I was finally emotionally mature enough to handle the enormous responsibility of parenting. I was ready to put someone else’s needs ahead of my own. Because for me, that’s what parenting is about. Service. My children don’t exist to fulfill my expectations, or make me happy. They exist in order to experience life and fulfill their destinies.
It is indeed hard to be a parent. I empathize and sympathize with all the parents who feel overwhelmed, who don’t have the resources or support to cope well with these tremendous responsibilities. I know life is hard for you. But trust me, no matter how hard you think you have it, your children have it harder. They sense your frustration, your discontent, your fear and panic, your anger and rage, your sadness and depression and hopelessness.
And quite likely, they feel themselves to be responsible. Maybe they are even told they are responsible. They feel guilt and shame. They try harder to make you happy. To not be so upset with them. Because they have learned–deep, deep inside–that they are “the problem.”
I’m talking about all children here, not just autistic children. For autistic children, multiply that angst level by a thousand. If you are autistic, you live in a world where so many people are telling you that you are broken, that you need to be fixed, that you need to be trained, conditioned to “act normal.” If you like to spin around over and over, or bounce, or rock back and forth, you are given the message, sometimes spoken, sometimes not, that this is “wrong.” And therefore, by extension, there is “something wrong with you.”
If you are non-speaking, or have difficulty with speaking, or with other physical issues, life is even harder, because you are being told that there is something REALLY “wrong” with you. Meanwhile, you’re trying to live in a world of “talkers” that constantly underestimate your intelligence and capabilities, who treat you like babies, who give you dirty looks, or tease you, or bully you.
You are put to “work” when you’re only two or three years old, or as soon as it has been decided that something is “wrong” with you. Early Intervention is required, in order that you be “fixed” and/or “rescued.” This is not optional for you. It is mandatory. You have no choice in the matter. And if you can’t speak, you can’t even complain. So it begins. The endless conditioning. The continuous demand to stop being who you are and “fit in.”
And nearly the entire world of medicine and science and education is conspiring to maintain the status quo of the deficit model. Autism isn’t defined by all its wondrous capabilities, but by what is seen as lacking. Autism Speaks continuously fuels the bonfire of “wrongness” with every dollar they spend.
And it has to stop. It is wrong. It is life-killing and soul-killing. And if you, as a parent, can’t see that this is the reality your children are living with every second of every day, you need to open your eyes and ears and heart.
I so wish it hadn’t taken me so long to wake up. I so wish that I could erase all the damage I did to Emma, like subjecting her to the torture of ABA when she was only two years old. But I can’t change the past. I can’t take it back. What I can do, is speak the truth of what I’ve learned to whomever is willing to listen.
Such an important and refreshing viewpoint from one who has lived the torture of being a child in a household where only parents and their feelings count. Thank you, Richard, well said (written)!
I was really lucky because I always knew that my father loved me, not so my mother, who seemed never to have wanted to be a mother. We girls were a hindrance to whatever she wanted to do, she wanted to become, alas. In my opinion the parents who opt out of loving their children and letting them be who they are, not who the parents want them to be, lose in the end.
In your family with Ariane, Nic and Emma, you seem to be good parents, and in the end you will be able to look back and say: “I let my children be to their full potential, each of them, however different their abilities and goals, what they wanted to be, and I love them the way they are, different, intelligent, loveable.”
With love from Granma Paula
good morning dear richard. em will back me on this im sure. we hold no ill will to our stalwart parents. bygone parents had leeches put on, we got aba. intention is impossible to hide. we see you. we love you. awaking 2 b
How very sweet and kind of you Barb. ❤
From a Mom who harbors that same regret, a thousand thanks. ❤
I love you Richard.
I love you too Ibby. Truly. Wholly.
I’m so glad this is it’s own post. I was completely moved by Richard’s words and hoped that they would not get lost in the comments. Thank you.
Most autist people are still suffering with ABA or going through dealing with the school system like us. Documentaries would be great too. I would do anything I can to help other people know the truth too.
Great job on today’s post. Thanks.
Thank you for the knowledge you are sharing. Many parents and kids will benefit.
Reblogged this on Opposite Ends of the Spectrum and commented:
“And it has to stop. It is wrong. It is life-killing and soul-killing. And if you, as a parent, can’t see that this is the reality your children are living with every second of every day, you need to open your eyes and ears and heart.”
Thanks, Richard. Many of us, NT/autistic/ have scars left by our parents. What helps them heal fastest is the parents themselves (otherwise, we take our healing into our own hands). I could say that I was hurt “worse”, or (more obviously) by my father, and not “at all” (less obviously) by my mother. As I got older, I could more clearly see the greater/deeper damage inflicted by a narcissistic mother. I came to peace with what happened with dad (it took work, for sure) because I saw CHANGE in him. I still don’t trust and have pretty much cut 95% of ties with my mother, because there is no change, no responsibility, NOTHING.
The simple fact that you SEE, that you CHANGED, that you continue to strive makes ALL the difference in the world, and adds loving healing to those bits that hurt until they all but disappear.
Many many hugs to you all.
I will be eternally grateful to my children for helping me to change for the better one day at a time. I love what a friend wrote in a comment on a share of this post:
“Thanks…especially to Emma, for raising you as parents, so nicely.”
I think this is so beautiful, and so touching. As a parent of a child on the spectrum, I am so moved, and my eyes are opened. I need to listen more. I wonder, though. How do we find the line between giving our children the tools they need and changing who they will be?
Great question. I am in a constant state of reappraisal regarding my parenting, particularly with Emma. Now that she communicates through typing, I can ask her opinion on the issues I’m uncertain about and I’ve never found her advice anything but sound and sensible. I don’t know if your child can speak, but if he/she can, I would try to talk about the issue you’re struggling with and the ask for your child’s thoughts on the matter.
This morning, I asked Emma a number of questions regarding how my interactions with her might be improved (from my side, not hers), especially when we go on outings. Here is an edited excerpt:
Richard: You’ve been writing about how important play is and how much fun making faces is, so I’m trying to concentrate on just being more playful. Also, when we had the dinner party later you said the conversation was interesting so I’d love to hear your thoughts on that.
Emma: Other people talking is less stressful and I don’t feel I have to worry about translating my thoughts into words that people can understand.
R: Are there topics that you would be interested in hearing me talk about when we are out together?
E: Topics that excite are usually of interest.
R: What stuff do you find exciting?
E: Having you play and being silly are the most fun, topics for learning depend and change. Today I’d like to know about other kinds of people who live in other parts of the world like African tribes.
R: The Natural History museum is a great place for that, would you like me to talk about some of the things we are seeing when we are there?
A: But I’m thinking you might also like to know about things that are going on right now. Maybe it would be great for us as a family to discuss current events?
R: You hear me talking all the time about consciousness, science or the other interests that I’m passionate about, do you share interest in any of them?
E: Only now and then, sometimes it gets too dense and I need background info and the timer. (Ha!)
R: Is there one topic that I’m interested in that we share, that you are also interested in?
E: All are but try to keep your questions about what is most important.
R: What does that mean?
E: Getting lost in details takes energy that depletes. The details told are also exhausting to hear.
R: I’m only now beginning to ask you open-ended questions and so what I’ve been doing is asking factual questions so that we practice working together. I don’t want to bore you, but I’m not at the point where I can ask you for your general thoughts on a topic.
E: You can teach and ask main points.
really great post. so insightful. thank you.
Thanks Stephen, nice to “see” you. I think I was at the deli with Emma when I ran into you last 🙂
Reblogged this on Exceptional Delaware and commented:
When I started my own blog, I didn’t know a lot about autism. I still don’t. My first experience with it was the series finale of St. Elsewhere. The series ends with an autistic child, who we have seen on the show before, but with a different character as his father. His father is not a doctor in this reality, but a construction worker. The autistic boy is looking at a snow globe of a hospital called St. Elsewhere. We are left with the impression that the autistic boy imagined the entire series in his mind.
I happened upon this post through Twitter, where I have been trying to educate myself with all disabilities. This post rang very true with me, as I have my own struggles in dealing with a child with Tourette’s Syndrome, ADHD, OCD, Sensory Processing and more. God bless this father for saying the words we all should be saying.
My only knowledge of autism prior to Emma’s diagnosis was Rainman and documentary images of kids banging their heads on the floor. Hopefully, if we can wipe out Autism Speaks disinformation blitz, the true stories of autism will start reading the mainstream media. I wish you all the best in your parenting. Love and acceptance matter most.Thanks so much for sharing 🙂
I think it is natural for all kids to feel at fault for how their parents may fail them as you have heard of things like love. Seen other people’s parents in action. It does not occur to you, or at least when I was still a child not once did it occur to me that it wasn’t my fault.
I kept a journal from the time I was 13. Every year I made resolutions, the broader goal I hoped they would serve and re-evaluated the last ones. For the years I was at home I seemed to think if I could become more perfect there would be no reason not to love me.
I was an adult before a relative told me my parents were so selfish they never should have had children. Both and explanation and a questioning of my existence but it took a full decade before I knew for sure that unconditional love was not something made up to sell books and videos.
You do get a message if yours has been an abusive childhood, to compound the issue that you too will inevitably be abusive. In therapy no less.
I am grateful that due to my age the more than full time work at getting “better” today’s children are put through just didn’t happen. There was speech therapy as a fate you would not escape once you got to school anyway and an at home program that was relatively painless in consisting mainly of throwing a ball and jumping rope and usually administered by my brothers who being much older if it was the brother who was a rarer appearance in my universe I would have gladly done much more for.
I have witnessed what often well meaning parents do trying to help their childen and seen that at times they are victims of the way autism is marketed now.
A hundred years ago children working those hours were liberated from such fates. The 40 hour boring as heck, inhumane, dehumanizing therapies are the coal mines of today.
I see people claim their children enjoyed the therapy that freed them from their “echolalia” . I have never met a child who said things that had no meaning. If the meaning wasn’t immediately apparent should it be up to the kid trying to communicate to lose that tool and conform?
I try when I see situations like that to be measured and calm because the person really cannot see the content or that the child is dong all the things they hope for because they are blinded for the desire for them to be like other children.
No child – disabled or not – is like their peers. What a loss of a precious gift. To be a parent is to have such a marvel to learn from and teach but not to train. Not to blame.
That is is a stressful and hard thing at times having has to step into the role but never being blessed with a child I do not doubt but that people lose sight of the miracle because of what society says is necessary is infuriating.
I am so happy that you, Richard, took the plunge and helped create the family you have.
It is a hard thing, but a brave and necessary thing to admit the things we feared, our deepest pains, the things we had to rethink along the way but to do so helps those in similar situatons most of whom you will never know you helped.
It is not by luck you have the family you have but by courage. It is odd that if you were a daredevil people would applaud and pay you for it but the journey you took and are taking is so much harder on every level.
Still people do applaud if only by the clacking of keys.
Reblogged this on bunnyhopscotch and commented:
Dear friends and followers of my blog, this is too important not to reblog here. Please read this with open minds and hearts. No, I don’t want to be ‘cured,’ no, I don’t want my parents to keep me in a golden cage, and yes, it hurts, it devastates and shatters, far more than you may ever know or wish to know, if you tell me, “Do you think I ever wanted a child like you?”
Thank you, Richard, for these powerful, healing words of a parent. Thank you, Emma, and Ariane too, for sharing your lives with so many of us – across neurological make ups – who need and want healing and empowerment to be.
What a wonderful comment Gareeth. “It does not occur to you, or at least when I was still a child not once did it occur to me that it wasn’t my fault.”
Truer words never spoken. No child who is abused, autistic or not, does NOT intuitively reach the same conclusion: “They” are the problem. I’m now 58 years old and am still struggling with my internalized shame, guilt, and self-hatred. I found a great book that’s been helping me called “You are not your brain.” It teaches mindfulness meditation techniques in order to make use of the brain’s neuroplasticity to “rewire” itself. Emma likes it too.
I also think Emma’s mind is healing me. Seriously. When I am physically with her, or thinking about her, I get so many amazing insights, almost all about love, compassion, joy and wonder.
Thanks for sharing, Bunny 🙂
I wouldn’t doubt that for a second. I am glad you are able to have those insights as it seems some seal themselves off from the possibility entirely.
I had to confront the bulk of that a long time ago as i started to have serious issues with depression at 18. It’s not easy. There are times too when in experiencing something you realize what was missing.
There were people in my life who filled the gaps or tried to even if at first I found them to be the ones who were strange and went to such extremes as actually hiding from people when notions that I was indeed lovable were so new as to be unbearable.
I am just happy you were able to keep yourself open to these possibilities as not everyone does. Some manage to seal off the pain so tightly that when it rocks the very foundations of their life they cannot even work out why. Denial being easier in the short run I guess.
If I had had a choice about confronting things I probably would not have either though.
Richard’s comment was so powerful and touching that when I read it the other day, I immediately shared it on my FB page (giving him credit, of course) along with your post. Thank you, Richard, for your words, and thank you all for letting us into your lives in order to let the world know more about autism…to better understand it, celebrate it, and not fear it.
Love to you Lily 🙂
So beautifully written, thank you, I will share this.
I remember the moment I was “put to work” fixing my “wrongness” in order to allay the fears of adults (in this case, my mother, mostly). I was eleven months old and had just figured out that adults’ mouth sounds could be decoded as intelligible speech. I would spend the next 30 years trying desperately to hide what was “wrong” with me (I didn’t know it was autism till I was 27), until it almost killed me.
Thank you for this, Richard. It means more to me than I can word.
Thanks Dani 🙂
That was beautiful. If only all parents were so loving, and so humble, in the way they act towards their children.
Thanks Ozquoll 🙂
These ones alwAys make me question VAC and abs therapy. But I think for now it’s the right thing. He seems happy there. And there has been improvements. . It’s not an excuse it the facts.
He can be given one on one time which I can not do at home
Sent from my iPhone
Best to you Natalie 🙂
Hi Richard. Really interesting post, I am with you all the way but the ABA/abuse idea puzzled me. My son was diagnosed a year ago and we plunged into ABA/VB. I have found it loving, supportive and I have seen life open up for my son. He loves his tutors and sessions, he learns through play mainly and is really starting to speak, starting mainstream school and we have tools to physically manage him rather than clumsily manhandle him. He is only getting bigger and stronger. It’s been pretty much common sense parenting adapted to specifically help our son learn and engage. I’m always up for learning and doing things differently too and of course I see wisdom in your words but you seem pretty angry with ABA? I would be really interested in hearing more about your experiences with ABA and what has lead you to feel so strongly that it is not in line with loving, conscious parenting.
I modify all my sons behaviours – I have two other sons not on the spectrum and try to teach them all skills to help them in the world that I too have been taught. Spiritual, mental and physical. They of course teach me many valuable lessons too. Maybe one day they will all take issue with my imperfect parenting, I would be surprised if they don’t but if my son with autism communicates that with me – job done. It’s not about me it’s about empowering him with love, choice and opportunity. It’s about literally giving him a voice.
I have to agree with Kat on this. My previous comment that I need to listen more to my son still holds true. But ABA can be such a game changer in a positive way. I also work with hundreds of kids on the spectrum and so many of my patients have made such incredible positive strides with such loving and bright ABA providers. It makes me think you must have had a horrible experience that is not a good example of the therapy. And it doesn’t necessarily work for everyone (though that has been an exception to the rule in my experience), but it is absolutely not abusive. At its core is reward/reinforcement for learning new skills – using what is inherently reinforcing, whatever that might be for each individual. But I have seen a lot of bad ABA, and I also know that I am so lucky to live and work in a state where ABA has been around long enough to have many terrific professionals available. That wasn’t the case when I started a dozen years ago.
ABA is BF Skinner behavioralism, which is essentially like training seals. Emma has written on how harmful it was for her, and I have read countless autistic adults describe it the same way–as torture. You write that you have found it loving and supportive. Does your son concur? Can he speak for himself or is he non-speaking? I’ve never heard an autistic person describe ABA as loving and supportive, but maybe he feels that it is, so I’d love to hear his opinion.
My opinion is that even the milder forms of ABA are coercive and harmful.
I recently went with Emma to a school where she was having an RPM session with one of the teachers. During a break we went to the sensory gym. There was an autistic young man in the room happily listening to music on his iPhone standing next to Emma while she swung in a hammock. He was accompanied by his ABA “therapist”. At a certain point, the therapist decided it was time to leave and told the boy to go. The boy, who had very limited speech abilities dared to say “no” to him. The therapist got right in his face and shouted, “You may not say no!”
The boy became very upset and couldn’t speak. The therapist then shouted, “Use your words!” and demanded continuous eye contact. Then he dragged the boy out of the room screaming. Initially, when the man told the boy it was time to leave, he never gave him any transition time, or any reason why it was necessary to leave immediately. Likewise, my parents never gave me any reason why I had to obey their every whim other than: “Because I said so!”
ABA behavioral mod training is all about COMPLIANCE. It is a master/slave relationship. You are rewarded when you comply, and non-compliance is punished (even though some ABA-lite systems insist there is no negative reinforcement used, in my experience that is bullshit).
You go on to say that you “modify all your son’s behaviors.” So did my parents. I suppose it can be said that all parenting involves a degree of socialized training. We teach “the rules:” “Don’t eat with your hands” “Don’t pick your nose” etc. etc. However, I would wager that you don’t sit down across from your non-autistic children for hours at a time, demanding eye-contact (that is painful for an autistic person to maintain, and for most non-autistic people too) and giving them M&Ms when they demonstrate “correct” behaviors.
I believe that deliberate behavioralism in any form (“I’m going to change your behavior by breaking your spirit and training you to conform to my will”) is soul-crushing. I experienced this firsthand as a non-autistic child. It did not “work” on me. I detest authority and am extremely confrontational when anyone tells me what to do. However, I do not pick my nose in public when anyone is watching, so maybe that aspect was successful.
Anyway, that’s my experience as a non-autistic person who experienced lifelong parental abuse. I’d love to hear some of our autistic friends respond to your comment, as they have experienced ABA firsthand.
Richard, I think your horrible experiences in childhood and the poor quality ABA you have witnessed (and Emma apparently received) has left you extremely sensitive to an aspect of ABA that can be done well or poorly. The ABA therapist you described is a bitch. She’s not representative of good ABA. What would you do in her situation to get the child back to class after a break? I would hazard a guess that the child often refuses to come back from break. I would teach the child to request “One more minute” or something similar. I would schedule something rewarding in for the next activity to proactively motivate the child to come back to the room. I would use the child’s special area of interest to engage them in learning skills. That is good ABA.
Would you let the child run the situation all the time? If I did that with my son, he’d be on computer games 20 hours a day, eat potato chips, candy, and ice cream. I am not exaggerating in the least. And he is verbal. I have to structure his life and motivate him to do the things he needs to do. Things he does not want to do. I explain myself, and he understands, so I’m lucky. But honestly it doesn’t do much toward getting him to do those things. Do I want him to comply? Yes. Don’t fool yourself that you never need Emma to comply. First of all, Emma is an uncommonly bright and articulate child, and you are so fortunate that you have the beauty of being able to both understand her and agree with her. I’m not saying you aren’t both amazing parents, but she is astounding. She is not every kid. And you can no more call me abusive for using behavioral strategies with my child than I can call you neglectful for letting Emma make decisions or the child in the store a “brat” because he is having a tantrum. Was BF Skinner a bit evil? That’s definitely a real point. But that does not make the understanding of motivation an evil tool. You use it when you hug your son for doing a good job. Because that matters to him and thus motivates him.
I think it is worth mentioning again that not all applications of ABA are equal, and I see incredible variability depending upon location. Massachusetts, NJ, and California, at least near the cities, tend to have better ABA than even out toward Western MA or perfectly well-populated cities in Ohio.
Thanks to you both for coming back to me on this. I am genuinely interested and will ponder all that you say. My kids all grow up in a very imperfect family, we have made countless mistakes and they weigh heavy but we are there by their side with all the love we have to give. I don’t parent how I would hope to all the time. I have three boys. They require a firm loving hand. I really believe that. We are softer with our son who has autism and got into a bit of a mess with his behaviours. He too will happily play on iPads, watch tv or eat rubbish and will physically lash out in absolute fury when he doesn’t get his own way. We were so shocked and out of our depth that our aba programme has really and truly felt like a godsend. I really hear you though on what you are saying and how he might feel about it in the future but I can only go with today and today my son was so happy to see his therapist. I want him to learn through play and love too, it is a fine balance. I cannot allow his future to be a big man needing restraints and someone with him constantly. I pray we can give him the tools to cope with a beautiful but unforgiving world. My husband grew up in the war in Beirut with no parents and was mistreated too, his was a horrifying ordeal. He survived and although he has views and actions that don’t sit we’ll with me and my middle class English anxt at all (and are magnified on this journey) he really is sometimes right, sometimes not. It definitely does not feel easy at times for a myriad of reasons, not least that i question and analyse everything we do. What i do know is that we love our son whole heartedly and we do our best.
You and your family are spreading a good message. I take from you to try not to come from fear. I love and take from you humility, it is not about us, our journey but his and to be as mindful as possible of his experiences. He is not a problem to solve.
Thanks for sharing and keeping an open mind Kat. All the best to you and your family.
As a child, I thought my parents were no different than others. It’s only later in life that I have come to realise what exceptional parents they were.
We were encouraged to explore, both physically and intellectually. We were encouraged to question and not take things for granted or at face value. We were allowed to be independent from an early age, but were reminded that independence was not without responsibilities. Nothing was forced on us, but were were supported in whatever endeavours we chose. We were encouraged to develop at out own pace and in our own ways. Although they weren’t particularly demonstrative, we knew we were loved unconditionally.
It’s saddening to realise many children grow up in an environment so different the the one I experienced. Damaged children too often grow into damaged adults, creating a vicious circle of harmful parenting.
I am extremely grateful for the upbringing I received from my parents. I realise that I brought up my own children in much the same way although I tried to be more demonstrative in my affection. And now I am witnessing very similar upbringing in my grandchildren.
Thanks Barry, I love these happy childhood stories! That’s the way it ought to be. I’m glad you’re passing it on. 🙂
I wish I knew how to say “yes, you’re right, Richard” better. I’m a handful of years younger, and it sounds like I endures something similar as to measurable behavior on the part of my parents – and something closer to ‘screams, slaps, and love’ as well.
It wasn’t just needing plastic surgery to ‘fix’ my right ear. (I have Goldenhar syndrome; I was born without it). It was also erasing other differences. I was told about being born left-handed, and being ‘changed over’. I suspect that was the tip of the iceberg; for all I know, I may have had a LOT of ‘autistic’ behaviors beaten out of me.
I feel enraged whenever I read about ‘behavior modification’, regardless of its current label. I’m more or less unable to trust anyone any more…
I’m glad you two are not doing that. I wish I knew how to properly applaud you-all.
Hey Dennis, thanks so much for sharing your pain regarding those who tried so hard to “fix” you. I just got a major dose of “OMG was that really me?” when I viewed an old video made with Ariane, me and Emma in the office of Dr. Stanley Greenspan. Greenspan is the creator of Floortime/DIR therapy and he was coaching us on how to “bring Emma out of her own little world.” Listening to the bullshit the came out of his mouth and the bullshit that came out of mine, I felt like a turtle with a too-small shell: there just wasn’t enough room for me to retreat far enough from the sheer awfulness that I was witnessing. Meanwhile, Emma (four years old at the time) was blissfully happy while we struggled like crazy to “get more speech out of her”. It was just so painful to watch. Yet another example of how horrendous everyone’s life becomes once you buy into the advice of non-autistic “experts” on autism.
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I’m with Barry, I thought my parents were no different than others. But growing up and being a parent myself has made me realize how amazing they were at being parents.
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