Yes, Professionals CAN be Allies too!

I wish that I could take credit for this post, but my mind would never have captured these sentiments so eloquently. Tracy Hutchinson Wallace has been my guide and rock from day #1. As the other half to our support group Autism Spirit, I have always explained our personalities as 2 sides of a coin… balancing, yet complementing each other. I’m the emotional, heart on my sleeve personality and she’s the pragmatic, educational aspect. But I think we are continuously rubbing off on each other and it results in this. That piece of writing that explains perfectly the logistical issues of the medical model of treating autism while exploring the challenges that can be experienced when the views of #ActualAutistics are pushed to the side.

 

A very brave therapist reached out to me the other day. I say “brave” because I know that my social media self (and me IRL if you are unlucky 😉 ) can be very offputting at times! Anyway, the therapist pointed out that professionals are easy targets for the anger and frustration of parents and disabled communities. They felt that we forget sometimes that they are not just service providers but humans with, often, a significant personal motivation for doing what they do. This was my response…

“Thank you for reaching out. Here’s the thing, you are correct that professionals are seen as service providers. And therein lies the problem. They should behave as if they are PARTNERS and ALLIES, offering supports, accommodations, education AND services to and for Autistics, not neurotypicals. Unfortunately, the medical model of Autism persists in trying to “cure” or “fix” Autistics, despite valid concerns and supporting evidence of the permanent damage inflicted by that attitude. It is disheartening, to put it mildly, to see this attitude demonstrated by a group that is governed by the rule “first do no harm”. It is “privilege” demonstrated in the worst way.

Therapists, as a group, claim to support Autistics, and yet:

  • you still use person-first language and functioning labels
  • you still design, promote and implement methodologies to “help” Autistics be “more” neurotypical
  • you “don’t have a major issue with the information that Autism Speaks puts out, even though that information and the organisation itself promotes an inimical, malignant view of Autism – that’s a disconnect that only neurotypicals can afford to live with
  • you don’t use your influence in the public arena to change attitudes of laymen towards disabilities
  • you don’t support the view that Autistics should be at the centre of, and drivers of Autism research, instead of being marginalized or ignored
    And worst of all:
  • you actively profit from your actions or the lack thereof.

Understand, I too was heading in your professional direction before life laid out another path, so I have no problem with people getting paid. I do not accept, however, getting paid to maintain the status quo, when that state is actively detrimental to your patients. Even professionals with personal knowledge of Autism are guilty of this.

Small wonder that Autistics are hostile – you are helping to make life harder for them, not easier. So, for the most part, you “look fuh what yuh get” as we say in the Trini parlance.

Look, it is commendable that your “deep personal connection” to Autism has inspired you and others to do what you do. From what I understand, #ActualAutistics, more than any other group in the various Autism communities, laud your respect for the privacy of your family members and loved ones. But they don’t need you to “advocate as a regular citizen”. When you do that, you are DELIBERATELY withholding two of your most potent weapons in the fight for Autism acceptance:

  • first, society’s general acceptance and respect for the knowledge and expertise and experiences of medical professionals, and
  • second, for those professionals who are not the primary caregivers, supporters and guardians of Autistics, the extra energy you generally can spare to be allies for ALL Autistics.

Some parental and family allies have the extra spoons to advocate for every Autistic; most don’t, and we could really do with the support and influence wielded by professionals who don’t actively have skin in the game.

If you really want to improve the quality of life for the spectrum of neurodiverse humanity, then don’t just exercise your profession, conduct your therapies and get paid. Instead, listen to actual Autistics, follow their lead in advocacy, make the needs of Autistics the centre of whatever you do and say, and use your privilege wisely. Be an Ally, not an anchor around their necks.”

If you are interested in the work our support group does, please check out this link http://www.facebook.com/autismspirit 

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Frustrated, Angry or Tired?

I love my son. I hate being an advocate.

The activism and advocacy part of this journey is something I never went looking for. And as much as I would never want to change my child, I would gladly give this part up in a heartbeat. With every choice I make, my intention is always in the best interests of him.

Advocacy was something forced upon me or maybe I stumbled into it. I didn’t suddenly wake up one morning and decide I’m going to spend hours every single day fighting for basic human rights. I didn’t decide that I would prefer to spend countless hours researching United Nations Conventions and laws applicable to where I live, instead of spending quality time with my son.

I didn’t choose to become a speech therapist, an occupational therapist, a psychologist, a nutritionist, a food therapist, an administrative assistant, a financial planner, a teacher… all self-learnt and without the benefit of years of professional studying and training. All I wanted was to be a mummy.

Unless you’re in our shoes, I’m not sure that you can totally wrap your mind around the fact that being a parent of a child with special needs is tough. And depending on where you live, it can be even more difficult. We wait 15 months or longer for an appointment to diagnose. If we choose to pay privately, we pay in excess of US$1000. There is no publicly available speech or occupational therapy. So we have to pay at least US$50 per session. There is a special needs grant of approximately US$120 monthly. But your eligibility is determined through means testing. So if you have a job or own a house, you are not going to be approved. Disregard the fact that your job is less than minimum wage. Disregard any of your expenses. Disregard that your house was inherited and is little more than a roof over your heads.

We have to hope that we can find a school willing to accept our children and then be faced with the criticism that our children are “disobedient and lack discipline” when the reality is that they are misunderstood and few are willing to go the extra mile to care.

We watch as our children are ignored by “friends and family” who think it’s too much trouble, so they don’t invite us to parties or outings. And then we try, often without success, to pick up the pieces of their broken self-esteem and help them glue those pieces back together.

I’m not frustrated; I passed that stage a long time now. I’m not angry either; it’s a wasted emotion that doesn’t change or improve anything. I’m tired: mentally, physically, emotionally tired! I want to be able to play with my child and spontaneously go to the movies… not plan a half hour trip, 2 days in advance because I have to think what time will have the least people and there won’t be as much noise, but it won’t be very bright outside because it will hurt his eyes and will there be anything that he will eat or is the cinema out of stock of plain cheese pizzas? And trust me when I say that being out of pizza will lead to a meltdown.

There’s my vent and rant of the week. The people who are on the same journey will understand what I’m saying. The people who have not stepped into my shoes will likely scratch their heads and think that I don’t care about my son or I wouldn’t say these things. Some may try to understand and I’ve always believed that if I am able to reach just one person, that counts as a victory. Now I’ll go back to my son and continue to try my best to make this world a better place for him.

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Why I Hate April

April is Autism Awareness month. Last year I remembered an intense sense of dread and depression about two weeks in and I found it necessary to remove myself from the usual social media channels that I would frequent. I anticipate this year will be no different. Allow me to explain…

The ongoing battle as to what color, hashtag and symbol should reign supreme

When my son was first diagnosed, almost five years ago, one of the first organizations that I came across was Autism Speaks. It took almost a year before I learnt how vilified this organization was by the vast majority of the autism community. To my understanding, the color blue and the puzzle piece symbol were largely instituted by Autism Speaks and remain irrevocably linked to this organization. A full explanation of all the controversies with Autism Speaks would require its own separate blog post. But it can be simply stated that if you use the color blue, the hashtag #lightitupblue or the puzzle piece to indicate your support for autistics, you will be categorized as a supporter of the organization.

This places me in an awkward position. My son’s favorite color is blue and he connects with the explanation of the puzzle piece. As he gets older, his views may change and if they do, my support of him as an autistic will also change. In the meantime, I’m stuck between a rock and a hard place. I’m expected to support autistics by using #redinstead and the infinity symbol. But not support my son who is autistic and the reason behind all of my efforts and advocacy since it is automatically assumed that if I use the color blue I’m supporting Autism Speaks, which could not be further from the truth.

Awareness vs Acceptance

Another recurring sore point is the argument of which is more important… awareness or acceptance? People are encouraged to support #AutismAcceptance and constantly told that #AutismAwareness isn’t enough and to eschew awareness. The comments on social media are often brutal.

But here’s my thought process… when my son was diagnosed, he was the first official autistic person I knew and that extended also to most members of our family. I was then tasked with having to explain exactly what autism is and there are several members of my very large extended family who have limited education. I had to break this down to bare basics. How can I press for acceptance to individuals who have no understanding of the situation? It quite simply doesn’t make sense. So as much as awareness has grown, I believe it is still a crucial aspect towards achieving acceptance.

Autism awareness month is every month

Look out in April for the multitude of posts proclaiming “every day is autism awareness day in my house” and “autism awareness month is also January, February, March, May, etc”. Here’s the thing… my son is autistic and yes, we live with autism every single day. But the average person doesn’t. And while I want that person to figuratively walk in my shoes or my son’s and understand the challenges we face and how they might be able to support better, I want them to live the life that they have been dealt. That means every day will not be autism awareness day in their household and every month will not be autism awareness month either. By having a specific time, conversations are created with those who are outside the community and I believe that is the major route towards acceptance.

Person-first vs identity-first

This argument tends to intensify during April. Let’s explain first… person-first language is where the person comes before the condition e.g. my son with autism. Identity-first language places the condition e.g. my autistic son.

Going back to when we first received the diagnosis, we were encouraged to use person-first language. The essence of this approach is that we recognize the individual most importantly and I value that viewpoint. Truthfully though, I always found that it seemed very wordy and not particularly fluent. However, this wasn’t about me so I continued.

The turning point happened about a year later when my son described himself as autistic. We sat down and spoke about the two different ways of describing autism and I asked him which he preferred. His response was what guided me to switch to identity-first. Aside from him also thinking that person-first language was superfluous and wordy, he said to me “won’t I always be autistic? Isn’t this a part of me for life?” And he’s right. There are many more aspects to his life and personality but autism shapes a lot of them. We choose to celebrate autism so why not allow it to be forefront in who he is.

Here’s my issue… when individuals are berated and belittled for their choice of language. If someone uses person-first, they shouldn’t be criticized for that unless it is clear that their decision to do so is from a malicious intent. The larger autistic community prefers identity-first, but there are some who don’t. And that should be respected without needing justification.

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I hope this April will be different… a month when we can show greater respect and tolerance for all of the different ways that autism is represented. And if not 2018, maybe the following year.

“Mummy, I Don’t Want To Be Alive”

In April of 2015, Joaquin had the worst meltdown of his life: the meltdown that devastated me for weeks and made me question every ability in me as his mother. A series of events led up to the breakdown and throughout each one, I kept thinking that he was doing so well. In retrospect, I should’ve known this was a recipe for disaster in progress.

#1 – He had no school the day before… schedule out of whack.

#2 – We couldn’t find his iPad that morning… but he’s still good.

#3 – We couldn’t find his dark blue track pants that he always wears on Saturday mornings.

#4 – The big one, eye doctor visit… invasion of personal space and being poked and prodded.

All of these are not things that my boy takes very well without ample preparation and even then, I can usually only hope for the best. So what was the trigger? In order to keep him calm, I promised him at the ophthalmologist that he could use my phone after to play games. We got into the car and while we are driving, he asked for my phone. I then decided to change the arrangement and told him that we should do spelling first. All hell broke loose… screaming, shouting, he tried punching me while I was driving.

To a parent, who is unaccustomed by this behavior, the first thought is that this is a lack of discipline. But for a child who has extremely established routines, who needs forewarning before the plans change, who needs to go through all possible outcomes, so he can determine how he will address every possibility… this is not unexpected. If I had given him the phone and said “you have it for 1 minute and then we do spelling”, he would have been fine.

But instead, I changed the agreement completely and his brain isn’t always able to process that in the best way. So aside from attempting to physically hurt me, he will also hurt himself because he cannot verbally communicate his heightened emotions. On this occasion, he tried to open the car door while we were moving. I was able to pull over and after about 30 minutes, of him screaming and crying and me doing nothing more than bear hugging him, while trying to calm him, he said “mummy, I don’t want to be alive”.

My heart broke completely. I had no words. All I could do at that moment was hug him and allow the tears to flow from us both. I felt emotionally and physically ill for weeks after. I questioned the need for spelling, my need for discipline. Why didn’t I just give him the phone? I believed at that time that I was the worst mummy ever… that a good mummy would’ve been able to fix his hurt instantly. Or better yet, would not have caused his hurt in the first place.

But as with all challenges, there comes a time when we have no choice but to dust ourselves off, pick up the pieces and continue to fight. I know that I’m not perfect. I also know that I’m the best mummy my son has and I will do any and everything to help and support him. This is simply one more challenge to overcome.

If you’ve ever experienced anything like this, know that you are not alone. Know that there is at least one mummy who feels all the emotions you’re going through. Know that this will get better.

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I didn’t know any better

My son’s name is Joaquin, his name meaning “God will determine”. For many years, I believed that motherhood was not in the cards but in 2008, I happily discovered that I was pregnant. My pregnancy was perfect in every way and I was given my son as a gift and for a purpose I never imagined.

At 4 weeks, Joaquin had surgery for pyloric stenosis, an abnormality of the lower stomach muscle that caused him to reject all oral feed. At 2 years of age, he had eye surgery to correct a squint, without which, his vision would have been severely affected. I thought that was enough, but God already had a predetermined plan.

In 2013, at 5 years of age, he was refused admission to several primary level schools. The explanations were vague and I was completely stunned. These schools were saying he wasn’t ready. But this was the same child who was talking in full sentences at 14 months, knew his alphabet at 16 months and could count to 20 by 18 months. What exactly did they expect from him?

On our 11th attempt at a primary school, a single question changed our lives. “Has anyone ever suggested to you that your son may be autistic?”

I was devastated. I considered myself to be reasonably educated, but I knew nothing about autism. I ignorantly thought that anyone with autism was below average intelligence and unable to speak. So why was someone now suggesting that he was autistic? What were they seeing that I was missing?

And slowly the signs emerged. The little things that I thought were quirks were the glaring signs that had been right in front of me. But I simply didn’t know any better.

  1. Joaquin very rarely made eye contact. But I thought this was as a result of his eye surgery.
  2. He always hated people in his personal space. Hugs were always a very rare occurence and often reserved for the most loved people in his life.
  3. His need for routine… when he woke up on a morning, he would take 15 minutes to watch cartoons, then he would use the washroom and brush his teeth. He had 2 toothbrushes: a spiderman toothbrush and an ironman toothbrush, and they had to be alternated every day. Then breakfast and dressing for school. Whenever something happened to disrupt the pattern, his behaviour would descend into madness. The worst crying and screaming! I thought he was being rebellious. It never occurred to me that it was something more.
  4. Three straight years of hearing about nothing other than Lightning Mc Queen. Gift buying was easy so I never questioned anything.
  5. Toy cars in line… and don’t you dare take one out of sequence! Refer to the latter portion of point #3 – crying and screaming!

For over a year, I blamed myself. Obviously if I was a better mother, I would’ve known. But the reality was that I didn’t know any better. I didn’t know a single autistic person and at that point, I don’t think I had even interacted with one.

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To the mom or dad reading this and you’ve just gotten your little one’s diagnosis, and you’re wondering as I did if you’re at fault. The answer is NO! If you’re confused and overwhelmed by the deluge of information out there, know that this is not an illness or a disease. It’s simply a different way of processing. And in time, things will start to make more sense. Know that there will be good days, and not so good days, but there is a community of us who understand and will always support you and encourage you.