Archive for the ‘Sensory Integration Disorder’ Category


Last week I had a neurology check up. I love this guy. He took it very seriously that I had a migraine that was on its ninth day, and showed no sign of alleviating. I’d been taking my daily med religiously; I’d been taking the Imitrex when it got out of control. I’d even been taking Advil on occasion in order to make it through work. I told him that I’d missed two days of work in spite of it all, and wasn’t sleeping even on the weekend.

He prescribed Prednisone, which he said would likely leave me feeling wired like after having way too much caffeine. He said not to take the Imitrex with it, because the efficacy of the Imitrex would be non-existent while on the steroid. I should feel better after the 2nd or 3rd day, taking 5 tablets the first 3 days in the morning; then 4 tabs; then 3; and so on.

I started the Prednisone on Wednesday of last week. I’m feeling “better” but the weather we’ve had hasn’t entirely helped. I’ve had restless sleep thanks to pain, which of course hasn’t helped. Over the weekend any rest I attempted was interrupted by the girls, the Mister, or Leo calling for his Mama. That dog likes to wake everyone up by 7:30 am. If I’m not downstairs by 8:30 am on a weekend he calls me specifically, with this whiny barking that gets urgent, so I end up having to go downstairs to let him hug me. Yup, he’s a hugger. I had to train him to be a polite gentleman dog and hug “properly” so that he wouldn’t knock me down. Goober.

I think that if I can get some long, uninterrupted sleep while on the Prednisone, it’ll work much better. The cats like to take care of me when I’m in bed, so they won’t be a problem. It’s the rest of the clan. 🙂

I went to work today, and I’ll be honest, I should have stayed in bed after the kids got on their rides to school. The Prednisone isn’t wiring me up, it’s making me sleepy. Neat trick.

What worries me at the moment is that if that damned Trumpcare bill passes? Migraines aren’t covered. I could be denied healthcare coverage simply for my migraines. Forget everything else I have to cope with. Migraines can keep me from any sort of healthcare insurance because the bill, if passed into legislation, will allow insurance companies to deny me coverage as a pre-existing condition. That means out of pocket if I see my neurology; if I have to go the emergency room for debilitating migraines that only the hospital can handle; for any of my migraine control medications. That’s thousands upon thousands of dollars a year. If they deem me suitable to cover at all, migraines alone could raise my premium thousands upon thousands of dollars a year.

Just the migraines.

I’m not talking about a little pain in the head. I’m not talking about a headache that some rest and avoiding sex for a night will take care of.

I’m talking about truly debilitating problems that are neurological in nature. Migraines are painful in the eyes, behind the eyes, in the top of the head, behind the head. They cause vision problems. There are sparkles, floaters, auras in front of the eyes. There’s tunnel vision. There’s blackout vision, where nothing is visible at all. There’s vertigo. There are auditory problems, sometimes a blocking of the ears and sometimes hypersensitivity. There can be auditory, visual, tactile, and olfactory hallucinations. Any combination of these symptoms can cause nausea, and vomiting. Fever can occur during migraines. Difficulty and slurring of speech can occur. Inability to walk and stand upright, or even to sit. Light sensitivity. Skin sensitivity.

There is a complete lack of function. It’s debilitating. Literally debilitating. The worst of a migraine is like having a seizure and stroke at the same time. It takes a lot out of you physically and emotionally. You want to scream, cry, beg, plead, but you can’t even think straight let alone speak. You’re forced to ride it out.

Luckily, most of the time mine have been under control by taking Topomax daily. I take the Imitrex for breakthrough migraines that need to be put under control when Advil doesn’t work. After a week, more than that, when that didn’t work, I finally needed to figure out what to do with my doctor. And if this doesn’t help, I don’t know what the next step is. But we’ll get there.

I’ll only get there if the current law, the AHCA, remains in place.

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I really need to write an entry about managing my spoons per day, because at the moment I’m having trouble leaving myself enough to even get through until 4:00 p.m. during the school week.

I know that I need to recenter myself, refocus, and remember to simplify. I need to use the tools at my disposal.

I need to remind myself of how to do those things and what those tools are.

Before I can even write that blog… I need to take a big breath. In through the nose to the count of five, with the eyes closed. Pause. Out through the mouth until all of the air is gone. Pause. Breathe in through the nose to the count of five. Pause. Breathe out through the mouth until all of the air is gone. When you do this breathing exercise, think of nothing except the breathing. Focus and direct all efforts on your breathing. Do this five times without rushing the process. Keep your eyes closed, and don’t allow outside distractions, such as children or spouses but most especially your phone to interrupt.

This exercise takes as long as it takes. Do it twice if you need, but this exercise will force your brain, body, and anxiety to relax. Bringing in oxygen and forcing out thoughts does wonders.

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I’ve been excited about this news: On October 1, 2015, fibromyalgia was finally officially recognized as an official diagnosis in the new ICD-10 list of codes being adopted across the U.S. This is the beginning of the medical community being forced to take a look at what Fibromyalgia sufferers have long known: that what we endure is a real medical condition and is biologically based deserving of its own unique, individual, singular diagnostic code.

We are now, in the new system, able to use the diagnostic code: “Fibromyalgia (M79.7).”

Until now the ICD-9 list of diagnostic codes has NOT listed a specific code for Fibromyalgia. Instead doctors have been using “Myalgia and myositis, unspecified (729.1),” which includes any disorder causing muscle pain or inflammation. As we sufferers have long known, muscle pain and inflammation are a big part of Fibromyalgia but are only part of it, and there is so much more to this disease. It deserves much more than a generic and unspecific terminology. It’s sort of like PDD and PDD-NOS (Pervasive Development Disorder/Not Otherwise Specified), getting to call itself Autism officially diagnostically.

Now the ICD-10 is out; freshened up with a new coat of paint with modern colors, track lighting, and levered door handles. That formerly dimly lit room now opens into a spacious room with plenty of windows, soothing shades of purple on the walls, providing more opportunities for funding and services from more sources.

There’s hope that we won’t be viewed as doctor shoppers, lazy do-nothings on welfare, and feckless drug addicts desperate for our next fix.

We can point to this code when we go to emergency rooms that haven’t caught on yet and look at us with knowing looks when they hear the word Fibromyalgia, even when we tell them that we want to find out why our appendix is hurting and if it’s infected and we’re not interested in pain meds. That in fact we stopped taking the pain meds in order to figure out where a particular new pain was coming from so that we could describe it and see if it was causing additional symptoms. That we would like a CT Scan, X-Ray, MRI, blood tests, urine tests, stool tests, anything at all to figure out if we’re going to have a burst appendix or gallbladder removal or if it really is, in fact, the ridiculousness that we live with daily thanks to Fibromyalgia.

There will be changes in the insurance industry with “Fibromyalgia M79.7” as a diagnostic reason for particular tests and medications to be ordered.

We can inform friends and family when they ask what Fibromyalgia is and they’re interested in looking it up.

It’s vindication.

You can’t see me smiling right now, but I am.

What’s ironic to me is that the Federal Government was ahead of the medical community on calling this one. Fibromyalgia has been considered a Federally accepted disability for Social Security Disability claims since 2012. Why did it take over three years for the health care industry to catch up?

 

Source: The Health Care Industry Finally Recognizes Fibromyalgia | National Pain Report

 

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I survived another birthday. I survived another year. I survived the changing of the leaves. I’m surviving the bipolar change in seasons so far. I’m surviving working.

I’ve been blessed to see my daughters grow and spend time with my loving husband.

I feel as if I’ve been able to begin healing relationships that need it, but I know there’s room for improvement. I know that I need to put more effort into additional healing, additional relationships.

I’ve just looked back on what I’ve written. It’s odd how I’m using the language, “I survived.” It’s odd that I chose to write about that, using that language, before I wrote about my family and relationships. Is that what pain has done to me in this past year? Has it really progressed that far again? I was going to write about something else but this probably tells me more about myself at this very moment than anything else I was planning to write.  That’s a little bit jarring.

This post isn’t at all what I expected, so I think I may need to come back to the subject later. How odd. Forgive me.

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Before I begin, I want to take special care. If you’re an autistic reader and you grew up in a hostile household that is or was unsupportive of your neuro-diversity, you may not want to read further; I don’t want this post to take away too many spoons for the day or the week from you.

There’s a “thing” I saw a few weeks ago that, at the time, I wanted to rant and rave about immediately: An anti-autism page run by Mommy martyrs.

I did but I deleted the rant.

Instead I chose to let this entry marinate for a while to see if I could come to terms with any of it. I don’t think I can. What makes me angry and saddened is the fact that I feel this way as a non-autistic parent: how much more horrifying is it when an autistic individual comes across Mommy Martyr pages?

The Autism Awareness movement has moved headstrong into an Autism Acceptance movement with such ferocity and vibrancy that has so much more to do with the self-advocacy of autistics than it does of their allies and advocates. Isn’t that always the way? Who better to know what autistic people need than autistic people?

Let’s get something straight: It’s much more than an Autism Acceptance Movement. It’s an  Autism Civil Rights Movement. It’s part of the larger Independent Living Movement, one that’s been going on for over five decades.

Goals include forging new, positive attitudes about Autism by dispelling myths; focusing on the positives; teaching others that the challenges can be dealt with and handled with input from the autistic person; educating the general public; educating people who are new to the diagnosis, and parents that are on the cusp of receiving a diagnosis for their children; not putting the onus of education onto autistic people and their families. We need to bring forward new studies but most importantly showcasing the thoughts and self-advocacy of autistic self-advocates. Who better to know what autistic people need than autistic people? Who better to know how they feel and felt growing up? Who better to know how Autism can change from toddlerhood through childhood through teenhood and adulthood than autistic people?

In other words, change the conversations surrounding Autism. Let actually autistic people be the driving force of the conversations. The conversations shouldn’t ever be where autistic individuals have to justify their existence and parents have to justify their pre-natal choices or how they parented during infancy. Parents shouldn’t have to justify shunning the fear-speech and fear-propaganda in favor of embracing their child’s Autism.

So yes, I stumbled into a Facebook group of Martyr Mommies and Daddies who were, to say the least and in the most kindly way possible, unsupportive of Autism. What I saw proves that there’s a lot more work to be done, far more than I realized. There’s not just misinformation out there but outright bigotry and hatred which I knew existed. I read and listen to the life stories of actually autistic people both online and in person. This was on a level far more bitter and sinister than I ever realized.

There’s still a lot of work to be done in getting people to recognize that Autism isn’t a mental health disorder or a psychosis. It doesn’t cause a violent predisposition. I could go on and on all day listing all of the things Autism “is not” but that’s not really what this post is for.

Breathe in, breathe out.

This post is about the terrifying way parents, caregivers, and would-be parents were speaking about Autism on what what supposed to be a support page… but really wasn’t a support page. It was a parent martyr page and yes, there’s a difference. It was an anti-autism hate group. There were things there that I can’t even remind myself to think about, let alone share in this post.

Parental support is when parents, sometimes of a particular specific group of children (possibly even adult offspring) need the emotional support from those who have similar experiences and understand their need to vent, ask questions, express sadness, share particular milestones, provide hope, provide a viewpoint from someone with experience to say, “It’ll get better,” or offer helpful resources. Is it rough being the parents? Sometimes. Sometimes often. But I remind myself, as do other parents that seek support, that during the times it’s rough for me, it HAS to be more difficult for her. It’s those times I can’t feel sorry for myself, those times I need to remain strong so that I can show her I’m here to raise her and show her how to become a grown up. That I’m learning with every experience I’m blessed to have with her.

Parental martyrdom is… well, it’s something else entirely. It’s a state of mind in which parents are mired in a muck of belief and delusion that their child’s disability wasn’t something that occurred to the child, but was an affront and betrayal to the parents.  The parents see no saving grace in anything about their child, although they may claim they cherish the child that was stolen by the disability which of course is what they “really” hate.

 

I was reading through posts, comments, shared articles, and I felt the worst sort of anxiety because I imagined my child reading what was on that page. I imagined my autistic friends and even acquaintances and consumers reading what was on that page. I wanted to protect anyone from reading that trash, especially parents and young autistic children about to get their diagnoses, from ever seeing anything on that page regarding the attitudes, opinions, pseudo-science, hate speech, anti-autism resources, fear propaganda and parent shaming… it just went on and on.

I felt twisted in knots realizing that most of the fiercest anti-autism anti-advocates out there are non-autistic parents of autistic individuals. These were parents and non-parents alike hating children: my child, others children, their own children, and the adults they would become under the guise of only hating their Autism.

Sound familiar? If you’re Christian it might: Love the sinner, hate the sin.

As a Christian woman I know it doesn’t really work that way. That saying is a cop-out. Hate is hate.

There were also those anti-autism anti-advocates who are scared to death. (I call them Frothers: frothing at the mouth in fear mothers) that their future children or their already-born children will “catch” Autism in some manner. They see Autism as some terrible, tragic disease that steals our children and has become a terrible epidemic.

On this particular page, Autism! Causes! and Autism! Tragedies! lurk behind every closed door, inside every shadow, within every single in-between.

There’s no such thing to them as Autism being natural or having any good qualities. None of them could account for any autistic adults that used to be just like their children that are now speaking or communicating successfully in other ways; holding jobs; dressing and performing other tasks that as children seemed impossible. In their minds, their children were stuck in an impossible snapshot, never capable of any sort of progress or… at least not the sort of progress that would make them appear non-autistic. As so many teen and adult autistic persons have had to endure, the phrase, “Those high functioning people with autism aren’t like my child, who will never _____.”

Anyone who showed any ounce of intelligence, reasonableness, positivity, and acceptance for Autism was called out as a troll and crucified even if they identified themselves as autistic. I knew it wasn’t worth it to join in to add discussion to try to add something reasonable or moderate, because they weren’t interested.

It had become group-think where they were calling for blood.

If there wasn’t blame there was criticism. It was a very scary page to be, very anxiety inducing, and would make anyone choose sterile bubble homes with in-home sustainable gardens that were equally sterile, drinking only your own sterile pee. Except even that has risks, of course. It went far beyond Vaccine Denialism, Anti-Vax, or Anti-Some Vax. Those seem tolerable compared to this vileness.

The entire purpose of the page was to assign blame of How Autism Happens because of:

  • problems in parenting;
  • parental genetics;
  • grandparents daring to raise their children the wrong way even though supposedly those were the Good Ole’ Days;
  • no one raises their kids the way they did in the Good Ole’ Days any more
  • damage to the Earth;
  • damage to genetics;
  • vaccine injury of any kind;
  • damage to all food and water supplies;
  • mom getting sick during such and such stage of pregnancy or just before pregnancy;
  • mom not getting enough or too much of whatever supplements;
  • mom or dad being too old at the time of conception;
  • mom or dad being too young
  • in vitro fertilization;
  • life-saving measures on a pregnancy that was only 6 weeks along;
  • not enough of this, too much of that;
  • stood near an old-fashioned TV too long;
  • eating food from a microwave during pregnancy;
  • ate food cooked on an electric stove;
  • ate food cooked on a natural gas stove;
  • went camping without checking to see if a bear took a crap nearby and the crap fumes didn’t include something unnatural that the bear ate (I SWEAR TO GOD);
  • that one time mom let the playdate mom prepare a snack;
  • the library has books filled with lead paint;
  • filled the car with gas instead of asking someone else;
  • slept too long, slept too little;
  • ate a single turkey sandwich;
  • ate meat during pregnancy;
  • ate vegetarian during pregnancy;
  • ate a hotdog;
  • drank a Coke;
  • ate food at a fair
  • ate that Cheerio off the car floor once
  • had a glass of wine before knowing about the pregnancy;
  • Grandma drank a glass of wine before knowing she was pregnant;
  • Grandma or Great-grandma had her children vaccinated and that’s caused genetic damage so it’s really inherited vaccine damage;
  • Dad’s shorts were too tight;
  • Dad’s vitamin deficient;
  • there were pets in the house;
  • there were litter boxes in the house;
  • the child didn’t play outside enough;
  • the child plays outside too much;
  • the child wasn’t wearing cotton through the age of diagnosis (no, really);
  • the child was wearing cotton, but it wasn’t organic cotton (seriously);
  • the wrong light bulbs in the house, the car, the school, on playdates;
  • not enough organic, all natural, blah blah blah glarg.

Parents who were asking for advice and help about various things, not just what they thought caused and contributed to their child’s Autism, were ganged up and shouted them down. Anyone viewed as showing real support, showing scientific research rather than pseudo-science or pulling a fresh new opinion based on nothing out of their, ah, nostril was a troll and part of the reason for the Autism “epidemic.”

This was a form of extremism I’ve never seen or dealt with.

That page made me fear using my own toilet and trusting my mom and mother-in-law to be in the same room with my children.  It was a Doomsday Page.  The only support was high-fives over sharing new doomsday information and how they’re the only ones informed enough to know where to find the newest or “best” pseudo-science or anti-science propaganda.

The only support was for the poor, poor individuals who ranted and raved, and the poor parents couldn’t save their own children but were trying desperately to save everyone’s else’s unborn child or shed light on The Cause.  It was showing only the absolute worst, most extreme of the extreme negative symptoms that may or may not have been due to Autism. Every single one of them was shouting the other down trying to be heard, trying to share the scariest most rewarding knowledge.

I can’t imagine what assigning blame or causing abject piss-in-your-pants debilitating fear is supposed to accomplish. Living in that emotional state can’t possibly be healthy for anyone. It’s constant fear, constant anxiety, and the amount of anger… it was astonishing.

Finding causes is very different than assigning blame. Maybe it’s semantics to some, but I really think there’s a difference.

Finding a cause indicates that one is looking at scientifically based proof and evidence. I would be fascinated to know if my hypotheses about which side of the family contributed most to my daughter’s Autism is correct. I would be fascinated to know just out of curiosity sake. But I also fear that science could be misconstrued or used improperly in the wrong hands. Finding a cause has possibilities of improving lives and reducing aspects that are disabling, which can mean improving services that are kind and humanity based.

Assigning blame is a vehicle of able-ism, guilt, and shaming and so there’s a hugely emotional component.  It bleeds all over the innocent and colors perspectives in an extremely biased way. Assigning blame and getting caught up in it is a direct lead into bigotry of disabilities and Eugenics. Those who assign blame are those most likely to take any cause found and use it in a manner that would extinguish valuable lives in an effort to improve their own. Those who assign blame are more likely to cause harm. Those assigning blame are more likely to cause harm if they ever find a legitimate cause.

I don’t know why I’m surprised to find a page like that, except that I suppose I believe what I tell my daughters:

Have hope, and the world can change as long as we educate people and will it to change.

It’s in my bones to believe and be positive. I don’t want to believe that our experience, my daughter’s experience, is only a microcosm, and her childhood is a rare thing being accepted completely and loved wholly. I don’t want her to have to believe that she’s lucky to have a mom who accepts her as she was born and willing to help her learn the ways she learns best. Shouldn’t that be a given?

I want to have hope that when it’s my daughter’s turn to set the horizon on fire, she can do it with as many paintbrushes as she desires and wear a rainbow unicorn horn as she does it. I want to know that more and more children, teens, and adults like her are having more and more experiences like her. She shouldn’t be unique in that way. Being loved.

It shouldn’t be unique that I believe pages like that are an aberration and that autistic individuals are a blessing. It shouldn’t be unique that she’s growing up without having to go to therapy for anything other than what her non-autistic peers would go to therapy for:

  • Mom didn’t bake apple muffins often enough, surely not enough in the summertime
  • Mom kissed me too much, and I hate the sound and sloppiness of kisses
  • Mom insisted that the money tree in the backyard didn’t sprout enough cash for all of the video games, chocolate, and Pokemon critters a girl could need
  • Mom wouldn’t let me be friends with the girl who bullied me and who stole my favorite toys
  • Mom couldn’t always read my mind, every second of the day even when she was at work and I was at school and I wanted more than anything for her to just know that I wanted her to pick me up so she could paint my nails

It shouldn’t be unique that when finding out there are people who think Autism is a bad thing, it’s a huge shock.

It should be shocking that people believe the negative stereotypes and refuse to educate themselves by seeking out others who validate their hate and narrow-mindedness. The bigotry should be shocking. So shocking, I think, because of the viciousness of it. No one held back their real thoughts there. No one cared who saw what they wrote. No one cared if in the future their child might stumble across their words as I had because it didn’t even cross their minds that their children would one day be capable of doing such a thing.

I won’t share that page itself. It doesn’t deserve attention. I just think it’s important to know that this viciousness is indeed still out there trying to undermine something beautiful.

I’ve come to rely on this quaint little phrase (I’m sure I’ve said it here before) that my Sweet Girl overheard me say once recently during the course of a larger conversation. I snagged it off of a meme a couple of years ago, so it’s funny to me how this was the phrase she approved of most:

“…and so in the middle of the doctor’s office, I shouted, ‘Being alive causes Autism!’ It just made me so mad.”

She giggled and repeated in a soft murmur,

“Being alive causes Autism. Mmm hmm. Yes.”

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I can’t tell you how much I appreciated this post from Asperger’s: Through My Eyes. It offered insights I hadn’t realized before.

Aspergers and Lack Of Awareness of Body Signals | Aspergers: Through My Eyes.

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I think it’s important to share the opinions of Actually Autistic people. I’m non-autistic, so even though I’m a parent of an autistic daughter, my opinion doesn’t mean quite as much as that of Actually Autistic people. Before I share my thoughts, this is a great blog entry, shared with permission, from Thoughts from an Autistic Vegan: What’s wrong with Autism Speaks from an Autistic point of view. I’d like to thank Autistic Vegan again for letting me share this.

Saturday, July 11, 2015

What’s wrong with Autism Speaks from an Autistic point of view

It seems everyone is aware of autism these days. I can’t think of anyone I have met, who has never heard of autism.  Autism Speaks has made sure that we are all aware.  Their latest awareness piece came in the form of an article in People magazine, proclaiming Bob and Suzanne Wright to be heroes, battling the autism epidemic.  Battling. Epidemic. The hate speech never ends with Autism Speaks.  It is as if they are unaware that Autistic people don’t want you to go to war with our brains.  My family became aware of our own autism, right at the same time that Autism Speaks was getting off the ground, and becoming a widely known entity.  So they made sure that we knew that autism was something to be afraid of.  My Autistic son was 5 years old in 2009, when Autism Speaks stated, “I am autism…. I work faster than pediatric aids, cancer, and diabetes combined.  And if you’re happily married, I will make sure that your marriage fails.”  http://autisticadvocacy.org/2009/09/horrific-autism-speaks-i-am-autism-ad-transcript/ Where are the help and the resources? OT services could be provided for families to get help with understanding their children’s sensory needs.  Communication devices to help people communicate more effectively with their families would certainly help many of us. No, fear is all Autism Speaks has to offer.   Autism Speaks raises millions of dollars with their pity campaigns, and yet, only gives 4% back to families in the communities. http://loveexplosions.net/2014/10/31/oops-they-did-it-again-autism-speaks-2013-financials-just-released/

My son was only 2 years old when Autism Speaks made a documentary called Autism Every Day.  This movie is a pity party for parents of Autistic children, the worst part being when a mom talks about wanting to drive her Autistic child off a bridge, while her Autistic daughter is in the room, and says she only did not do that because of her other, non-Autistic child. http://tinyurl.com/nnhveky These are the things that do the most damage.  Autistic children are murdered by their parents at an alarming rate.  Yet, in the media, which Autism Speaks is always at the center of, this is excused.  People lament the lack of services, think of the martyr parents, and shake their heads at the unfortunate lot in life to have an Autistic child. http://www.autistichoya.com/2013/03/honoring-dead.html In their most recent documentary, Sounding the Alarm, there is more of the same.  Over and over again, the message from Autism Speaks is that autism is an epidemic to be battled.  They don’t take the time to talk to Autistic people of any age to get their opinions on what services are needed, or what message should be sent to the world at large. Instead, they speak to weeping parents, and call for more services as they exploit Autistic people’s darkest moments for profit. They show a complete and utter disrespect for Autistic people in every action that they take.  Because of this, it is very difficult for me to tell people that I am Autistic.  I know it changes their opinion of me, because of the lies that Autism Speaks told them about people like me. No organization has done more harm to the community they claim to help.  It makes me sad that they are the leading resource doctors, therapists, businesses, and everyone else, looks to when seeking information about autism.  How can they be the leading resource when they do not even consult with Autistic people in any meaningful roles?  https://www.autismspeaks.org/about-us/board-directors It’s time for people to stop listening to Autism Speaks, and start listening to Autistic people.

 

This blog entry has several things going through my mind. First, I think I’ll let this marinate a little while for you guys to read. Then I’ll post my own thoughts. But first, please let me emphasize this for other non-autistic parents of autistic children: our children’s opinions on autistic matters including themselves are more important than our own. Who knows what’s better for someone than the people that are having policies and decisions and social discussions about them? I think this reblogged entry I just shared is one that we need to pay attention to, because it’s a common theme among adult autistic self-advocates. 

 

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