Mothering Autism

by Guest blogger on November 10, 2009

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When our oldest, Emily, was just shy of 3, we learned that she had Autism. It was such a stressful time in our little family’s life. Our baby, Alex was almost a year old and was crying all of the time for unknown reasons to us then and my husband’s job was rocky and unpredictable, therefore, so was our income. I just remember feeling like our world was falling apart. For days after the diagnosis, I mourned. I cried randomly, usually during one of Emily’s many meltdowns of the day.

EmilyAlexKissI had many afternoons on the floor holding Alex, laying next to Emily and all three of us sobbing in unison. They were crying because they couldn’t communicate and were in pain and I was crying because I thought I lost my daughter. Days later, I saw a glimpse of her, I saw a fighter. I saw who she really was, peaking through that Autism armor she was wearing. She wasn’t giving up and neither could I. Instead of “Why me? Why Emily? Why us?” my thoughts quickly became, “Autism? BRING IT.”

Previously, doctors all pointed their fingers at me. I wasn’t letting her grow up; I coddled her and treated her like a baby. She was 2 and shouldn’t be sleeping in bed with us. I was criticized for not sticking her in a crib and letting her cry herself to sleep. I was criticized for holding her all the time and even for not yet putting her in a preschool program. It was my fault; I was causing her to act this way. I gave her the behavior issues and caused her to not talk because I refused to withhold things until she “used her words”.

I put her in a bubble, admittedly. I didn’t want anyone to talk to her, for fear that they would notice that she wasn’t babbling and start asking what was wrong with her, or give me the pity comments like “She will talk when she talks”, or, “my Uncle’s, son’s friend didn’t talk until he was 4!” I didn’t take her to story time or the playground, for fear of starting a meltdown. I kept her purposefully away from people, especially children, since she seemed to be scared of them. For that, the doctors pounced on me and ripped me to shreds. I created it.

Once we knew what we were dealing with, we jumped at any chance to talk to others who were experts in Autism or had a child with Autism. If I thought my parenting style was under attack BEFORE the diagnosis, I found that it was nothing compared to after receiving the diagnosis. I was told that her best bet would be to put her in full time school, to schedule every minute of every day, to put her in her own bed, to make her sit and eat at the table, to ignore her if she cries; the list went on.

EmilySwim

The most devastating thing that I was told was that I needed to be away from her during the day. I needed to let go and that my attachment style of parenting was only making things worse, as if my mothering was creating this monster inside my beautiful daughter. I refused to believe it. There had to be a way to mother her the way that we both loved and still help her achieve a higher functional level.

I wasn’t terrified of Autism until I started hearing what therapy was going to entail. ABA behavior therapy has been proven to teach our special kids how to cope in every day life, to give them life skills so that they can be functioning adults and contributing members of society. It will give them their independence and give us as their parents, peace of mind, knowing that they will be ok after we pass. It is essential in order to give them a life.

The therapy was described to me as being rigid, unforgiving and harsh. The sessions would be full of flash cards and tantrums so I better be prepared for that. I was afraid but willing to try it and put my daughter in the hands of the experts hoping that it would help her learn to function in our world and not just stay in hers.

EmilyRunningAfter a very traumatic therapy session, I broke. The ABA therapists, who were strangers to her, locked Emily in a therapy room for an hour and a half, taking away toys without warning and making her do flash cards. They did what they intended; they caused a tantrum, the worst I had ever seen. She was screaming, falling to the floor, throwing toys and at one point, even picked up the kid table and chairs and threw them across the room. She was crying out for me, her “ma!” and when I didn’t come rescue her, she started calling out for her baby brother.

She was in the therapy room and they put me in the next room behind a two-way mirror with full audio. I was able to see and hear everything that was happening and against my instincts, I let it go on longer then it should have. They wouldn’t let her out or me in as one therapist was in front of the door blocking Emily and the other therapist blocking me on the other side. They kept telling me that it was important to “see her tantrum all the way through” and that she needs to learn that she will not get what she wants if she cries. They treated her like a wild, caged animal, broken and beaten down and I let it happen.

It caused a regression in her that lasted for months. She started slurring her words, spitting and hitting again and she started randomly shivering and crying. She was lining up her toys again; her arm flapping and spinning were present constantly. She was having nightmares and refusing to eat; it was devastating. She was a mess and so was I. The amount of guilt I felt was unbearable. I let her down and thought that she had stopped trusting me.

I finally said enough and took control of her therapy and her progress. I refused to leave her in a room with a therapist and gave strict instructions on how they were to treat her. After months of trying to find a new ABA therapist, we found one and felt it was a great fit. I was upfront about the way that we do things and she embraced it and has since showed me quite a few things along the way. She teaches me just as much as she teaches Emily and has become an essential part of our lives. She tells me that we do a Hippie style of ABA. I like that.

AlexFingerpainting

Alex is now almost two and after the first round of assessments has been determined to have Developmental Delays. His appointments to test for Autism are in January. I don’t need tests to know that he is Autistic, once you live with Autism every day, you just know. The diagnosis will help me get the other services that will help him. The best part about this time around is that I know what to expect, I know what to do and what not to do. I know how to mother him without a doubt in my mind of what is going to be best for him.

Autism? BRING IT.

*Note – I have since learned that the traumatic ABA therapy session was not typical. Our experience was not what ABA is about. If you have a child with Autism, please do not discount this therapy based on our experience. ABA is not for everyone, but know that it can be tweaked to fit your family’s needs. The therapist makes all the difference.

Camille is the mother of two special needs children, Emily who is 3 and Alex who is 1. Her passions are Attachment Parenting, Autism research, including biomedical treatments and just being Mom!

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{ 17 comments… read them below or add one }

Michelle Hesse November 10, 2009 at 1:07 pm

Oh how heartbreaking! But I understand. Although I am new to AP, I was doing some of it the past three years anyway. I wish I had known more about it back then, though.
Anyway, When my girl was 2, she was considered borderline autistic and they also said daycare was the best thing. I fought it and did things my way…what I felt was right. I read about ABA and did it myself. A year later she is now advanced in all her speaking and other developments. Now ‘experts’ say she is probably Aspergers…because of her ‘quirks’ and the way she still lines things up and is very awkward around other kids. Whatever….she is my girl.

OH, talk about a traumatic day…one day my mother in law, who though I was being over protective, just came and told my daughter that she was taking her shopping…and picked her up and said bye. My daughter was screaming and I started to cry and after I got my wits about me (because I was in SHOCK) I called her on her cell phone and said bring her back now. She did, and she also finally saw that my girl was not like most kids and started trusting what I was doing. But It also took my daughter 6 months to even give her grandma a hug again (my girl holds grudges and I think was severely traumatized)
Ok, sorry if I rambled! But you wrote a great article and I had to comment! Thank you and good luck!

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Jamie November 10, 2009 at 2:27 pm

You are a wonderful mother, Camille. I find that the things the doctors tell me to change or take away are also the things that make my children as strong and independent as they are. Always trust your instincts!

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Meei November 12, 2009 at 1:12 am

It breaks my heart to read about the traumatic “therapy” session. I am glad it’s all better now. As parents our job is to nurture and teach and I believe any teaching can be done in a humane, respectful manner accepted by both teacher and learner.

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Susan Rutkiewicz November 13, 2009 at 2:55 pm

Hi,
I have never left a comment before as I am new to all this however I saw some information this morning on autism. I don’t know where it was however a women was showing a child flash cards and he was able to read them.Sorry that i don’t have any more info.
Susan

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Amy H. Aymond November 18, 2009 at 7:18 am

Wow. This is my story too. I am also attachment parenting a 3 year old with autism. Your story was beautiful.

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Sandra December 7, 2009 at 11:56 pm

“If I thought my parenting style was under attack BEFORE the diagnosis, I found that it was nothing compared to after receiving the diagnosis.”
NO JOKE! My son’s diagnosis came just this year (he’s 8), we believe his sister is on the spectrum as well (she’s 5). Years of being told if you’d just stop or start…. and years of me crying THIS IS NOT BEING CAUSED BY PARENTING!!!! all came clear with one word… Autism. Quick, go to regional center I was told by the kind professional. So off I went, only to be judged again by my parenting and the diagnosis questioned. The same friends and family who’re quick to tell me how I was doing everything so different and raising two spoiled brats are the same ones now saying “IF they have autism, it certainly isn’t “mainstream autism””. Considering I’ve worked soooo dang hard through attachment parenting to establish and maintain what little bit of connection I could with these precious little ones whose brain’s weren’t naturally wired to establish and maintain connection back…
Not being “mainstream autism” is the BIGGEST compliment you could ever give me. ATTACHMENT PARENTING ROCKS and kids on the spectrum are all better for it!!

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Patricia October 5, 2012 at 3:03 am

Sandra,

I completely agree! Our four-year-old with Autism (named Emily, also) is completely bonded to us, loves us and expresses it with affection, expressions and words. If I hadn’t been such a “clingy” or “overprotective” or “granola” mommy from the start, who knows?

We have a family bed and other things people told me I was nuts for, but you know what? On the paperwork containing Emily’s official diagnosis, the Psychologist actually included a section where she praised us for creating such a loving environment for our child, which she states is responsible for her developing as well as she has.

It was wonderful to get such praise, after years of being questioned.

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Robin Maria Malott March 18, 2010 at 9:58 am

I also AP my HFA (3 year old) son. He had feeding issues – actually refused to eat anything other than breastmilk until he was 21 months! I was still night nursing at the time. You can imagine the criticism I got for that one! So I definitely feel for you.
Anyway, the reason for my post is that we do Floortime with my son and I find it works sooo much better with him (and the AP style). It approaches autism from the developmental aspect instead of behavioral – it’s simpler than the ABA and easy for you to implement at home. If you haven’t looked into it I would check out Dr. Greenspan’s book ‘Engaging Autism’. Between this and the AP’ing my son really engages with people.
Anyway – good luck with your journey!

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Lorelei April 4, 2010 at 8:07 am

Gosh, I wish I’d found this sooner. I also have a 3 year old with autism, and he has a twin brother who doesn’t. I have struggled to do AP as much as I could since they were born, but with twins and having to work, it has not been easy. I also found that the moment the intervention people got involved, they wanted to do some pretty horrible things to my child, and that much of their advice was counterintuitive. It has been very lonely. I wish there was a place to connect to other AP parents with autistic children. Looking for one is how I found this website. If anyone knows of a forum or a group or something … please let me know. also, fyi, I also have been doing mostly floortime, myself, with some aba-ish type things … there’s something called sonrise that I recently discovered and seems similar and ap-ish maybe, but I don’t know much else about it. oh, also something else called, I think, dri or rdi, and it’s a lot like floortime too. for anyone else coming along and struggling to find the right approach. I DO think attachment parenting is really important, but also that some gentle help in hatching seems helpful too. I’ll try not to ramble too much here, but in the case of my child I am quite confident that part of the problem is difficulty in multi-tasking and processing multiple sensory inputs simultaneously (I recommend the mislabeled child to understand some of the technical stuff) … also, learning has to be fun and NOT TOO HARD. If something is just too hard, it’s no fun, and no one especially a young child will want to do it. That’s why my kid was behind on language …. he can’t do anything else and also listen and try to decipher and decode AT THE SAME TIME. he has delays in processing sound, so I had to slow down my speech and carefully enunciate. I also had to work harder to keep it fun for him to learn and play with language, and then his language development just took off amazingly. But you have to make special efforts to focus on it if you have a kid like mine, because otherwise it’s just too hard. I mean, I never could learn physics for the same reason. But if someone had tried hard enough to bust it down for me and keep it fun, and maybe even occasionally offer me a little mango sorbet as a little extra inducement {wink}, heck I might be a physics professor today. My 20 cents.

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Michele Fouts September 27, 2010 at 5:22 pm

I too am looking for a forum for AP and autism. It is so sad to hear these experiences but so typical as has been my experience as an autism consultant. I would highly recommend looking into RDI (Relationship Development Intervention) as I see AP philosophy complementing the RDI approach quite well. RDI is about parents lovingly guiding their children to enjoy and feel confident in relating to them and others in progressively more dynamic ways. Nothing is forced and the parent child relationship is the key vehicle for growth and development.

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katie October 11, 2010 at 6:26 pm

have you ever been to mothering.com’s special needs forum? there are tons of AP moms of autistic kids doing aba, rdi, floortime, etc. it’s been a LIFESAVER for me!!

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naomi December 17, 2010 at 5:31 am

wow I’m so glad that you attatchment parenting parents have your parenting style blamed for your childs autism!! because I also have a child with autism and don’t attatchment parent, I did ALL the things mentioned that you were told to do by therapists by instincts and I still get told by my family that my child has not got autism and that my parenting caused his behaviour problems even though he has been dx by proffessionals. I have had to dissasociate from my family because of the constant guilt and emotional stress that they put me through. it just proves that autism is not caused by your parenting style, i am a routine parent style. I did not co-sleep, and my child went to playgroup and daycare from 15months old to supposidly learn social skills, this was before he was even diagnosed!!!!

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landry March 25, 2012 at 7:22 am

ABA is dog training; just another example of society molding us to who they want us to be.
I started using attachment parenting when my son was born by instinct. At 2.5 we found out he was high functioning autistic. I truly believe it is because of attachment parenting that his symptoms are so mild. I nursed him till the 2.5, practiced extended kangaroo care, we still co-sleep, NEVER used cry it out, tried to never belittle him for his actions, meet his needs as quickly as possible, and tell him every day how amazing he is and how wondrous his gifts are.

When I consider brain research I believe it is because of AP that my son is high functioning. The first way we learn as humans is through touch; this grows the brain and makes more connections that any other learning modality. I also know by meeting his demands quickly, not making him go into distress or cry it out has enabled his brain to develop much better than the typical ASD child. My son read, spells, identifies the states & some countries, adds, and many other amazing accomplishments at age 3.5. He does not throw tantrums and is able to love, kiss, hug, & say I love you to everyone he is close to (sitter, teacher, aunts, uncles, cousins, close friends). My son still struggles with socialization, communication and abstract thinking (all of his learning if from memory; he has a photographic memory), but I will take that! I know with all my heart that AP has helped my son function more fully in society.

*A word of caution: I did find out when my son was 2.5 that I was full of mercury & I was passing this onto him in my breast milk (I was raised on a SAD diet and suffered many side effects, poor oral hygiene & probably my son’s ASD being part of that. Our bodies have made huge improvements eating ONLY nourishing REAL food). I had no idea, I had never heard of this. I wish that this information would be made publicly available & hopefully parents intending to have children could detox prior to conceiving. Please pass along.
I do not regret my decision to nurse my son to 2.5. I would do it again. I know the touch helped his brain develop & gave him a milder temperament & hopefully nursing helped his immune system. I do believe that the mercury had a great roll in his ASD. I would have certainly taken all measures to detox prior to conceiving had I been aware of this phenomenon.

Best of luck to everyone. Continue to love and nourish your children mind, body, & soul. We are only here for a little while.

Forget mainstream thinking and stand out from the crowd!!

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Naomi March 26, 2012 at 9:24 pm

It does not matter what style of parenting you have, I’am a routine style parent and My parenting has also been ridiculed. My son has autism and adhd combined type.

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Rena July 16, 2012 at 7:08 pm

Our AP too got many critisism and blamed at my 3.5 yr old suspected autism. While we waiting for an appt. Ofr the assessment, I know in my heart that AP n breast feeding (till 2.4 yrs) and created a great bond between us. in fact when we did the checklist, many of his autism like behaviour were already corrected with gentle reminder. While physical touch initiated by strangers or unfamiliar ppl to him is a greatly offensive, it is ok when it is initiated by him. We believe that AP had actually lessen a lot of the autism traits which otherwise maybe even more difficult to correct.

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Patricia October 5, 2012 at 3:13 am

This is a very good piece. Thank you! I’m mothering a child named Emily who also has Autism, so to say it hit home is an understatement.

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Laurie December 13, 2012 at 1:40 pm

I really enjoyed this post. We have used AP for a very long time and have been very resistant to ABA for our son. Our son is now 12, and while we are working with a BCBA to provide some structure, I found it a challenge for the therapist to meld the therapy into a therapy that is both effective and considers our perspective. I LOVE the term hippie ABA…that’s what we want!!

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