When Emma was just two years old she was diagnosed with Pervasive Developmental Disorder- Not Otherwise Specified or PDD-NOS, which is the “it-may-be-autism-but-we-can’t-be-sure-maybe-she’s-just-a-bit-different-so-let’s-just-wait-and-see-what-happens-before-we-say-it’s-autism” diagnosis. Two years later, Emma was diagnosed with autism. But in 2004, when Emma was given her PDD-NOS diagnosis the neuroscientists, Kamila and Henry Markram, had not come up with their Intense World Theory for Autism. The idea that Autistics have a brain that is far more sensitive to all stimuli than non autistic brains, was not something people were talking about.
Emma has since told me that she can “hear” people. When I asked her what she meant by that, she wrote that she could sense people’s emotions and inner turmoil. She could hear their moods. I have been told and read similar things from other Autistic people. This is something Barb Rentenbach also talks about in her must read, book, I might be you. Now add to the intense sensory sensitivities that ebb and increase suddenly and without warning, lights, noise, touch, smells, tastes, feelings and you will begin to understand how overwhelming and unpredictable life can be. Or, as Emma wrote last week, “On Monday a noise is pleasant, but on Tuesday the same noise is not pleasing to me.”
Yesterday, Emma wrote about what happens when she bites herself and the things others can do to help, as well as the things people do that make it worse and it made me think about my reactions to seeing my daughter hurt herself. I can go through a fairly quick series of feelings. I might feel scared, oh, no! She’s hurting herself, this is terrible, I have to make her stop! and concern mixed with confusion, what can I do to make her stop? But I also may feel other things too, like a desire to control the situation, annoyance and embarrassment that she is screaming in a public place, stress and overwhelm from the tears and her obvious upset, feelings of inadequacy that I should be able to help her more than I am, wondering whether I am a bad parent, believing that if I were a “good” parent, she wouldn’t do these things. Questioning my own reactions, worrying that if I don’t force her to stop, people will harshly judge me or criticize me or believe I don’t care that she’s hurting herself. Or maybe the situation is also stressful for me and I’m also in overwhelm. And on it goes. But as Emma wrote, “I know it upsets people, but it’s not about them, it’s about not being able to describe massive sensations that feel too much to tolerate.” So if I don’t spend the time to think about and become aware of what I’m feeling as I witness her, I will react in ways that actually exacerbate her overwhelm.
I am once again reminded of my car ride with my beautiful, friend Ibby while visiting her in Chicago this past December. I wrote about that ride ‘here.’ What Ibby did was such a perfect example of what I needed, though I did not realize I needed it and could not have asked for it, had I been asked – what do you need? A calm, loving voice, carefully telling me what was going to happen next and why, a calm loving voice coming from someone who genuinely loves me, who I know has no agenda, was not trying to control me, whose words and concern were completely for me, with no other motivation than to truly be there for me… this was what Ibby gave me during that car ride. Ibby did not try to take away my feelings, she didn’t try to control them, she wasn’t judging them, she was calm, patient, accepting and above all, incredibly kind and loving. And, by the way, Ibby could not stop the noise the wind shield wipers made, it was not something that was within her control, it was snowing hard, she could not drive without them, yet even so, what she did instead made all the difference in the world.
It seems so simple, it seems so obvious, but it is actually quite rare to have someone do this for another. So I will end this by encouraging all who want to know what they can do to help someone who is deeply distressed, examine your feelings, really look at them and make sure you understand what you are feeling before you attempt to help another, because if you’re becoming upset with someone else’s upset, anything you do will cause the other person to only become more upset. Until I can get to a place of having “helpful thoughts of calming kindness. Reassuring words of understanding, instead of irritation and impatience” my response will add to the other person’s overwhelm.
*I just have to add here, this is something I find very difficult to actualize. It is a work in progress, but it is vitally important.
I have a brother and a sister. My sister is 11 months older than me and we know every button to press to send each other into a rage. We are both rapidly approaching 50 so we have mellowed over the years and rarely disagree or fight anymore. However I know I let things that she does that bug me go because I don’t want to have that fight. I would say she never really listens to what I say and projects her feelings onto me.
Our brother is 14 years younger than me and we never fight. He looks at siblings that fight with total bewilderment. We do try to explain that because he was the baby we both spoiled him and let him get away with everything.
He is getting married this summer to a lovely Swedish lady. We are all going to Italy for the ceremony. I recently felt I was getting side lined from the wedding. Others were involved in the planning and I was finding everything out after the fact. I was also feeling a little raw emotionally because our dad was in hospital so I kept complaining to my husband usually in floods of tears. Then I thought why don’t I talk to my brother and tell him how I’m feeling. So I did. He listened to every word I said. Acknowledged what I was feeling and never tried to tell me I shouldn’t have those feelings. He then explained what he was doing and why. There were a few tears on my side at the beginning of the conversation but no shouting by either of us and within 10 minutes I was totally fine with everything.
So I think I understand a little of what you mean and what Emma is is eloquently trying to explain. Some one just acknowledging your feelings and not trying to negate them makes all the difference. I would never have thought my little brother could be so sensitive.
As always, thank you for sharing, Ariane and Emma. This has made me rethink some of my son’s actions. When my son starts seeking intense input to his chin, it can become obsessive. Sometimes, too, he will hit himself repeatedly on the head. I don’t know how to help in these situations. I always ask him what’s wrong, but of course, he can’t tell me. Going forward, I will try to simply be “there” with him, rather than show alarm, which possibly, as you point out, only exacerbates the situation. Thank you, as always, for the insight and the sound advice. xx
Overwhelm is equally struggle to negotiate. Autistic sensitivity to the actuality of an other person, is sensitivity to just how that other is negotiating life. How another is insisting on negotiating so as to have their life, can include what will not serve an autistic you. Overwhelm can be not being able to get through or around an other person’s insistence; insistence about the fundamentals of being. Below the radar of consciousness and intellect and culture, autistic persons get overwhelmed by what the other does to secure their own being. Autistic self-advocacy intends resourcing autistic persons in this field. Replacing overwhelm with active autistic (re)negotiation. Within the body of any and all overwhelms, is the materielle for autistic self-realisation.
Can I be calm when someone I love isn’t? When they hurt themselves? It’s not easy to do.
In situations where someone has been injured, I can be very calm at times, do what needs to be done with first aid, or get them off to the hospital without freaking out. When someone is emotionally upset, it’s much more difficult for me not to engage with those feelings and amplify them with my own anger, fear or frustration. When Emma bites herself when she’s overwhelmed, or does something similarly self-injurious, my immediate reaction is to say or want to say (or shout), “Emma! Don’t do that!”
When Ariane first started sharing stories with me from autistic people, describing how these actions feel necessary and the last thing they want to do is be prevented from doing it, or shamed for doing it, my basic reaction was, “I can’t do this.” I can’t just stand by and see my own daughter hurt herself and do nothing about it. This is NOT okay. She needs to change this behavior. She needs to STOP doing it. And that’s what I’m going to do: “help” her to stop doing it!
I think these thoughts and actions are a natural and logical response for any parent that loves their children. However, that doesn’t make them correct. It is totally counterintuitive for me to just stand there and not try and prevent Emma from biting herself. Even today, knowing all I know, it is still very difficult for me to react calmly and not try and control the situation. But I am trying.
On Sunday when I took Emma to a museum she became upset and began pulling her hair when I didn’t leave soon enough. I was being very willful to take her inside in the first place. I had never seen the Queens Art museum and we were walking by it anyway so I wanted to check it out. Emma did not and told me so. I rationalized going in my telling her and myself that if we are going to homeschool (something we’d be considering) that we needed more places to visit and learn things. The bigger truth was simpler: I just wanted to check it out.
“C’mon Emma, just a few minutes.” And inside we went. There was a cool huge diorama of New York City from the 1964 World’s Fair I thought she’d like. She wasn’t very interested. When I went upstairs to check out more stuff from the fair, she began pulling her hair.
My response? I didn’t tell her to stop, or that it was NOT okay to pull her hair. I said (reasonably calmly), “I’m so sorry Emma. I didn’t realize this was so upsetting for you. Let’s get out of here right now.” Because Emma has verbal ability, I suggested, “If you can say, ‘I don’t want to do that. It’s important.’ I’ll know how stressful it is for you so we can avoid this.
She repeated that and when we went outside she also repeated a few times variations on her initial request not to go inside in the first place (duh Daddy!) and talked about pulling her hair over and over.
“I know Emma, I messed up. I’m really sorry.” I repeated that a few times too.
Admitting my shortcomings in a public forum isn’t easy. But none of this is easy. Not for autistic people, or their families and friends. But if we all keep talking about it, maybe we can better cope with this difficult issue together and do more good than harm. Hey, I’m trying.
thank you so much for sharing this story Richard! It helps so many 🙂
Thanks so much Bird, it’s good to know that my continuing mistakes can be helpful to others. Hopefully, I’m learning from them too 🙂
When Marisa first came out of surgery, they took her upstairs and were trying in vain to calm her down for the first hour or two. I was getting terribly anxious meanwhile, imagining the scene in my head…when she comes out of anastesia, she comes out SWINGING. Every. single. time. They of course, knew her history and thought they could handle it. And, of course, it upsets me terribly knowing 1) my child is incredible pain, 2) she cannot verbalize it, and 3) no one has come up with a fool proof solution for situations like this.
So, they finally call us up. Just me and Joel at first, and we had to keep hold of her hands – she was going after everyone, scratching something fierce, screaming at the top of her lungs, it was awful. Then my in laws came up, it got even worse. The anastesiologist said he couldn’t give her anything more medication wise or she might stop breathing. I am totally freaking out, and knowing that it’s making things worse.
My sister in law swiftly put her arms and my shoulders and escorted me out of the room. Hugging me tight, talking to me softly, she kept saying “If you don’t calm down, she’ll NEVER calm down. You’re her Mama, she needs you right now. You know how sensitive she is to your moods”. Which is all completely true.
I regained my composure, by this time Joel had decided to spent the nite with her. He has a soft spoken, laid back way about him that she just responds to better.
Once all the meds kicked in she fell asleep, and I bawled my eyes out all the way home. Having a child who is non-verbal with such limited communication, I describe it to people as having a newborn.
We’re three weeks out now. She’s still home from school, recovering. But she is doing remarkably well. I think she’s bored, though. Whenever she’s upset and I ask what’s wrong, all she says is “Bubba!”. (Translation, I’m bored and want my brother to come home!)
Anyhow, sorry I’ve been out of touch, as you can imagine, I’ve had my hands full. I know you’ve been thinking of us, and we’re doing as well as we can, under the circumstances.
I promise to stay in touch better!
Love, Angie & Marisa
These are really important points about what it means to be helpful. I think people have impulse control problems with wanting to demonstratively feel helpful (show that they care) which make it hard to take the advice you give to hold back unless you can avoid imposing cognitive dissonance in ways that increase how emotionally overwhelmed the person in distress is themselves. Concepts like countertransference apply here, and the presumption of decency that people feel compelled to live up to being partly about appearances. Helping professionals feel like bystanders when they work with business models and routines to serve the needs of patients and people in need of “care work,” but outside the helping professions people are often not very self-aware about what it means to try to help someone by facilitating a hand-off towards a helping professional, or “someone else” who knows the person who needs help better somehow.
Thanks for sharing Emma. “Helpful thoughts of calming kindness” is a state of being we should all strive for (I’m still a work in progress.) Beautiful!
This is so helpful! I have often felt that my daughter picks up on my thoughts and feelings, especially if I am visualizing in my mind and not thinking in words. Sometimes she will talk about what I am thinking about.
I am going to work more on “helpful thoughts of calming kindness.”
Yes, this is commonplace in our household! Noah routinely knows and then says what I am thinking or picturing. Wild! And so my calming thoughts can be helpful to him.
it took until our son was a young adult, but i finally figured this out too. He is on the autism spectrum and verbal, but is challenged by communicating feelings. We chose not to use support services/programs and have made our best effort to provide a good/comfortable learning environment and happy home. One of the many times I tried to understand if I was not picking up on something, or figure out what seemed to be the problem for our son and couldn’t, I just said. ‘Thanks for telling me how you feel.’ The resultant gradual wind down of his frustration was music to my ears/eyes. I have not figured out several triggers I could share: 1. boredom 2. nothing to look forward to 3. lack of physical exercise 4. any request when an underlying ‘issue’ is brewing (eg. a pending medical appt. or social gathering or something bothersome to our family that has happened recently – such as a noisy neighbour, incessantly barking dog, bad driver, etc.etc.) I found acknowledging the ‘issue’ and talking about it to explain it so it isn’t SO BIG on his mind helps…putting in a better balance. I also just move towards our son when he is having one of these with a hug, reassuring him that I still love him and I understand how he feels. It is a gentler way for both of us really.
Learning facts about the things that bother our inner equilibrium can be difficult, takes a while and a vast majority never will even get close to principle in the first place; as they will adjourn again and again such understanding, and in the mid process will attain newer degrees of disequilibrium. Like a self-absorbing negative spiral, changing into deeper dimensions of intricate unsolvable complicity. Because let me add, there is a main culprit in such a demeanor, one self, nailing the coffin one day at a time. The minute you give up on understanding those forces, you became a victim of them. And as a consequence of an unbalanced character also a potential subject to many undesirable outcomes. The basis is in thought, in reasoning, in elaborating better strategies; you don’t change anything by been sanguine. So go ahead and use your head.
Now let’s make a regression, back to those childish days, when colors seemed brighter, smells felt stronger and feelings grew deeper. Those were times when we first understood the meaning of words as braveness and sweetness. Those were days in which we also learned by bruises and thorns what pain was all about. Children growing to become adults that later in life will use mental schemes learned unconsciously to solve problems. Let’s see again what I mean by this last sentence, lets observe life as children. Because personally I believe children are more efficient solving problems. Not because they have more answers to choose from as adults do, but because they´re practical and open minded.
My experience with my five years old nephew is that of an uncle that has witnessed many things that had changed my perspective of adulthood and how to respond to that world around us. I´ve learned from my little one that one must be coherent, that no matter how embarrassing the situation, one must stay the course. In simple language don´t be afraid of making a fool out of yourself; don’t go around testing your “normality standard” on others. I discovered by my five years old that there is no normality to refer as a standard. So barking from a car´s window while on the traffic or making meditation poses while on the playground is allowed. Takes to understand and adapt to a cumbersome reality. Be brave and most of all be sweet, your child will always appreciate that.
Dear Ariane–I’ve been reading your blog for a long time and have never commented before, but I wanted to thank you for this–it was a real breakthrough in understanding for me. I have a daughter on the verbal end of the autism spectrum. B is incredibly eloquent, but she is often in emotional distress that she can’t explain to me, and that elicits a kind of panic on my end that I know makes things worse. I’ve spent so much of my life learning to sit with my own emotions without pushing them away, it only has just now occurred to me that to help my daughter I need to learn to sit with both hers and my own. Thank you. And thank you, Emma! Every time I read your writing I learn something new. The world needs your voice.
Maybe the ability to “hear” people’s emotions is compensation for our inability to read expressions? i can’t hear people, and sometimes wish i could. it’s a blessing, but also a curse. Emma is very sensitive. i get this from reading your blog and previous posts. it bothers her a great deal when someone hurts and she hears it and is unable to help. also, all those emotions and sensitivity to light and noise can be too intense.
i used to be terrified of noise and too much people that keep moving. it still bothers me, but now it’s under control.
dont let the ridiculous idea that you’re a bad mother enter your head. this has nothing to do with it. you cant wave a magic wand and make the noise and bright lights disappear. You’re a great mom. you’re tuned in to Emma and intensly involved in her life in a way i dont believe most parents are.
music is often soothing for people on the spectrum. also, a person suffering from noise anxiety can record the noise on tape, and then play it at home at a very low level, and then bring it up slowly. maybe that could help.
i still jump from every little noise, like a cat. some people say felines are on the spectrum. well, i had a cat that could read my mind, and i’ve heard from other cats lovers that many cats posses this magic. i find it an honor to have things in common with such a beautiful and mysterious animal.
As an autistic adult and as a parent to autistic children, I just want to thank you and Emma again for sharing this.
When I was younger I used to cut because I was not allowed to be upset or get upset. When the feelings became too much and I was overwhelmed. Like many things, I hid it from my mother. I was shamed about any feelings I experienced, mercilessly. My sensory issues were me being “over sensitive” Everything was dismissed and ridiculed. I hear people too. I have a visceral reaction to people who are upset and absorb their emotions. Its like having too much empathy where you cannot see or hear certain things without shutting down completely.
Thank you for sharing so many important points about what is helpful and what is not. Emma is changing the world, honestly.
I’m sorry for not being more coherent. I’m very tired and my executive functioning is suffering. thank you. this is only my second comment as I don’t usually comment a lot on blogs.
“I …… absorb their emotions. …. too much empathy where you cannot see or hear certain things without shutting down completely”,.
Thank you for this post and sharing your journey. We learned so much from our Son-Rise Program about how we could still be OK even when Noah (our son with autism) wasn’t. It really helped us all become happier and also gave me the confidence that I could homeschool him, something I had never imagined I could or would do. Sending you blessings on your journey and gratitude for sharing.
Hi Ariane–We’ve received exquisite help on not reacting to Noah’s “impossible” tantrums and behaviors through the Son-Rise Program. They have a depth of ease, compassion, wisdom, 30+years of experience in helping parents and kids with autism get themselves into optimal states of mind for bringing out the best no matter what the circumstance. When I say they’ve seen everything a person with autism can struggle with I am not exaggerating. Miracles happen on the spot when a parent can allow themselves to open to the deepest levels of acceptance and resourcefulness that is within our hearts. Along the way we screw up all the time and the kids let us know..because they always know, don’t you Emma and Noah?
Thank you so much Ariane and Emma for sharing your experiences, perspectives, and feelings about the issue of how to support someone and ourselves when we’re upset by a loved one’s behavior. I’m a teacher of high school students with autism and Emma, I thought so much about what you shared yesterday about biting and I had to sit on my hands and not control my student’s hands while he was pulling out his hair…but I realized that when I found my calm with the situation it seemed to help my student find his calm. This is hard for me, as a teacher, to not say “stop”, but I’m learning. I tried to be reassuring instead. Thank you for teaching us!
You never cease to amaze me Ariane with your brilliant posts, so truthfully told and needed and Emma’s brilliance in teaching us all with every one, the great lessons and beauty behind this journey. My kids too can read people and I find that my daughter especially, her moods are often a mirror reflection, a reminder to me that I need to get my head in check. I am grateful everyday for what my kids endure daily to be here with me as my wise teachers. love to you both
Love, love this post. Thank you.
You could teach a “master class” in understanding children — autistic or not. My husband and I have said probably on a weekly basis that our boy who has developmental challenges has probably made us better parents and better people because of him coming along in our lives. Keep on writing Arianne! And to your husband’s post – wow, just wonderful.
Thank you again.
Pingback: Supercharged | Blue Dog
Hi Ariane – I don’t know if you or your readers can offer help with this question – does anyone know of helpful websites, blog posts, insights re. an autistic child who bites OTHERS? I have an extended family member with an 11 year old child in a residential care setting – it seems to be very good for him, as his eating improved, communication improved there. He bites his mom; I don’t know if anyone at the care location has been bitten. I’m very far away, and hear 3rd person “updates”, but I want to offer some help/resources if I can.
I’m close to grandmom (she’s the one who shares with me sometimes), and told her that he’s trying to communicate and doesn’t have the words, and that they need to find out WHY he’s biting – he’s not doing it for no reason. But I don’t have anything else to offer as this isn’t my personal situation or experience (I “know” them, and have ideas but really, I don’t have enough detail to speak to it personally). I’m hoping that someone who is autistic and dealt with this, or a parent who was able to learn what was going on and help their child through this might have insight
Thank you very much for your help.
@PK: Um, wow, I’m late.