A Parent of Autism



Look at the title of this article. 

"A parent of Autism."

What does it say to you?

Is it acceptable? Does it seem offensive to you?  Where is the child in that equation?  Do you parent Autism or are you the parent of an Autistic child?

Language is so important, probably more than ever before in this day and age when writing is almost as common a communication method as speech.  The advent of Text Messaging and Social Media has made more people more prolific writers than in any time in human history.

Language, to the Autistic Community, has become one of the biggest focuses.  Simply because language is one of the major ways by which to inhibit and subjugate an Autistic person. It can be used to segregate us in a way, I believe, no other minority group has been segregated.  Not by name-calling, but by the language used by the majority of the world to describe us, a language established by the Professional community and now society.

As a rule, a majority of us refuse to answer or associate with 'having' Autism or being a person 'with' Autism.

In my house, every time we see this, we joke about the need for Autism to have a bedroom of it's own, as it is so often talked about like it's a thing of it's own, separate from the person.

This language feeds into the negative narrative of Autism.  Separating Autism from the person, even just verbally without negative intent, allows for the implication that Autism is something that can be directly addressed, something which perhaps can be lessened or overcome, or even beaten...

Which brings me to the parent of Autism issue:

A parent of Autism, an Autism Mom (Mum) or Autism Dad does not exist.  That in itself is the parent taking their child's label and using it for themselves.  Ironically, the people that usually do this are usually the ones that argue against using Identity First Language (Calling their child Autistic instead of saying they 'have' Autism)

What I don't want here is for this to be seen as an attack of parents of Autistic children, it isn't at all. Many parents use language that the Autistic community doesn't like because they have inherited it. Many parents use that language unwittingly, unaware of it's wider impact and connotations. Professionals, Clinicians, Teachers, society in general uses language like this and so parents adopt it too.  Along with the confusing mass of labels and the confusion of what Autism is and 'why' it exists.

Parenting is hard, children bring with them so many joys and so much pleasure, but they are exhausting.  I'll be the first to admit this.

I'll also be the first to admit that parenting Autistic children brings with it a set of unusual challenges which, for most people, go against the grain of what their expectations of what parenting should be, what children should be. This can be made even more difficult when your child has co-morbid conditions that cause further complications.

It's important to remember that these expectations you have for your child, of how they should act, how they should grow up and develop are handed to you by society.  You read parenting magazines and books that depict perfect babies and you look at your screaming baby, that never sleeps and you question what YOU are doing wrong.

Then you have a child who REALLY doesn't fit the societal view and it's even worse.  People don't believe you, people think that it's your bad parenting, the whole "it wasn't like this in my day", raised eyebrows and pointing fingers, whispers, the party invitations that never come...

Or flip it round, the child that doesn't want to go to parties, that wants to hide under a blanket with headphones on,  watching Youtube videos all day. 

The child that is an angel at school then melts down at home where nobody ever sees.

Then there's the child that doesn't speak, the child that seems lost in their own world and over-reacts to everything.

Everybody has an opinion on how you should deal with your children.  Everyone will tell you what to do. Everybody under the sun gives you strategies that worked for their children so they must work for yours and then, when they don't, you question what YOU are doing wrong. Or you question what is wrong with your child. You see that they are different but the message you get from the world is that different is bad or different is wrong.

Some parents become over-hardened to it.  They put on a suit of armour and take up a mission, a mission to solve what they are told is a problem by society. They go on the attack and rightly so, fighting for educational support, emotional support, Professional support, but somewhere along the way it becomes twisted.  For them the fight is against Autism, this thing that has invaded their child, this thing that is making their life hell.

Go back and re-read that last paragraph.

All those things they are actually fighting against is Society.  They aren't fighting Autism. Yet Autism gets the blame.  The Autistic child is different, but society can't handle different, it doesn't know what to do with different.  So instead of working out ways to accept that difference and learn from it, it insists on making the different disappear.

So society blames Autism and so does the parent. Society applies pressure on the parent to change their child.  Sometimes the parent resists to an extent, the same parent that says: "I love my child and wouldn't change them for anything".  The same parent that sends their child to school each day knowing that it is a living hell, but that's what you do.  The same parent that limits their child, insisting that they'll probably never leave home because that is what they expect.  The same parent that sometimes listens to what Autistic people have to say, then toddles back to their familiar 'parent groups' where the negativity gets reinforced over and over again and forgets all they've learnt.

All of this helps feeds the view that Autism needs to be cured and treated or can be 'overcome' or 'recovered' from.

None of which is true.

A Tweet I saw today sums this up perfectly:


"Having a conversation this evening with the mum of an autistic child:

Mum: I have spent years looking for answers.

Me: there are no answers, only human beings.

Please.

Be aware. Be accepting.

#actuallyAutistic."

Robert John Walker Âû


My response to this would be that if a parent has spent years looking for answers, then maybe they are asking the wrong questions.  The only questions the parent of an Autistic child needs to ask are:

1. How do I meet my child's needs?
2. How do i learn more about my child and accept their difference?
3. Who can support me to do Q1 and Q2

These are basic principles that should be applied to any child, yet too often, with Autistic children especially, they're not.

Again, this is not an attack on parents though.  We want you.  We need you.

There are many, many amazing parents that Autistics call Allies.  These are the ones that realise that blaming Autism is not only fruitless, but utterly unnecessary.  These parents go further than the awareness that their child is different, but accept it, embrace it and actively encourage it.  These parents are usually the ones that seek out Autistic people, that ask us for advice, that seek to learn from the people that have experienced all the things that their child is going through. They spend time in our company, listen to the stories of our lives, take our advice

They listen to us. They need us.

This is why, I and many others are wanting to push out not only the voices of Autistic parents, but positive non-Autistic parents of Autistic children.  Parents who have sought us out, have learnt from us and taught us too. Eve Reiland of International Badass Activists is currently spearheading the #AutisticRise hashtag on Twitter and is showcasing parent blogs by both Autistics and non-Autistics.

The next part of this article is not my words.  These are the words of Walewska, the parent of an Autistic child, a Puerto Rican Islander who currently lives in the Washington, DC area of the United States:


I am writing in early 2018 so it has now been little more than 3 years since I learned that my son is Autistic.

Not much has changed about what I believe the focus of parenting should be. I am still steadfast that its aim should not be to mould children into their parent’s likeness or whatever the current cultural image of beauty and success may be. I remain convinced that commanding a child into submission and conformity is not parenting, but is rather violence and abuse. I set out to be a mom with the belief that my job was to discover who my son is or wants to be, what he likes, where he wants to go, and how I can best help him grow into his choices. 


Learning that he is Autistic has not changed this.


Like so many other moms, once I brought my son home from the hospital where he was born, I spent my days with him singing, reading out loud, narrating life as I lived it (both in English and Spanish, since the latter is my native tongue), exploring with him his high contrast books and toys, playing his music instruments, staring at our faces/fingers/hair and our reflections in the mirror... 

In some ways, I was trying to become a newborn, trying to figure out what he might be interested in next. We enrolled in every Mommy and Me class I could find: Spanish, Yoga, Swimming, Music, Cardio, Story Time, Drumming Circle, Days at the Museum, and eventually a 'Mommy and Me' Reggio Emilia nursery school experience a few mornings a week. Some of these he liked; others, it was obvious he could live without and so we did.

He met all his intellectual developmental milestones on or ahead of time, but he was not as extroverted or socially motivated as other kids his age. I was not concerned when he would not happily respond to requests from other adults, because I had little to no problem getting his attention or his cooperation with the simple requests moms usually make (Can I have the spoon back? Where’s your nose? Can you find the doggy?). When I encountered problems, I simply assumed whatever I was doing or asking him to do was uninteresting and switched gears. In fact, I was proud of him for refusing to do things he didn’t want to do, especially after I figured out he did not connect with certain voices: impersonal, harsh, demanding, lecturing voices made him withdraw. 


Shouldn’t we all recoil when we hear those?

I could have chosen to force him to get used to impersonal commands, but instead I chose to ask family and friends to change their attitude towards children and to speak to my son with love and respect. I assumed that his behavior showed competence and communication and believed (and still do) that it showed personality and strength of character.

Family and friends did not always heed my requests or receive them well, but those who listened got to experience a charming, loving, and engaging little guy. As I asked a friend once:

"What kind of world do we live in that a child who expects to be treated with love is perceived as problematic?"

Interactions with other kids were a different matter, but I was not worried about it, because the two of us would enjoy each other so much. Occasionally, we would also have sweet, subdued fun with other parents and non-rowdy, low-key, well-behaved kids. I simply assumed that he was introverted and began to read about introverts, how best to meet their needs, and how to maximize their enjoyment of social interactions.

Eventually, however, I realized that introverted or not, he would need to start making human connections without my extrovert help. I thus enrolled him in a Montessori nursery school, because I believed that this child-centered educational approach would best fit his personality, meet him where he was at, and allow him the freedom to interact (or not) with other kids independently and in a safe space.

It didn’t go as planned.

The lead teacher described him as too work driven and worried that he needed to focus more on social play and interaction skills. I overreacted to this feedback and, despite her insistence that she wanted him to stay in the school, I decided to enroll him in an unstructured play-based, coop nursery (a school setting where parents serve as helpers in the classroom on a rotating schedule). 

Things began to go downhill during our admissions interview with the play-based school’s director, which consisted of her sternly asking him to look for a series of items around the room.

I would have normally insisted that she modulate her tone, but my confidence in my ability to choose a fitting school model for him was shaken (I now realize this was a completely disproportionate and irrational reaction to the situation).

I sat quietly and let it happen.

Within a month, the changes started. He could not find his social way amongst uncaring adults and his 3 years old peers, was not allowed to spend time with older kids (even though he engaged with them and enjoyed their company and even though neither these kids nor their teacher objected), and began to self-talk.

He became a different child: teary-eyed and depressed, anxious, less tolerant of crowds and noises, repetitive, and on the verge of non-verbal.

By the third month, the school director suggested that my 3 year old was schizophrenic and would grow up to become “an adult alone in a room.” My son, in turn, told me that she had called him a “nasty little boy” (I asked him if he knew what that meant, but fortunately he didn’t and I didn’t tell him).

It took more strength that I knew I possessed to keep myself from physically assaulting her, but I recognized that my goal had to be to find him help and an alternative learning environment. So, I shed my irrational helplessness and lack of self-confidence, turned my earth-shattering anger into action, and scheduled a consultation with a developmental pediatrician. 

I have known no bureaucratic process as painfully dehumanizing as the process leading up to my child’s diagnosis as Autistic.

I was asked to surrender intrusively intimate details of our families; to dissect and pathologize every beautiful memory of my time with my son; to reorganize every notion about “acceptable” and “unacceptable” behaviors; and to question and relinquish independent thinking and value judgments. I didn’t do it and no parent should. Not that parents should not pursue a diagnosis and professional help if they believe it necessary to better understand their child; to compel a school to design and implement specific changes to its curriculum or its teaching methods; or, for those in the United States, to facilitate the coverage of expenses by health insurance providers and the deduction of un-reimbursed medical expenses from their taxes.

What no parent should do is let a child become defined by the questions development pediatricians, psychologist, therapists, or school officials ask. 

I was asked to answer questions such as “Did the child behave normally for a time before his abnormal behavior began?” and was not given a choice to answer that neither my son nor his behavior were “abnormal.” I didn’t cave in and didn’t fill any bubbles for the questions I found offensive. Instead, I answered with short paragraph explanations of any relevant behavior or observations, simultaneously registering my disgust for the questions. I did not birth my child to please nurses, assistants, doctors, or government officials, so I felt (and feel) that as long as I provide them with substantive information I don’t have to reduce my child’s life to an easy scan questionnaire. If professionals don’t have time to read through my explanations, they will not understand my child’s strengths and needs and will not provide appropriate care or advice. 

Again, I find no justifiable reason to suddenly re-frame a child’s life, strengths, and weaknesses by rethinking them as “normal” or “abnormal.” In fact, I believe these questionnaires play a significant role in grooming parents into thinking that humans are one or the other and in envisioning their own children as either “dull” or “remarkable.”

Children in general do not need to be either to receive educational, health, or social support services. Autistic children in particular need adults to see them as unique and as nuanced as every other human being trying to make sense of the world and its people. As importantly, service providers need to see and treat Autistic children as whole humans and this can only happen when parents set the parameters for how professionals should behave towards Autistics and for what their Autistic children should or should not deem acceptable. To allow anyone to lower those standards is to place a child’s physical and emotional well-being at the mercy of profit-driven, self-aggrandizing strangers. To raise the bar is to ensure that children will be surrounded by nurturing professional who will cherish their achievements and look forward to supporting their independent thoughts and creativity. 

Given my view of the process, I was fortunate to find two amazing developmental pediatricians, who recommended that I read certain leading medical and therapeutic texts in preparation for our initial meetings and who were not threatened by my questions and pushback. I also did some additional research for negative critiques of the specific therapeutic and educational approaches I found in the literature. Accordingly, I walked into those meetings already determined that we would not pursue, for example, Applied Behavior Analysis (which seeks to control and compel behavior) even if that was the only type of therapy covered by our health insurance.


Based on my advocacy and my preference for child-led educational disciplines, the doctors recommended the Floortime/DIR therapeutic model, which generally seeks to meet children at their developmental level and from there build upon their individual strengths, at their own pace.

For me, letting my child lead this process was (and remains) the only way, because while it was urgent and imperative to begin to undo the harm I inflicted upon my son with my decision to push him into an ill-fitting environment, I knew it had to be done patiently and at his own pace. 


I thus enrolled him in a Floortime/DIR children’s group that met twice a week for three hours and included a psychologist, a speech language pathologist (SLP), and an occupational therapist (OT) along with a number of aides.

Parents were expected to participate in weekly training - sometimes individually, sometimes in a group—on neurological differences; social language; building motor planning and coordination skills; effective and ineffective approaches to encouraging our kids’ attention, engagement, and communication; and even playtime skills for those parents who just couldn’t remember how to play like a child. It would take months to unravel my son’s anxiety and build back trust in well-meaning strangers. Only then was he willing to interact with other children in the group. 

Once he started to interact with other kids, I also retained an SLP and an OT at the same therapeutic center for one hour per week each of private sessions so that he could build confidence in his existing skills without the added pressure of having a peer audience. (This brought his therapy schedule to about 8 hours per week, well below the recommended 40 hours per week that ABA providers recommend and get paid for.) 

Simultaneously, I re-enrolled us in some of the classes we had enjoyed together and continued to take him to playgrounds, small kiddie concerts, the pool, quiet restaurants, and to other sensory appropriate activities. 


I learned to explain our plans to him in advance and to stay only for as long as he seemed able to process the experience. Sometimes, I would call the venues ahead of time to explain my son’s sensory processing profile (and, when relevant, his allergies). To the greatest extent of my ability, I wanted him to become confident again in himself and his surroundings and to make anxiety and isolation the least attractive choice. For us, this meant that sometimes we would drive up to a gathering, event, or venue only to turn right back around, because he was unwilling to get out of the car. Sometimes, it meant that we would arrive early to a class session, watch the others arrive, and leave shortly thereafter. Other times, we would stay through the class, show, or gathering, taking short sensory breaks in the restroom or going for a short walk. 

I never pressured him to stay, because I wanted him to trust that I could see and understand his anxiety and pain and that I valued him over anyone’s value judgments.

Then, there came the process of finding an appropriate school setting, so we went through the public school, special education screening. Public school, however, proved an untenable option. Despite the outstanding reputation of our county’s public school system, I encountered too many ill-prepared, mean-spirited officials in charge of evaluating my son’s needs and allocating school resources.
I was also dismayed to find teachers without any substantive background on the special educational and social needs of Autistic children, overcrowded classrooms, school infrastructures plagued by mold, and school facilities lacking necessary OT, SLP, and physical therapy resources. Reading about the public school practices of restrain and seclusion often used on sensory-overwhelmed, Autistic children—and the serious injuries and deaths they bring about each year—did not help build my trust or enthusiasm. 

Again, I turned to the Floortime/DIR model and chose for him a private preschool that followed this model. He attended it for half a day, every weekday, for two years. (I made the controversial and, in hindsight, imperfect choice of holding him back in the preschool setting an additional year, instead of allowing him to join other 5 years olds in Kindergarten, because I wanted to provide him additional time to master the expectations of group learning, to practice social pragmatics language in a no stress environment, and to help him build confidence in his motor planning and coordination skills.) 

I continued to supplement his therapeutic preschool experience with music learning, horseback riding, baseball lessons, swimming, drama, and other extra-curricular activities he chose for as long as he felt comfortable in them. Today, he is six and half years old and attends a different private school for children with social challenges, which provides him the significant support he needs in navigating the social and friendship world of a learning environment while catering to his academic strengths. 

Against this backdrop of hostile bureaucracy, I underwent a tremendous amount of personal growth.
Explaining my son’s diagnosis (officially, Autism Spectrum Disorder) to family and friends proved to be difficult. 

Many considered the diagnosis a shameful tragedy that should be kept secret. 

Others assured me that he would grow out of it. 

Some told me his Autism was my fault and a sign of my deficient mothering, which I was told included my decision to deliver him by Cesarean section, my decision to breastfeed him on demand for longer than the average US woman, my insistence in co-sleeping, my inability to be sufficiently strict, and my inability as a foreigner to teach him US culture and expectations.

Vaccines also came up as a source. 

Distant relatives became even more distant and so-called friends stopped calling and planning outings. 

As hurtful as this was, it never entered my mind to pay much credit or attention to people who—related to him or not—knew less than I did about Autistics, in general, or my son, in particular. That’s not to say that I wasn’t disappointed and saddened by their cruelty and ignorance. I was, but mostly I was (and am) glad to see them for who they are and to distance myself from people whose prejudice against and ignorance about Autistics revealed them as intellectual and moral miniatures.
I have read more than a few narratives about the martyrdom of parenting an Autistic child and yet I cannot say that I feel anything akin to their loss and sadness. 


In the beginning, I was extremely apprehensive about my ability to make adequate choices for my son, because I had no experience with Autistic children and scarce support from family.

Quickly, however, I educated myself on what little is well-researched about the neurological components of his diagnosis and on the best SLP and OT strategies for supporting his development. As I did, I became more confident as his parent and his advocate. 

With confidence, of course, came the eloquence that allowed me to better explain his diagnosis, challenges, and needs and to rebut the ignorance of others. If there is anything I mourn, it is my failure to perceive his Neurodiversity earlier than I did. I do not, however, have either the time or the inclination to dwell on that, because it helps nobody and adds nothing to our lives. 

For the same reason, I have avoided creating lasting ties with people whose views of Autistics differ too starkly from mine. I simply don’t believe that I can remain true to the parenting my son needs by befriending others who envision my son or their own Autistic children as defective or whose energies are spent becoming internet celebrities or trying to hide or cure their children’s Neurodiversity instead of rethinking their priorities and training themselves to be in tune with their kids’ needs. 

Knowledge truly is power and solace. 


Knowing that my son is Autistic has been instrumental to discovering how best to encourage his interests, address his limitations, and adapt my approaches to meeting his social and academic needs.
His diagnosis has helped me make sense of some of his behaviors, though not others, because he is still a human being with likes and dislikes, sometimes similar, sometimes different from mine. Perhaps most importantly, it has provided me with some useful vocabulary and images to introduce him to the world around us and to allow those in the world who wish to connect with us to do so in terms that he welcomes. 

As a Neurotypical parent, I also realize that as empowering as training myself and finding similarly-minded families in a similar situation may feel, Neurotypical perceptions can never really substitute for Autistic ones. 


This is why I have sought out adult Autistic voices.

That is not to say that I expect any one Autistic person to speak for all or that I would allow a stranger, even if Autistic, to override my better judgment.

It is to say that, to me, no one can honestly say they have explored and weighed the options ahead for their Autistic children unless and until they learn how one or another option has affected other Autistics. As far as I am concerned, I cannot honestly say that I respect my son if I do not respect and listen to others who identify and/or have been diagnosed as Autistic or Neurodivergent.


I cannot teach him to respect and treasure himself without also helping him find a community of people like him, that care deeply about each other and that make the pursuit of social justice and the transformation of our social order the driving force in their professional and personal lives. 


That last paragraph.  Oh my.  Walewska sums up everything Autistic Advocates advocate for in one perfect sentence.

The thrusts of Walewska's message is basically to go with your gut and listen to Autistic people.

Autism comes with many faces, but none of those faces are Autism.  They are the faces of Co-morbids.  The true face of Autism is the face of your child, they are Autistic inside and out, up and down.

The argument often levied against Autistics is "You are not like my child!"

It raises a sad and weary smile from me.  It's kind of a mic drop for some parents who either won't or can't listen.  A conversation ending statement.

We are all like your children.  If you look at me today you will see an adult who is married, has three children, is able to type and speak relatively coherently and engage in society without any apparent problems.  If you'd looked at me 35ish years ago, I was your child.  If not me, then the Autistic person next to me, or the one next to them or so on, because this is not just me saying this, this is not just me sharing my life, advocating for a better world for your children.  There are a lot of us and more each day. I say don't limit your children because many of us were written off as children.

This undeniable clash between Autistics and parents of Autistic children does not have to happen.  There is middle ground that can be sought, there can be at times quite a gulf which can be bridged.  We are not the enemies of parents.  We are not dismissing your views.  We are outnumbered by you greatly, yet we face the same struggle against a Society that treats us like pariahs.  Us because we are Autistic and you, because your children are Autistic. We have Autism in common, we're just coming at it from two different perspectives.  We're here shouting at you, trying to get your attention, so we can share our perspective with you, but so many of you won't hear us.

I know that you are vulnerable, I know that you just want the best for your child.  I know as a parent that you want to do everything you can to help your child, to fix what you might consider broken, to help adapt them into the big wide world.  The best way to do this is not through treatments or making them as normal as possible, but the direct opposite.  To support them to be themselves.  To give them the confidence to stand up and give a big 'fuck you' to whatever the world dictates they should be doing.  To help them be strong and proud and be themselves.

And please remember, no matter how hard you have it (and I know you have it hard sometimes), it's 20 times harder for your child.

You love your child.  Help them and allow us to help you to help them to be the best they can be.

So...

The title of this article:

Nobody is a parent of Autism.  You are the parent of a child.  An Autistic child.  And they are amazing.


For further reading on parenting Autistics and growing up Autistic please visit:

Talking without words: Communication and Autism

How to hide your Autism

I look back at my Parents and wonder how they missed me

An Autistic Education

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