Category Archives: human

A Note to Parents

Doesn’t matter if they’re disabled or completely abled – here’s a note to parents on picture and filming etiquette when it comes to your children.

Imagine you are upset or distraught. It doesn’t matter why, when or where… You’ve lost your temper or you’ve just burst into tears – your emotions have gotten the better of you right at that moment and you just can’t control it any more – they’ve all just burst out. It may take you a little time to come back to yourself, calm down or cheer up – and get on with the business of being you – but you had a weak and vulnerable moment where you were completely and emotionally raw.

Now imagine that while you were in that raw and distraught state someone close to you shoved a camera in your face and either filmed it or took pictures of you in that moment. They took a moment when you were vulnerable and they took pictures of it – that they then proceed to put up on the internet for all their friends and your family to laugh at and to some degree ridicule.

How would you feel about their action? How would you feel about that person? That person close to you – who is supposed to care about you – would you still be their friends or talk to them after that? After they completely breached your trust that way?

If the answer is “No.” or that you would feel utterly humiliated and ashamed – that you wouldn’t want to talk to them after that – that you would be HORRIFIED to have a private moment where you broke down shared everywhere for the sake of comedy.

Take five seconds to think about the fact that millions of parents do that EVERY DAY with their children. Toddlers to pre-teens (Sometimes even teens). Every day there is someone uploading a picture or a short film of their child in a vulnerable and emotionally raw state for whatever the reason – ludicrous or not – up on the internet for their friends and family to see, for the world to see.

Your children have just demonstrated that they have the same emotions as you – why would you show a complete lack of empathy to them by sharing that moment? Maybe you can’t always fix it – maybe it is in reaction to being told no for some reason – maybe they refuse to let you comfort them… but that’s not the point. If they have to go through the whole thing without you being able to help them feel better… DON’T go ahead with something that were they your age would make them feel WORSE. That they don’t understand it isn’t a good enough excuse – you’re still humiliating them.

You want to share the experience with friends and family and hope for people to come up and say “oh me too- my kid does that too” so you have someone to talk to about it.. fine – USE YOUR WORDS and write it down. DON’T take a picture of it or film it. Because there is NO WAY your child can consent at the time to having their picture taken then (and likely if it were you – you wouldn’t consent to it – so why do you imagine they would?).

It’s not funny. And I don’t understand how you can’t SEE that.

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Filed under "matyr moms", family, human, mistakes, personal

Really Getting Tired of “So-and-So Supports”

There is a magical talisman.

It’s AMAZING.

See – this talisman says that if “such-and-such” member of a minority supports “such-and-such” campaign, viewpoint, person, organization that says things that could be (and often is) found offensive by other members of that minority – then it’s all okay – because it’s been approved.

There’s a “minority approval” sticker which means that if you just get maybe a couple of famous people and a handful of others who are members of this minority to agree with offensive thing – it’s magically not offensive.

At least – so is the apparent belief.

Dealing with not offending people is hard – I do understand that – you can’t speak for getting it wrong. You have to ALWAYS ask first, be ready with sincere apology, not allow yourself to think your intent makes it “okay”, and if you can’t ask first you have to go with the largest consensus you know of on the topic (But ready with that apology). It can also be really hard because there are lots of members of minorities who are exceptionally tired of being “ambassadors for all [insert the minority they’re part of]”.

But one of the things you really need to pay attention to is:

Where is the consensus coming from?

Today is November 1st – it is the 4th Annual Autistics Speaking Day.

It is also the 4th Annual “Communication Shutdown” Day.

The Autistics Speaking Day was sparked by autistics who were arguing against the stereotype put forth by Communication Shutdown that communication difficulties with autistics is all the fault of or entirely upon the shoulders of those who are autistics and that not communicating on Facebook or Twitter is somehow comparable.

The “Communication Shutdown” was sparked by a bunch of charities for autism and it’s part of their “awareness” efforts (its interesting how there are so many charities for autism that want to raise awareness and so few wanting to raise acceptance [also notable how many of those that want to raise acceptance were started by or have autistics on their boards – and how few of the ones that want to raise awareness do])). Basically you get to pay money for an app that will put a picture on your Facebook or Twitter that lets you tell people you’re taking part (regardless of if you interact on those media sites or otherwise anyway).

It’s solely for fundraising basically. Fundraising for a group of charities “for autism” but probably not for autistics. It’s one of those token things like the ALS ice bucket challenge – to give able-bodied, non-disabled people the idea that they’re SOMEHOW seeing what it’s like to live with such-and-such disability without actually living that disability and on the basis of only one possible difficulty in relation to that disability and not the thousands of others that are involved or are knocked over like a domino topple by this issue so that it spills into more areas of your life.

It’s rarely EVER one thing.

Person stuck in a wheelchair? Put ramps everywhere for their wheelchairs.

Fixed the problem? Nope.

Because you’ve got to have sufficiently dropped curbs, the door sizes need to be of a reasonable height, can they reach light switches or other things that are necessities for them to reach? Is there a reasonable exit? Is the meeting on the ground floor? Is there a lift? What if there’s a fire and you’re not supposed to use the lift? What if the fire truck can’t get there in time to take them down a ladder out of the building?

Is the reason their in a wheelchair JUST their legs? What if their arms are effected? Neck? Do they have intellectual disabilities? Muscle/bone weakness?

I’m not saying it can’t be one thing – but even if it IS – there is no one small catch-all solution – there are still a thousand of other things that it effects.

My autism does affect how I effectively communicate. People’s allistic and neurotypical experience of the world effects how well they can get what I’m saying. But that’s not all that’s happening – and just “fixing” my communication problems are NOT going to solve my problems.

I hear that Temple Grandin “supports ‘Communication Shutdown'” and I can’t help but sigh in an exaggerated way.

Yeah – I’ve seen autistics who support that kind of thing. Ones that insist that they’re not disabled (Good for you! I am disabled so please stop telling everyone that ‘autistics aren’t disabled’ – because I NEED HELP YOU DON’T). I’ve seen ones that support ABA and horrible attitudes/parenting decisions. Ones that tell parents who film their children’s meltdowns that they’re “sorry for what they’re going through” and that the parents are “so brave”.

I’ve seen ones that ask really offensive and ableist questions.

And the fact that they’re walking around identifying as autistic and some of them even with diagnosis to prove it – doesn’t mean that their approval of offensive things doesn’t make them no longer offensive.

Sometimes it means they’ve internalized ableism.

Which makes me sad.

Because maybe we have something in common.

But you’re not speaking with me.

You’re speaking against me.

Which is depressing as I have nothing against you and I don’t in anyway want to make your life worse – but I would like to make my life better, and the lives of all other autistics that I can help in anyway.

But sometimes – that’s just how it plays out.

But just because someone in a minority approves. Doesn’t mean you have the approval and support of all the minority – and if more of us speak out against you – then what we’re saying – should be listened to.

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Filed under ableist language, autism, autistic self advocates, human, learning, reaction

A Letter To Ken Stewart Family Centre (18 Year Later)

Dear Ken Stewart Family Centre,

I don’t remember the names of the workers that my mother and I dealt with when I was attending your centre for 6 months (once a week for 6 months).

Ken Stewart Family Centre as seen from Cliftonville Road from Google Maps Streetview

Image Description: Ken Stewart Family Centre as seen from Cliftonville Road from Google Maps Streetview. It is a brown pebble-dashed building with a lot of cars parked in front of it.

I barely remember what they look like. I remember there was a man with brown hair, and I remember that there were two women, and that I occasionally saw a psychologist type who was also a woman.

Every Thursday for six months I was picked up from my lower school (when I was in year three) and I was taken in a mini bus with a bunch of other children to your centre. There were large rooms for art on the ground floor, somewhere on the 2nd floor there was a soft play room that we all loved going into, there was another room for both play and assessments where individually we’d be sat down and talked to and asked to do things or talk about things on this floor. Right in the attic there was a very large play room and there was a toy phone and reading books, there was a toy doll house -and we were told the story (or read to each other the story – I can’t recall which) of the Boy Who Cried Wolf. There was also an outdoor play activity area – and sometimes we had picnics.

In school I didn’t fit. I didn’t have the language – I didn’t have the way to explain how I knew I didn’t fit – I knew that everyone perceived me as different – that I HAD to be different, but I didn’t know what the differences were. I was seven when you saw me and I still had no idea what the differences between me and my classmates (and the adults) were. I just didn’t get it. I couldn’t understand HOW I was different.

At the centre – I fit! I knew one of the boys from church- I interacted with difficulty with the other children there – but I liked them well enough and we interacted as necessary. We mostly played by ourselves alongside each other and were happy to do so – and sometimes we approached each other.

That’s what I had been told I was there to learn. I was told I was there to learn to play with others. I was told and understood that the whole concept of me being there was to learn to play with other children because I got bullied so badly at school and thus needed to learn.

I had no idea that I was actually being assessed for my autism. The other children there had already been assessed and KNEW its what they had. They KNEW they were autistic or had Asperger’s Syndrome. When we interacted with each other in the attic we even compared one time – a bunch of 6 to 9 year olds all describing some stuff to each other and going “me too” – like proper little adults.

I don’t know how you tested me. But I know you got it wrong.

See- when my six months was up – it was end of term, the children were all saying goodbye for the summer and they’d be back again – and I was all excited and saying I’d be back soon and I WANTED to be back and to interact with them – they were my friends. Except you said no.

I remember saying I had the same thing as those children and I remember the man saying that I didn’t and so wouldn’t be returning. It was a massive blow.

I don’t know how it affected by mother – but for me – being told I DIDN’T have what they did, and I wasn’t coming back felt like a massive whump. I wanted to cry, I might well have done, I felt it was wrong and I was very upset. I wanted to come back, and I had belonged, wasn’t being bullied, had friends and now I was being told I DIDN’T belong.

I knew you were wrong. I knew that you got it wrong.

You had me for 6 months – and you were wrong. You were trained professionals and you got it wrong.

So I was sent back into normal school. And the bullying got worse. I had to leave the lower school you’d been picking me up from because a teacher had seen a parent telling her daughter to push me into the coat pegs. I went to a different school were the teaching was fantastic from the Year 4 teacher (I only got half a year with him) but where I as accused of being racist where I wasn’t and had boys deliberately smear dog poo on my dress.

I went to middle school and was bullied badly. I had my nose broken. I developed alopecia and my hair started to fall out in year 5 (when I was 10 years old). I would have girls from the year below me when I was trying to read quietly in the corner of the playground come up to me and sing “U-G-L-Y” at me.

I grew up, knowing I was different, having it become more and more obvious and with the bullying getting worse and worse. My mother worked at a special school – and one day had to bring me into work with her.

The other people that worked with her, the ones that had insisted her daughter couldn’t POSSIBLY be autistic and not in a special school instead of in mainstream school… all went up to her afterwards and said: “Wow – you were right – your daughter IS autistic.”

They got that from 2 hours. 2 hours where my mother came in, did her hours worth of work as a lunchtime supervisor, wrapped up and went home with me. I played with the other kids there, I fit with them nicely and they welcomed me and we got on just fine for that hour or so that I was there.

They saw in 2 hours or less – what you missed after 6 months of weekly sessions where I was in your care for 2, maybe 3 hours at a time.

The difficulties that my family and I had while I was a teenager were magnified because they didn’t KNOW for certain that I was autistic.

They felt it very strongly, but you had said no, they were uncertain. I wasn’t diagnosed, you had said no.

When I was 22 years old- I had to prove for social services and the court that I was autistic as I claimed to be.

I went for 6 sessions with a clinical psychologist who interacted with me. She phoned my family and had interviews on my background. She studied my answers to questionnaires and we had interviews and so on. There was even someone else doing training to observe some parts of my case.

I was diagnosed.

Asperger’s Syndrome. Absolute DEFINITE – No doubt in their mind at all.

I was given pamphlets to see what limited supports and things they could do for me now post adult-diagnosis of my condition.

You. Were. Wrong.

6 Months. And. You. Were. Wrong.

I get that everyone makes mistakes and that sometimes people slip through the cracks.

I get that because I didn’t have any kind of a diagnosis it wasn’t like schools to give me any REAL support for my difficulties. They couldn’t afford to hold my hand through the things I struggled with – I had to buck it up and learn like the rest of them.

I understand that my family were at the end of their tether. They knew something was wrong, didn’t know what – and they didn’t know for certain. I could have just been playing them and they didn’t know what to be strong on and what to make allowances for. So it damaged our relationship to a degree because we just didn’t understand each other – and I was getting more stressed and depressed because I didn’t fit right, and I was making my family upset with me.

I was making my mother’s depression worse. I was just wrong.

I get that people make mistakes.

But it could have been prevented if you hadn’t.

The MULTIPLE suicide attempts I made during my teenage years MIGHT have been avoided had you NOT gotten it wrong.

(They might not have, I’m willing to accept that’s a possibility).

It has taken until I’m in my mid-twenties for my family and I to really start clicking, seeing eye-to-eye with each other and develop proper coping strategies. To read up on all the things related to my condition and do the check lists – to find out what works for me and what doesn’t.

We still have mistakes that are made and awkward moments and still get angry with each other sometimes. There are still times when we mess up -but there is more understanding now. Forgiveness is a little quicker. The learning curve on both sides becomes slightly less steep.

But you were wrong.

Think of how much more progress we might have made, had my diagnosis been 18 years ago, and not 3.

You were wrong.

And I’m still kind of mad at you for that.

Every time my mother bursts into tears because she didn’t know then what she does now – and all the time we lost…

I’m kind of mad at you for that.

6 months. And you got it wrong.

Not-Yours-Definitely-Mine,

Becca.

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Filed under autism, family, human, learning, mistakes, past, personal

To Hell With Your Experience Cut Off

Originally Posted on “Rages and Random Thoughts” (my personal blog on that site) on Quora.

Well, blast, bugger, damn and as many expletives as you can think of or muster.

I’ve mentioned, somewhere, that I’m a member of the UK Green Party – it’s the only political party I’m a member of – and while there are some policies that personally I think should be revisited on the grounds of “lets actually use information on technology used in this decade and not 40 years ago – because being informed is never a bad thing”- I’m still rather dedicated to a good deal of it’s policies.

I’m also staring Job Seekers in the face when my son turns 5 next year and I am DREADING it – I’m truly, to the centre of my soul and heart – terrified. I have to be able to have some energy for taking care of my son, and doing all the normal things you have to do in a day takes up quite a lot of “spoons” for me (sapped out of me by my autism and depression). I have been to work before – I worked in a dry cleaners and what happened was that I would come home, every evening, and be so exhausted I just fell asleep (generally on the sofa) and couldn’t move until waking up in the early hours of the morning so I could do it all over again. There was literally not a scrap of extra energy for anything at all like house work in me. Some days there wasn’t even enough for getting food.

The thought of having to try and do that while I have a child to take care of stresses my mind beyond all reason. It keeps me up at night- it causes me to break down in tears at random, I’ve even had the shakes (convulsive panic attacks that I had a good deal as a teen) brought on from it.

What is even worse than that is going to the job centre every two weeks, sitting in a crowded building, (while having to wait while standing up which hurts my legs because I have intermittent issues with my knees), sitting across from an “adviser” (who proceeds to type one finger at a time in a fashion that just makes my touch-typing fingers itch uncomfortably), having to fill in a diary and show it to them proving I’m looking for work…

Work that either I WON’T be suitable for (physically, mentally, emotionally – or without putting myself and my son at risk; which I’m not allowed to apply for), or doesn’t exist – or isn’t for someone with my lack of experience/qualifications (which again I’m not allowed to apply for – as it invalidates the process and can get me sanctioned).

I specifically – if I’m going to manage at all – need a job working from home. I’ve tried an environment where I’m around people closely or requires some sort of day-to-day, face-to-face interaction, as well as a walk/commute – and I cannot balance it and my REQUIRED home life (of house work and doing all those things with Kai that I need to do to make sure he’s happy, well rounded and fed).

I know this. I’m not talking out of my ass. I’m not work shy. I WANT to work – I DESPERATELY want to work and have a decent job or non-benefit income. I spend my life feeling utterly and inexcusably pathetic, stupid and worthless for being on benefits. Stressing week to week about how I can juggle everything to afford all my bills and what little pieces of life require money but make life even vaguely tolerable. There’s not a week or even two days that pass by without me reading, seeing or hearing about how awful, terrible and worthless scum I and others like me are for being on benefits – these drains on the poor tax payers.

There have been some points, within the past 4 years, when this stress, fear and feelings from being on benefits and the utter hopeless feeling of trying to get a job I can actually do in this job market – has brought me to the brink where the only thing stopping me from slitting my wrists is the fact that I don’t want to do that to my son and mother.

Excuse me a minute I need to stop crying so I can see the screen properly.

I will do anything – ANYTHING – that I can, and will get me in a job from home that will pay all my bills, rent, council tax and allow my son and I to be truly independent from the state.

Recently in the Green Party Newsletter they had an opening for an admin assistant. One that could be done from home, and even advertised that it would either be from London OR if possible – from home.

Admin Assistant – That’s PERFECT for me. It plays to all my skills that I’ve built up over the years. What skills are necessary that I have not refindly polished entirely my grandmother and mother are both trained in and COULD help me/teach me to a high standard.

I did the work experience in school as an admin assistant at a small consultancy firm when I was 13. I got all A’s on my sheet, I was the FIRST assistant they had who had done the filing they gave me both properly, without supervision AND taken OUT the personal files that were just the boss’ and not the company’s and thus shouldn’t have been in those papers – and I walked away from my two weeks… with two job offers from them (unfortunately there was an issue with one of their other employees not being able to get a background check to work with a minor long term – so those fell through).

But when I saw it – I couldn’t believe it.

3 days a week, from home, my DREAM “I’m-fully-capable-of-doing-this-I-am-the-shit-at-this!” job for £20-25,000 a year…

And it requires 5 years of experience in this role, experience in Green Party local or regional functions, experience of managing volunteers – and they desire quite strongly a university degree.

I was shattered. Angry, upset, broken and it just made me break down into tears all over again as if I was right there -staring at a Job Seekers adviser and having to explain why I will continue to be worthless scum for yet another two weeks, praying to all the gods and goddesses that will listen that they don’t sanction my benefits and leave me and my son starving.

It was like I was back to being a teenager when I would get an application form for a shop assistant job and discover the form stating that I absolutely MUST be in work already and under no circumstances would they accept applicants who were out of work. Desperately scrabbling to get some sort of experience under my belt, anything – anything at all – that would get me into the job market.

If I’d of had ice cream in my apartment this afternoon and not been in such desperate need of a grocery shop – it would have been all gone by the morning after this.

Unlike my not-partner Link, I’m just not comfortable applying for this job on the “it doesn’t hurt” basis. I know that they will reject my application out of hand. I know that I don’t have two referees to point people to (since the company I last worked for as any sort of long term employee – bit the dust 5 years ago). I also know that employers are often MORE firm about their requirements when they say “the successful applicant WILL have” – and will not be swayed by my sob story. It’s a given that there are people out there in the Green Party who have all  – if not a massive majority over me – the skills that they are looking for to fulfill this position who are jumping at the opportunity.

So – if you don’t mind -I’m just going to sit here, cry, feel shattered and worthless and get more and more pissed off at my phone company for having a bad net connection they’ve not fixed on my line which means I can’t entertain myself with Netflix.

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Filed under benefits recipient, human, jobs, personal, politics

#WalkinIssysShoes [Reblog]

An incredible insight and mirroring my own prior concern as to what Issy may have gone through and would, understandably lead to outbursts.

Reblogged from http://ischemgeek.wordpress.com/

ischemgeek

Trigger warning: Discussion of ABA, quiet hands, whole body listening, etc.

I’m going to ask you to do something for a minute. Stop moving. Don’t scratch that itch in your left ear. Don’t shift your weight. Don’t frown with concentration. Don’t blink too much. Don’t yawn. Don’t stretch. Don’t fidget.

Don’t have a loud body.

Watch the clock. Has a minute passed yet?

Okay. Sticker. That wasn’t so hard, was it? Again. Two minutes this time. We need to be table-ready before anything else.

Oh, you moved. Quiet body. Sit still, don’t do anything. Two minutes.

Feel how you’re aware of how much you normally want to move. Feel frustration because you know you’re not allowed to.

Don’t frown. Happy face means happy days. Quiet body. Still. Two minutes.

Notice how it feels like you’re being set up to fail. Who doesn’t move at all?

Quiet.

Still.

Two minutes.

Think…

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Filed under "matyr moms", #walkinissysshoes, aba, autism, autistic self advocates, behavior modification, human, reaction, reblogged

Topically Dying Down

This is starting to die down and the next drama is probably just on the horizon – but I felt the need to write the post now.

One year and one month ago a “mommy blogger” Kelli Stapleton attempted to murder her teenage autistic daughter Issy Stapleton in Michigan. Her daughter had just finished a 8 month residential ABA program and her “positive” reaction to the ABA therapy at the residential program lead to her release date being bumped up 2 months from November to September. Some of the plans in place around schooling once she was home were scuttled because of what the “mommy blogger” in question believes was an altercation between herself and one of the school staff that would have been involved in the plan fairly instrumentally. Apparently after only a few days home the girl’s aggressive behaviors were starting to flare up again and the mother decided that there was absolutely no other option than to tell her daughter that they were going camping, driving them out to a wood, lighting grills in the van while they were still in the van and letting them both die of carbon monoxide poisoning.

Kelli’s plan was foiled when the van and the two occupants inside were found before they died, rushed to hospital and given emergency medical treatment. The daughter had to be put under a 3-day medically induced coma and there is indication that she has possibly had some brain damage from this incident.

A lot was said at the time by both the “mommy blogger”‘s friends and by autistic self advocates. There was the typical media coverage for such an event where the mother was described as a desperate woman driven to extreme measures and the comments sections filled with bile and calls for eugenics or completely sectioning off autistic people from the rest of society. Understanding and sympathy poured out in floods for the “mommy blogger” from some people. While anyone who expressed severe distaste or even so much as suggested that this wasn’t a “understandable or sympathetic” event – that there was only one victim – the daughter – were told that they were too narrow minded and needed to put themselves in the mother’s shoes, they were rejected and considered either cold or deliberately clueless/ignorant.

One year later, her charge changed from “attempted murder” to “1st degree child abuse” (the thought process on this apparently being that the prosecution would not have to prove her intent to murder her child, even if it seems fairly open-and-shut that that was what was happening, merely show that she was doing something that she was committing an act of child abuse which may also affect her future chances of interaction with her daughter). She was sentenced to 22 years maximum, with 10 years minimum until she could possibly have parole, her year already in incarceration would be taken into account – so in 9 years time this woman will be up for parole – and if by some chance she doesn’t get parole between 9 and 21 years time – she’ll be released in 21 years time. Her daughter will be roughly 35 years old then.

What caused a recent resurgence on this incident was the fact that last month Dr. Phil did a two part interview with the mother in jail, interviewed her friends, interviewed another mother whose child who had similar problems (a mother who happened to be friends with the “mommy blogger” who tried to kill her daughter, and had even been helped by Kelli in getting her son sent to a residential program) and read out a statement from the father.

It took me a month to “gather the spoons” and to also track down the episodes to watch on YouTube. About a minute into watching the first of the two part interview I immediately regretted my decision but was now trapped along with the programs and my own morbid curiosity on this.

Other autistic self advocates may talk about how sick they felt about the show. They have already railed against Dr. Phil for his insensitive and almost inhuman approach to autistic people in general, his overtly sympathetic approach to the mother and the victim blaming of the young girl who was almost murdered.

Took me a little while to really figure out how to verbalize how I felt about everything I saw on the show, and from reading Kelli’s blog and twitter feed like some other autistic people have. My various concerns that I felt about what I watched and read.

Like the fact that for the entire interview nearly every time it came up Kelli refused to see, state or even acknowledge to a degree that what she was doing and what she was trying to do was murder/killing. She remained emphatically insistent that she saw it as merely moving to a different address/zip code with Issy – with the address just happening to be in “heaven”. This speaks of an extremely unbalanced mind – and while that could at best be considered predictable, what is more heart breaking is the amount of people who say they understand, sympathize and might even do what she did were they in her shoes – the people that identify with the product of an obviously unstable mind.

The worrying, if predictable, aspect of the show were they spent an entire episode, plus 5 or more extra minutes into the next episode solely on Kelli, or talking with Kelli’s friends – where in they concentrated on and spent a great deal of time expressing concern about Issy’s outbursts of violence and how they believe that these will now be focused on Issy’s sister now that Kelli is in jail. There was a impression from these friends of Kelli that things hadn’t improved at home since Kelli had left and their “concern”- despite a long-involved reporter, video evidence and the father’s own statement stating that Issy had improved.

I was concerned to discover that the facility that Issy was staying in was an “evidence-based ABA treatment facility” where they would pay Issy tokens for having “quiet hands and quiet feet” so that she could then exchange the tokens for “iPad time”. I was equally concerned by indication in Kelli’s blog that she might have been subjecting Issy to like treatments from extremely early on (they had done early intervention a lot which had involved long travel periods to get to a behaviorist) – and that Issy’s violence developed when Issy was a little older – I wonder if perhaps the violence started as a direct consequence of blocking off safer and less harmful behaviors, but there is no way to know without having actually been there to see it.

I was slightly thrown when Issy’s father’s statement stated he wasn’t going to appear on the Dr. Phil show and that really the show needed to focus on Kelli because it was “Kelli’s story and about what happened to her”.

So much of Kelli’s blog, twitter feed and the show focused on the impact of Issy’s autism on Kelli and other family members. It was about how these behaviors would affect her siblings and mother. About trying to change Issy to fit with them – rather than change them to fit with Issy. I’m sure that given all the hours and money they put into intervention and treatments for Issy and all the fundraising they did in efforts to get her into and kept in the residential program that they were more inclined to think that it was for Issy – but whenever I look at it – or whenever I look at it with someone else – it really is more about changing the girl to fit them – they changed their routines and lives massively… in an attempt to force Issy to be able to one day fit who the family wanted her to be.

Kelli comes off as any other “matyr mom” when such arguments and clashes happens enough for these women to come out of the woodwork – for their insular blog circles to come to light within the larger autistic community. One of her tweets was a deliberate response to autistic self-advocates, basically telling them to get out and how wrong they are (which is average of “matyr mom” mentality) – accusations of autistic self-advocates being too focused on themselves rather than on the effects of having an autistic family member on the family as a whole. Of their washing over and ignoring members of the “hard to love club” and acting like violent autistics don’t happen (except I’ve never seen any autistic person, self advocate or otherwise deny that there are violent autistics – only argue against the stereotype of us being all violent which is massively untrue – a good deal of us aren’t).

One of Kelli’s friends wants to know where the people who have hashtagged #JusticeforIssy were when they were trying to raise funds to get and keep Issy in the residential therapy. Why we weren’t calling for more services in the months before Issy was killed.

Well – we were there. We did and do call for more services and recognition and accommodation every day.

We were there telling you that ABA (or perhaps more specifically IBI therapy) was traumatizing and that members of us were left with deep PTSD as a result of such therapies and were trying to suggest other therapies. Getting ignored for it most likely, because I see us getting ignored now.

We were there saying all the same things now as we said then because the evidence is right there in Kelli’s blog and twitter history that we were there and she was responding to us negatively.

Autistic self advocates frequently ask parents of autistic children what they would like for their autistic child – and some of them just solely focus on wanting their child in ABA (which lots of us don’t support for obvious reasons) or to be potty trained (which we can’t make happen) or for more services for families (which is not for the autistic child but for the families).

We were there, but didn’t agree with you – and so you ignored us. So accusing us of not being there back then is a lie. You aren’t asking us why we weren’t there back then – you’re asking us why we didn’t support and agree with you for what you wanted back then even though our position hasn’t changed between then and now.

Just because someone doesn’t agree with you – doesn’t mean they aren’t there.

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Filed under "matyr moms", aba, attempted murder, autism, autistic self advocates, human, reaction

Shouldn’t It Go Without Saying?

Hello and welcome to my new blog!

All of you whom know me well and are thinking to yourselves “Oh gods – not another one – shouldn’t you be concentrating on actually keeping a blog alive rather than just creating new ones all the time?” you can find tea and biscuits to your left and are asked politely to shush. I’ve not abandoned my blogs on Quora or my other word press blog (Hawk Vs. House), this is just something a little more general and a little more free to express myself on. Here I’ll be talking about my autism, autism in general and just my daily life – less focused or restrictive in subject and more free flowing.

To the rest of you, whether you are new or know me but not ever so well (and even if you know me well but are willing to read anyway) let us begin.

Why is the name of the blog: “An Autist Human”?

Shouldn’t the fact that autistic people are human be so obvious that it can go unsaid?

You’d think.

The painful fact however is that frequently members of the autistic community are having to remind people that we are in fact human beings. Not robots and not wild animals.

As I sat in the car talking with my grandmother (or more closely – at my grandmother and occasionally letting her speak – I tend to dominate conversations with my loved ones not because I don’t want to hear what they want to say but because there’s so much I want to share with them going on in my head I just blurt it all out), I mentioned to her how there had been a falling out between autistics and self-proclaimed “martyr moms” on a online community page and how the “martyr moms” had stated that even if ABA was abusive, which given the number of autistic people left traumatized or with long-term PTSD due to their experiences with ABA I’m inclined to say that it is, it was necessary because they needed to control “animalistic behaviors”.

My grandmother and I came to an agreement.

We are in fact animals. In the sense that all human beings are animals and all autistics are human beings (exactly the same as the “martyr moms”). The problematic aspect of having ones behavior be classed as animalistic and being described as animals by “martyr moms” is that they do not mean human animals and they are asserting distancing language that tries to imply that we do not have the same rights or characteristics to be able to identify ourselves as human. “Martyr moms” are trying to give the impression that autistics like their children and the adults with autism that they find all over the internet are not of the same species by virtue of perceived behavior.

They, and a vast swathe of the public, need to be reminded repeatedly – that the only animal autistics are – is human. Just like them.

This is why I chose the title of the blog that I did. It is to act as a constant reminder for as long as anyone is on this page and reading my words – that I am in fact human.

And that really needs to be ever present in people’s minds when we discuss topics. Because it’s important.

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Filed under ableist language, autism, beginnings, human, problematic language