Wednesday, December 30, 2015

11 Things Parents of Children with Autism Should Know...Panic is Not Necessary.

In speaking with parents of children with Autism, in reading things about Autism online and in books, and in speaking with individuals that have Autism, I have noticed that a lot of the information shared about Autism can create at least a mild panic. (i.e. NEVER DO THIS! ALWAYS DO THIS! SOMETIMES DO THIS! DID YOU DO THAT? WHY DIDN'T YOU DO THAT??)

I am concerned, as others are, that this panic can lead to rash thinking and decision making. So...

11 Things Parents of Children with Autism Should Know...Panic is Not Necessary.

1.Your child doesn't appear to be the "normal" or "typical" child pictured on the back of the toy box/television commercial/cute video online.
All is well. Panic is not necessary.
Every child is different. That does not make them any less human, any less lovable, or any less of a child. Never let anyone tell you otherwise.

2. You have a funny feeling something is wrong in your child's development but you can't put your finger on it. Everyone else says it's just a phase.
This is a feeling to listen to and act on. Panic however is not necessary.
If you are concerned that your child is delayed in some way or something seems different, you have many options. You do not need to wait. You can speak with your pediatrician. You can call Early Intervention in your state. You can seek out an evaluation by a private therapist in the area of your concern.  It is never too early to start playful, engaging, respectful intervention if it is indeed necessary.

3. You've just been told your child has Autism.
This is not a death sentence. Panic is not necessary. Information and education are.
Read Engaging Autism by Dr. Stanley Greenspan. This should help immensely. Speak with professionals and take notes. Don't agree to anything in the moment. Write things down. Go home. If you have a husband/wife/partner/loved one/friend speak with them about what you have learned. Consider what resonates with you. Consider what feels right for your child and your family.  This is not a one way road. If you start in one direction and don't feel like it is right you can always go off in a different direction. On the other hand, you want to be sure that you are not figuratively traversing the map looking for a magic "cure" that doesn't exist. Which leads to number 4...

4.. You have been told x therapy will "cure" your child of his Autism diagnosis.
This is not correct. Panic is not necessary.
This is a twofold answer: First, anyone saying they have a "cure" for Autism is feeding you a bunch of hooey. There is no cure. However, one is not required, because second, your child is not broken or afflicted with a life threatening disease. . He or she has a brain based disorder consisting of differences in the structure of the brain, the function of the brain, and the processing of the brain. Your child does not need a cure. He needs support and therapy that will be respectful and effective. Does that exist? Yes. Is that frequently what's given/received? No. Which leads to number 5...

5. You have been told your child needs x amount of hours of ABA in order to "get anywhere" or he and your entire family will fall into a dismal abyss of hopelessness and despair.
This is not correct. Panic is not necessary. Information is.
There is no magic therapy and no magic number of hours of therapy. Each parent must decide, ideally in conjunction with caring, educated professionals who truly understand Autism, what the most appropriate first step might be. There are many types of therapies that can support Autistic children and their families. You must educate yourself on what is out there and what resonates and feels right for you and your child. If it doesn't feel right it probably isn't.
Important to note: ABA addresses behaviors, not their underlying cause. ABA addresses surface challenges, but not core challenges. It is not (as proven by studies) the evidence-based gold standard it purports to be. Are there other more effective, respectful, and family centered options out there? Yes. Will you readily hear about them? Probably not.

6. A therapist tells you she needs to work with your child alone so he will listen/sit/attend/work/
respond/speak.
This is not correct. Panic is not necessary. Action is.
You are the most important part of your child's life and his or her best teacher. The therapist should be not only providing therapy for your child, but also providing tips and suggestions for you in REAL-TIME so you can see what he or she is doing, so you can ask questions, and so you can see what you feel works for you to carryover and what does not. There is no reason why a therapist should ever insist on working behind a closed door without a parent present.

7. A therapist tells you your child just needs to get used to therapy and needs to "cry it out."
This is not correct. Panic is not necessary. Immediate action is.
Do not let the situation escalate to where your child is crying for you. . If your child wants you to stay with them and the therapist, stay. If they say "go mommy" or "go daddy" then go, but stay around, perhaps where they can't see you, and peek around the corner, or listen in so you can know what's going on.  And if for some reason your child begins crying for you and you are not immediately there, go to him. If a therapist tells you to leave, strongly suggest she or he instead see themselves out.

8. The therapist provides treatment as though they are a drill sergeant.
This is not correct. Panic is not necessary. Immediate action is.
Therapy must take place in the context of a respectful, affective relationship. This is how a child understands how they can begin emerging from their world to join ours, and it offers us the opportunity to join in to their world as well. Paraphrasing Dr. Gil Tippy, a renowned psychologist: We extend our hand and we extend the invitation, and we wait. We tell them come, come join our world. We here waiting for you. Come on over.

9. The therapist tells you your child can't learn until they can sit still/have quiet____.
This is not correct. Panic is not necessary Action is.
There is no requirement written somewhere that children cannot learn or engage if they are moving, or if they are flapping, or if they are spinning in circles. Children can pay better attention when their bodies are comfortable and they feel regulated. If flapping their hands makes them feel regulated, then flap on! Can it be challenging to work with a child this way? Sure! It can be. But that's what your therapist should have signed up for. To be able to work with children who present in all kinds of ways, with all kinds of different develpmental profiles and individual differences. . So do not let anyone tell you they can't "start" working with your child until they get your child "ready." That is a cop-out and a bunch of hooey.

10. Therapists speak about your child as though he or she is not there.
This is not OK. Panic is not necessary. Action is.
Your child is a person- a real, whole, complex person with feelings, emotions, ideas, and thoughts. Just because your child may not be able to yet express those in a way others understand, or just because your child may act a bit differently or not appear to be "there" does not mean they are not a real person, and it does not mean they are not listening. Respect your child. Make sure those working with him or her do the same.

11. Everything you're seeing on YouTube/Social Media/The Internet and everyone you talk to says your child is doomed, and so are you.
THIS IS NOT CORRECT. Panic is not necessary. A reality check is.
If the stuff you're seeing on social media and the Internet isn't working for you, stop looking at it. If your therapist doesn't support your child and doesn't support you in building a relationship with your child, speak to them and if need be, find a new one. Surround yourself with people that support you and your child. Listen to your gut. Feel out what's right. Educate yourself. If your child is old enough to share their opinion, listen.
And above all, remember that your child is  a wondrous, glorious little being with tremendous potential. His or hers is a life to be celebrated and enjoyed. Your child is no less of a child because they have Autism. And you are no less of a parent.



Thursday, August 27, 2015

It's September! Tips for School!


Happiness! Excitement! Worry! Fear!
Lot's of emotions can surround the first days or weeks of the school year. Here are some tips you may find helpful for your child or a child you are for.

For Younger Children (maybe even older ones too)!
If your child is concerned about starting school and their first day, you may want to give them a photo of the family, or of a stuffed animal or prized possession (a photo that you wouldn't mind losing) on the first day of school to keep with them. They can put it inside a notebook or have it in a pocket in their backpack perhaps. This can be very reassuring and also leaves out the possibility of losing the prized possession in school!

You may also want to get a heads up about what the classroom schedule looks like, and then share it with your child (i.e. first you'll have circle time, then play, then outside, then snack, and then school will be done for the day!)

For All Ages!
Parents or caregivers might want to pack a surprise note in a lunch box or snack bag. It's always nice to get a note from home, and if your child is too young to read, you could draw a heart, smiley face, etc. Sometimes a little reminder can mean so much!

Try to always make school a positive thing  but also try to acknowledge your child's feelings. You might consider asking "How do you feel about starting school next week?" and let them answer. Or if you know they are worried - "I know you're worried about starting school next week. What do you think we can do?" and try to problem solve with them.

If your child has trouble verbally expressing himself, this might be a great time to draw some pictures, or get out some play figures and see if he'll want to act out anything when your play figure "doesn't want to go to school" or alternately, "can't wait to go to school!"

Did you find these tips helpful? Have additional tips? Feel free to comment below!

Have a wonderful September! :)

Tuesday, June 2, 2015

Danger: Feelings Ahead

Autistics are not allowed to demonstrate emotion.
Period.
Well. Unless it is acceptable emotion.
Because not all emotions are acceptable when you are neurodiverse.

Did you know that?

I knew it.
But I don't get it.

If you're an Autistic person, you are supposed to remain stone faced (ironic isn't it?), unless you are imitating your ABA therapist or teacher modeling emotions for you, or you are demonstrating the "princess smile" on command. 

True emotions are not allowed to be experienced and expressed. They are not supported and encouraged as a way to express onself, support language development, connect with others, etc.

Instead they are taught, modeled, and then put on the back burner.

There are no allowable demonstrations of  anger, sadness, frustration, boredom, or delight. And certainly, when those emotions are demonstrated, there is no talk of encouraging and supporting self-regulation, while the child navigates whatever emotion there is.  There is talk of "ignore him" , "don't react", "he'll get over it" "he's such a weirdo, he laughs at everything."

These types of emotions are not only not supported, they are punishable.  Demonstrations of these emotions may lead others to say the Autistic person is not compliant, not listening, not "getting it", or perhaps is not "safe" to be around. (I did not know that expressing delight over a ceiling fan can be dangerous to others).

Still not clear on why....

If neurotypical people are allowed, never mind encouraged, to express ALL of their emotions (how are you FEELING? What's making you SAD? Why are you so ANGRY?), then why can't neurodiverse people?

Perhaps ABA providers and teachers are afraid to ask these questions.

Perhaps they are afraid that the child will express how much they dislike being in session.  Or perhaps they are afraid the child will express how much they dislike being made to do the same stupid task over and over again in the name of learning "skills." (i.e. touching their finger to their nose, which we all know is a critical skill to have as an adult.) Or, perhaps they are even afraid the child will express their horror at being disrespected and shamed on a daily/hourly/minute by minute basis.

All those expressions would be very sincere and honest.

ABA doesn't allow for honest and sincere.

So in summary....if you're neurodiverse, it would seem you lose the right to express yourself on your own terms.

I'm not clear on how that's ethical, fair, appropriate, reasonable, humane, or a host of other words.

Perhaps someone would like to explain.

Saturday, March 7, 2015

A Celebration of Emotion

If you are neurotypical (and perhaps a therapist, or a teacher, or a parent)
And you are lucky enough to know an Autistic,
Please remember:

If they are having a tantrum
or are having a great day
If they are twirling in circles,
and flapping their hands
If they are laughing out loud
or crying in the corner
Or if they would like to pick out every part of their lunch
and only drink liquids that are bubbly,
if they desperately want to be close
Or just want to be left alone
And if they don't feel comfortable making eye contact
Or if they can't stop looking at you...

Please be respectful. Please be thoughtful. Please be accepting of the uniqueness in everyone. If you are neurotypical, please remember EVERYONE has quirks and bad days and good days and everything in between too. Being Autistic does not mean that someone does not have a right to their emotions, with all the highs and lows and in betweens. No one should be forced to be "compliant" or be taught to smile. Life is a celebration of emotion, and having a diagnosis, of whatever type, should not mean that someone does not have a right to that celebration.

Respect. Always. 

Sunday, November 16, 2014

We're Still Here!

It has come to my attention that the last new post here was on August 28th!! The fall is almost gone! What happened?!

Well..

We are creating new programs for you, starting an email newsletter, participating in presentations and radio interviews, and so much more!

We are also accepting new clients right now for consultation, evaluation, or therapy.  Check out alphabetsoupspeech.com and find our contact info there!

We're so excited for what's to come and will be posting again soon! :)

Thursday, August 28, 2014

"This is What They Said He Needs"

40 hours per week of therapy
An intensive home program
An intensive school program

Congratulations. Your child is now in an ABA program. You're probably being lauded as an amazing parent truly working to help their child overcome their Autism and succeed.

You may have amazing intentions as the parent. You may think that you are doing exactly the right thing, and you probably have professionals around you that support and encourage what you are doing.  Of course you may doubt yourself a bit when you hear how intensive all this is going to be, but you think to yourself "This is what they said he needs."

When the people start coming to your home, they tell you that you have to leave the room and they have to be alone with your child so he's not distracted and clinging to you for support and comfort. You assume they are right, because they are the professionals. So you leave and he cries. And cries. And cries. And as the minutes go by your heart is starting to break, but you wipe your eyes and you think "This is what they said he needs."

When your child starts to figure out the deal, and starts crying as soon as the person comes to the door, you give him a quick hug and think "This is what they said he needs."

And when your child doesn't want to let you go, and is crying and screaming for you, you let the person take him into another room and away from you because "This is what they said he needs."

When your child starts to follow commands and say things on command, you think it might sound a little weird and robotic, but you remind yourself, "This is what they said he needs."

When your child wants to go out and play with you, and you say "We can't. We have to wait for the person" you may feel a bit bad, but you think, "This is what they said he needs."

When your child won't do anything without a bit of food or some reward, or when what he does is super scripted and automatic, you think it's not very natural, but, "This is what they said he needs."

When progress slows and he really isn't doing anything new anymore, the people will blame you and say you're not doing enough at home, or they'll tell you even more therapy is needed. And you'll feel shameful and guilt ridden, because "This is what they said he needs."

So you've got a situation where you're told you're an incompetent parent, your kid is presumed an incompetent learner, and everything is essentially your fault or your kid's fault. Sounds very  therapeutic.

This, my friends is the beauty of ABA, the most widely used "treatment" for Autism.

But there is an alternative. Instead of shame, guilt, grief, anger, and frustration, how does this sound?
  • Sessions that are rich in warmth, empathy, compassion, and respect. 
  • Sessions that encourage and support parental involvement. 
  • Sessions that presume all involved are competent and able learners. 
  • Sessions that do not force the child to fit into a mold, but rather the sessions are worked to fit the child's individual needs. 
  • Sessions that are built on motivation coming from the inside out, not the outside in. 
  • Sessions that are based on engagements, not separations, and sessions that work on the underlying challenges, not the stuff on top.
These sessions are based in DIR, not ABA.

Do you have a puppy with special needs? Probably Not. Do you have a child with special needs? Maybe.

ABA is for puppies. DIR is for children.

Get it straight. Get educated. Get moving on what your child truly needs. Not what other people "think" he needs.

Does this resonate with you? Leave a comment
Want to learn more? Contact me


 

Thursday, April 24, 2014

Comments Heard....

Comments/questions heard from other professionals over the course of the last few years:

1."She's so difficult to work with!"
2."Why aren't you doing ABA?"
3."Well if you placed demands on xxxxx he would stop responding, right?!"
4."That's nice that you're playing, but what about providing speech?"
5. "You're so quiet! Why don't you talk to her?"
6. "You talk to her like you're just having a conversation.  What good is that?"
7."Why aren't you teaching her to talk?"

Supportive...no?

Ahem...

1. Talking about how difficult/annoying/weird a child is while that child is sitting next to you (or near you) makes that child feel like  poop. It's disrespectful, unprofessional, and downright rude. How would you feel if I said "My co-worker (name) is SUCH a pain - I can't TAKE working on that project with him! Ugh!"

2. I'm not doing ABA because ABA sucks and makes most things worse. It's a band-aid and it can be harmful. If you want that sort of thing in your therapy sessions, have a ball. But leave mine alone.

3. Placing "demands" on a child doesn't make them learn anything any faster or more efficiently. It makes them usually want to back off and stop engaging and relating because you're creating a really high stress, frustrating situation. We're supposed to be supporting children through the therapy process, not making it more difficult.

4. We're using play as a means to create a relationship and to foster engagement and affect. This toy car means a lot more than just something to play with. It's a way to build the foundation that one needs in order to communicate with the world, problem solve, etc.

5. I am being quiet to give the child time to process what's going on, and to give them time to consider if they would like to communicate something. I am also giving myself time to consider where I need to go next. I am constantly assessing and re-assessing. Because children are dynamic. Not static.

6. Conversation is important. Conversation is back and forth, reciprocal interactions. It is listening to someone else and responding. It is sharing your thoughts and waiting for a response. Conversation in session is purposeful - be that to encourage spontaneous communication, to encourage circles of communication, to encourage fluency, etc. etc. Everything I do in my sessions has a purpose - I am not just speaking for the pleasure of hearing my own voice!

7. Speech therapy is not to be provided in a bubble! We should not be "teaching" a child to talk! We should be focusing on communication! Why would the child want to talk if they have no interest in communicating? I need to work on the foundations of relating and engaging so that the child wants to communicate, and I need to always respect the child and where they are in their own process. I will not figuratively drag the child into talking while they're kicking and screaming, just so I can say "Look, xxxxx can say "I want more please" in a robotic tone of voice.

So another way to frame the comments listed above into more positive statements/questions:

1."That child's individual differences are interesting, and sometimes challenging!"(NOT said in front of, or anywhere near the child!)
2."I use an ABA method. How does yours differ?"
3."It doesn't seem like you're placing demands on (name) - how are you helping him/her to learn?"
4."Do the play activities you're doing help (name's) speech?
5. "I notice you're frequently quiet. How does that benefit the child?"
6. "I notice you frequently seem like you're having a conversation with the child. How does that benefit them?"
7."How is your therapy helping this child learn to communicate?"

What are your experiences with "comments heard?" 

Monday, April 7, 2014

Guest Post: Leslie Lindsay, Parent and Author of "Speaking of Apraxia"!!!

I'm very pleased to share that Leslie Lindsay, R.N., B.S.N., author of Speaking of Apraxia: A Parents' Guide to Childhood Apraxia of Speech, is our guest blogger today!

Leslie's book is a wonderful guide for parents to navigate the complex, and often highly confusing, world of speech therapy for CAS. It is written in a parent-friendly format, and is comprehensive yet easy to understand.

Her article below is a great note to new and current speech pathologists.  Please read and share!!



SLPs:  Our Children with CAS Need your TLC
By Leslie Lindsay, R.N. B.S.N.

You won’t soon forget her.  The red hair and blue eyes the size of saucers will linger in your memory.  So, too will the fact that she is as fire-y and energetic as that copper hair that cascades down her back, framing her freckled face with possibility.  

And when you hear her speak, you may have an inkling that she once suffered from moderate to severe childhood apraxia of speech (CAS), or you may be none the wiser. Although Kate is a bright, creative, and eager soon-to-be 2nd grader, she has overcome a road block most of us never have to deal with: a struggle to communicate expressively.  

And why do I share this?  

Since you are about to embark into an exciting profession of working with children and their families, I’d like you to have an inside view of what it’s like to raise a child with CAS.

·       We are hurting.  We feel a sense of loss in our child’s lack of verbal communication.  We are grieving.  We didn’t want this to happen.  Heck, most of us don’t even know what CAS is!  

·       We are frustrated.  We don’t know what we are doing wrong (some of us blame ourselves on our child’s inability to speak).  It’s hard to live a life where we only hear our child(ren) point and grunt to get their needs met.  

·       We feel all alone. It’s not every day you run into someone else who is also struggling with CAS.  It often feels like it is “us” against “the world.”  If you know of anyone else who is open to connecting for play dates or support groups, hook us up!

·       We have a lot of other concerns.  It may be that we have to take off work early—or stop working altogether to make sure our child gets to speech therapy.  Money may be tight.  Our insurance may be giving us a hard time.  The demands of raising a family, running a household, and dealing with apraxia may have taken a toll on our relationships.  

·       We have a full, busy life.  Apraxia and speech therapy is a part of our life, but we are many things to many people.  Please respect our time.  

·       Deep down, we just want to have a “normal” kid.  When we overhear a precocious 3-year old chatting with his mommy or daddy at the local park or coffee shop, our heart breaks.  “Why can’t that be my kid?!”

·       We worry.  Will this ever get better?  Will my child be able to talk—when?  What do I need to do?  

·       We want to help.  Let us into your speech-pathology world.  You don’t have to give away all of the secrets to the trade, but let us be your partner.  

As a professional SLP, here’s what you can do to help smooth our path:  

·       Give us homework, tips, ideas, and more information on childhood apraxia.  Some folks may request this, others might not know what they need or want.  Feel us out.  If you come across something in your professional life you think will help, but all means, pass it on.  

·       Treat us with respect and compassion.  We know a lot about our children and we want to help them.  

·       But don’t tip-toe around our feelings. Go ahead, lay it on me.  Tell me that CAS is serious and complex and can take years to remediate.  Tell me, too that you will do all you can to help my child learn to speak verbally and that we are in this together.  I need that right now.  

·       Ask us about our home life.  We may have some inside tips to help you with our child in therapy.  For example, she really does get scared of bubbles; please do not blow them with her.  She can’t go anywhere without her favorite stuffed puppy.  Let her bring him to therapy and perhaps incorporate him into your activities. 
You see, as a former R.N. who worked with children day and night in an inpatient child psychiatry program at the Mayo Clinic, I know that children and their families matter.  We are not simply a diagnosis who needs treatment.  We are real people, with real feelings and real lives.  

It is because of my daughter Kate that I wrote the first book designed for parents on this complex neurologically-based motor speech disorder.  SPEAKING OF APRAXIA: A PARENT’S GUIDE TO CHILDHOOD APRAXIA OF SPEECH (Woodbine House, 2012) is as much as labor of love as it is a resource to help others along their apraxia journey. 

The book is comprised of over 300 pages of tips, ideas, research, and more on various topics related—not just to CAS—but other speech disorders from suspecting a problem to getting treatment (what that treatment consists of), school challenges, what you can do at home, family coping, child coping, networking, advocating, and co-morbid conditions.  Sprinkled throughout are quotes from parents speaking out about apraxia—what helped, what mattered, and what challenged them.  

Speaking of Apraxia is a must-have for every practicing pediatric SLP.  Read what others are saying:
" I was so excited to open up my Advance for SLPs magazine today and see your book advertised! Your ‘baby’ is out there. I wish you lots and lots of success with it!" --R.W.
An SLP in Missouri shares this: "I already have a couple of families in mind that I am excited to tell about Speaking of Apraxia. What a great resource!"
"I could feel your blood, sweat and tears as I flipped through the pages (wiping my eyes).Outstanding!  I just shook my head in amazement...I am in awe and I am still kind of speechless...really! This book will be just one of your legacies...well done!!"
--T.K.P., CCC-SLP in Minnesota

And remember, our kids need your special touch.  For without the “magic” of dedicated SLPs, our children with apraxia wouldn’t be able to make the gains they do.  Thank you. 



Leslie Lindsay is former child/adolescent psych R.N. at the Mayo Clinic-Rochester. She is the mother of two school-aged daughters and a basset hound, named Sally. Lindsay and her family reside in the Chicago suburbs where she writes full-time. She is the author of two times award-finalist Speaking of Apraxia: A Parent's Guide to Childhood Apraxia of Speech (Woodbine House, March 2012). Read more on her blog, where she writes about apraxia, parenting, & education, speakingofapraxia.com
 



Friday, November 22, 2013

We Hear You

For all those with special needs, those who are neuro-divergent..for all those that no-one wants to hear:

We hear you.

Parents, therapists, educators, any and all kinds of people...so many, many people have so much respect for all those around them, regardless of ability or challenge.
We're not heard from everyday.
We're told we're crazy, we're too optimistic, we're not realistic...we're told these words in front of the person we care about, the person we're helping to engage, the person we're supporting...and so that person thinks they lack something...and they think that we're just like the others, and we don't really care...

So if you ever doubt our sincerity, our love, and our support, we say:

We hear you.
We honor your way of communicating.
We hear your voice when it is loud, and when it is silent.
We know you have so much to say, even when everyone else thinks you have nothing.

Are you non-verbal? Adaptive tech? Verbal?
We honor any and all.
Are you echolalic? Do you script? Perseverate? Scream? Whisper?
All of that is totally fine. We will hear whatever you'd like to share, however you'd like to share it.
Don't have a way to communicate yet?
No worries. We will help you find a way that works for you.
Prefer not to communicate sometimes?
That's ok too.

Communicating is so much more than words and sounds.
Communication is relating and engaging.
Trusting and sharing.
And relating to another.

For all those that struggle to be heard,
And for those that have been made to feel they have no voice,
For those that no-one seems to want to hear...
For all those that have been told to use their words,
And for all those that are non-verbal:
We support you.
We respect you.
We hear you. 

Friday, November 8, 2013

ABA: No Honesty Allowed

Recently Ariane Zurcher, the eloquent blogger of Emma's Hope Book, posted an exceptional, and apparently highly controversial piece on ABA; and more specifically, the experiences of someone with Autism who endured ABA:  "More on ABA"

Note that Ariane shared she had shut down the comments section to her first post on ABA some years back, because she continued to receive hostile responses.

Many responded to this second post with support, but many also responded saying that Ariane was spouting falsehoods, and that she had no idea what she was talking about.

Ariane quoted from a young man named Ido, who shares his experience growing up with Autism and ABA in his book: Ido in Autismland: Climbing out of Autism's Silent Prison.  He shares first hand accounts of what it was like to endure what others called "therapy." He details the lack of respect, the isolation,  and the misery that was his when subjected to the harsh, thoughtless, and harmful therapy he had for so long. He details that no-one presumed he was competent and that he was left trapped inside himself, subject to the torment of a way of thinking that was by no means therapeutic.

And yet people are commenting on Ariane's piece in the harshest of ways. They are saying that what Ariane is saying (Ido's words) is false.

This is a theme I hear over and over again. If an Autistic person is recounting something that doesn't sit well with the "professionals", he must be wrong. If he is behaving in a way that others find inappropriate (because he is frustrated and cannot communicate), he must be non-compliant and acting out. His Autism must be skewing what he is saying and/or doing. His Autism makes him not understand what's "really" happening.  He doesn't have the capacity to "get it."

So they discount what another human being is sharing. They laugh and pat them on the head and walk away, or they get mad and tell them they mustn't do that anymore, or they punish them. This happens all the time to younger children who fight and fight against sitting in a chair for 2 hours, or who refuse to "work" for that piece of candy. We hear they are "non-compliant" and "being difficult." We hear they need behavior modification, stricter rules, and more therapy.

But Ido, and others like him, know what ABA really is. They've experienced it first hand. They're not just sitting making checkmarks and doling out bits of snacks. They're on the receiving end. And now that experience is being shared.

Since that experience doesn't sync with what ABA "therapists" (and others in the Autism industry) want to hear, then apparently it must not be true. In fact it must be an outright lie.

And because to think that it's anything other than a lie is simply too much for many practitioners to realize, it simply isn't acknowledged. Or it's refuted. With anger and hostility. These individuals choose not to listen, not to step outside their own head, and they choose to not move away from their ego long enough to see that what's being provided is offering more harm than good.

To shut out the voices of hundreds (perhaps thousands) of people who are coming forward to share their experiences with ABA and other forms of harsh therapy, is not only a terrible disservice, it is a blatant lack of equality and lack of respect.  It is selfish, narrow-minded, and cruel. It is by no means therapeutic.

Who's to say that someone's judgement, of their OWN situation, is wrong? Who is anyone else to judge someone else's judgement? To say that their personal experience isn't accurate?

Ariane: "If you are an ABA therapist, it is your obligation to, at the very least, read what those who are autistic and were given ABA as children are saying about it." "More on ABA"

and Ido's mom in the introduction to his book:
"The ideas in this book challenge many assumptions long held by professionals working with autistic people. In our own experience, Ido broke free in spite of, not because of, the mainstream thinking today. If we had continued to rely on the specialists and educators who dominated Ido's early years, if he had not been able to find a way to show me that he could read and write, and if I had not finally trusted my own eyes and impressions, Ido would still be stuck as he was, locked internally, underestimated, and hopeless. It is time for our understanding of autism to undergo yet another paradigm shift, , and Ido, along with other non-verbal autistic communicators, is a pivotal guide." Page 37 Ido in Autismland: Climbing out of Autism's Silent Prison