Category Archives: "low-functioning" autism

Brain Alive in a Vegetative State?

How much do we assume because of appearances?
A stroke patient may not be speaking. Is the mind empty?
An autistic person may not be speaking and does odd things. Is the mind empty?
A person with locked-in syndrome can’t move. Is the mind empty?

Who gets to decide if a person who is locked internally is thinking or not? Is it the geniuses at ASHA or the Lovaas Institute or in the university or clinics? How can a trapped mind communicate intelligence if the presumption is that the intelligence is compromised?

And what about the “brain dead” in vegetative states? Now new evidence indicates that 1 in 10 have consciousness. It’s my opinion that the brain is vast and its thoughts unknowable by mere external observation.
Not talking is not the same as not thinking.

Scientists Try to Find Ways to Demonstrate that Nonspeakers with Autism Understand

This podcast is attempting to explain alternative means of testing the intelligence of nonspeaking autistic people. (It is the companion piece to the article I shared from The Atlantic Magazine in my last post). These tests rely on evidence in the brain to show understanding when a person cannot communicate. I’m all for showing intelligence because it’s important to show.
I think teaching communication is helpful too. I mean, I really can show my intelligence if I communicate.
That is going to be my goal each and every time I hear or read something like this, because intelligence remains trapped if a person cannot type their thoughts or express their ideas somehow.

Incidentally, my mom and I were interviewed for this podcast.

Part 2 Typing to Communicate/ Tips for Getting Started/ Give it a Go!

Guest Post by Susan Finnes

I am passionate about RPM! I realised that many others could use this approach – but how could they learn ? There were very few teachers and only one Soma! I started to share videos of myself and others working with Chris on my YouTube channel and people from all over the world started to contact me asking for help to get started.

I knew I could do more – Chris was telling me that he wanted to help others to learn, so in 2013 I began to organise annual Soma workshops in the UK and I set up a facebook parent support group (intended for UK families, but it quickly became international). This is the link to the group Unlocking Voices – Using RPM https://www.facebook.com/groups/627199673958985/

My objective is to EMPOWER PARENTS so they can learn Soma RPM , even without having direct access to a teacher – and to learn it correctly. I want to make it easy for people to try it and then to share their learnings, to make RPM accessible to people all over the world by providing free learning resources which supplement Soma’s books. I would HATE to think that RPM was only for the ‘rich’. I maintain close contact with Soma and encourage her to share her learnings on the facebook group. One of Chris’s helpers – Alexandra Hopwood is now a highly skilled RPM Teacher (she completed an internship with Soma) and she helps me to make short tutorial videos which have proved very popular! The video links are available in the RPM Learning Resources file (one of many free resource files linked to the facebook group).

Here’s an example of one of our videos : ‘ 1- How to do written paper choices – basic principles’

https://www.youtube.com/watch?v=slfnouqFqnEake

If you are wondering about RPM I’d like to urge you to join our group and make use of the free resources – what have you to lose? When I presented at the 2017 HALO RPM conference I was delighted to meet many parents who I recognised from the Facebook group and who have now gone on to set up their own local support groups and trained to become RPM teachers themselves.

I know that many parents join the Unlocking Voices- Using RPM group and see the examples of RPM working but fail to try it themselves for months or years. Or try it a few sporadic times and drop it for months or years before finally giving it a proper go. For many, RPM seems to be a ‘last resort’ – nothing to lose.

Why is this happening?

I think many people don’t believe or are afraid to believe for their own child – particularly when all the so-called ‘experts’ seem to spend so much time telling them what their child CANNOT and will not be able to do. Why would we not believe these experts? Every time your child fails to follow a simple instruction, or does not respond in a neurotypical way to an event, eg. no excitement at birthday/xmas, this serves to cement the belief that there is a huge lack of cognitive ability. On the other hand many parents I have spoken to will also say that their child is underestimated by teachers and give great examples which to me prove intelligence and learning capability eg . problem solving skills – finding escape routes, figuring out how to use dvd players, knowing when food cupboards are open , responding to their name. This proves that the child is capable of learning if taught in the right way.

Some parents I have spoken to do not believe in themselves – they do not believe they are capable of delivering effective RPM sessions. I can understand this – particularly if you have seen Soma or another experienced teacher. They make it seem so easy and then you have a go and make a total mess of it. Believe me, we have all done that ! I think it teaches our children a valuable lesson – we are showing that you will not be perfect when you are learning a new skill –so not to be afraid of making mistakes and not to give up but to keep practising . You are not going to do any damage to your child by trying a session and not delivering it perfectly – you will only get better with practise.

I think that some parents may try RPM a little and “fail” without realizing they haven’t tried in an effective manner or given their child nearly enough opportunities to practise and progress in his skill and tolerance. Often seeing or skyping with an RPM teacher can rectify this, but equally there is a need to understand that RPM progression will be different for each student – so it’s ok to try it without thinking there needs to be an initial BIG BREAKTHROUGH or it’s a failure for the child. For many students the process is a long one – lots of daily practise for a year or longer without open communication. This takes resilience from parents who are ‘desperate’ to talk to their child and seek proof that all the time invested will be worth the effort.

Those parents who haven’t tried yet may be daring (or maybe afraid) to hope that their child will type independently and share sophisticated thoughts IMMEDIATELY. Then if they try and don’t succeed in this there is a feeling of desperation and failure.

I understand all of these feelings –

I know any time I’m thinking about learning something new, a few things happen inside of me:

– I think about it and usually order a book /do some internet research
– Tell myself I don’t have time.
– Talk myself out it.
– Think about it some more.

– Tell myself I need more training /help
– Procrastinate some more ( I have MANY unread books!!!).

 

What I know now is that the MOST IMPORTANT THING is to simply TAKE ACTION AND TO HAVE A GO WITHOUT EXPECTING PERFECTION!! Then to KEEP GOING and LEARN from mistakes.

 

Please don’t judge your child’s potential by what he does with his body – Ido explains this really well in Ido in Autismland . I urge you to read this book and to share it with anyone who works with your child.

Chris is 18 now and we have to think about his future. This year we talked to him about the Mental Capacity Act -all Chris’s responses were made by pointing to a laminated letterboard. You will see on this clip that on this day he needed more tactile feedback – so the teacher is pushing the board towards him as he touches the letters. I like what Chris said ‘ the capability of the body and the mind are completely different’ https://youtu.be/syt6QnV_6vA

A;You may have heard your mum talk a bit about this , As you get older you’ll start to hear the term ‘mental capacity’ more and more…. what is your understanding of this?

C: IT IS ABOUT IF THE PERSON HAS THE CAPABILITY AND INTELLIGENCE TO MAKE DECISIONS PERTINENT TO THEIR LIVES.

A:Very good…what type of decision do you think, give me an example of a decision?

C:WHERE THE PERSON WANTED TO LIVE .

A: Do you think sometimes people assume people with autism don’t have mental capacity (eg I’ve come across people who were deemed not to have mental capacity but actually did..)

C; THE CAPABILITY OF THE BODY AND MIND ARE COMPLETELY DIFFERENT

A; I like that point – eg look at S Hawking– his body vs his mind. Do you think that’s why a lot of people struggle/confuse the two?

C: THEY CAN’T GET PAST OUR BODIE.S

Thanks for taking the time to read this – I hope you are inspired to just HAVE A GO !

 

Sue Finnes is an autism advocate, YouTube educator, and the moderator of Unlocking Voices-Using RPM Facebook parent learning group. She is the mother of Christopher, aged 19, who describes himself in this way, “I am intelligent but happen to have a body that doesn’t obey my thoughts.” They live in the UK.

 

 

 

My Speech at the Profectum Conference

I believe it is time to look at severe autism in a new way. The theories that determine treatment for young children are based on long held beliefs that autism is a processing problem of language and conceptual thinking.According to some theories we cannot recognize emotions, we cannot visually distinguish relatives and friends from other faces, or know right from wrong. Some have even declared that we even cannot recognize a human being from an object.That’s pretty bad, huh.

Is this iPad living, or an object? Maybe incessant drills on flashcards will clear that up. Perhaps I have been introduced to all of you by an object, not a person. How can I tell that a person is not a machine? The same way that all of you can tell.

I guess the solution for decades has been flashcard drills to drill on nouns, verbs, people’s names, commands, and on and on. It is a familiar start in life for a lot of us. But why should I be drilled on what I already know as well as everyone else? From my point of view, it’s a pretty insulting premise.

To base a person’s education on these assumptions is risky because a boring day of ‘what is the weather?’ drills, or touch your nose lessons, does not teach what one needs to learn. I suppose if people really don’t understand, or cannot recognize the difference between mom and dad, or mom and a table, these common methods might help.

But autism is not that disorder.

The autism I have is not a language processing problem or a lack of understanding anything. I want this point crystal clear. My mind is fully, totally intact. In fact, my experience is that most nonverbal autistic people have intact minds too.

Here is your challenge. Stop looking at our weird movements, blank faces, lack of speech, trouble handwriting, poor self control, and on and on, as proof of intellectual delay. It may look like it, but I think looks here deceive. Believe me when I tell you that if I could look normal on the outside I would do it immediately. I am normal on the inside.

That’s different than what people with Asperger’s say, or what Temple Grandin writes in her books. But that’s because Asperger’s Syndrome in severe form is not what I have.

I hope that’s clear because it confuses many professionals. Different neurological problems have the same DSM diagnosis. That’s confusing. I think it would be like putting AIDS and head colds under the same heading because they’re both viruses. Too much is covered under the heading, Autism Spectrum Disorder, and this misleads an understanding of what I have.

So now, let me tell you what I have. Autism for me is a severe problem.

How would you like it if your thoughts didn’t reach your body consistently? What I mean is that your thoughts are intact but internally neurological forces block them from your motor system so that messages get messed up, or ignored, or occasionally they get through. That can resemble not understanding, but it is not.

Nevertheless, the person cannot necessarily demonstrate intact thinking due to the motor issues that block speaking, handwriting, gestures, facial expressions, initiating actions, and more. So, smart intact people may spend years, or even their whole lives, in a body that traps them behind weird movements and unreliable, inconsistent responses. More than that, neurological forces may affect the sensory system, making sounds too loud or visual stimulation overwhelming. The frustration is compounded by autism experts who dumb down learning because of their belief that autism is a language processing problem.

When I was young I did ABA. No offense to any ABA people here, but for me it was a horrid experience. I found those early years of drills and reinforcements an exercise in boredom because I already knew the vocabulary they taught. I just had unreliable hands to point to the flashcards accurately. The baby talk, and most frustrating, the supervision sessions that never worked on my real challenges, made me feel frustrated and angry. Worse, the theories probably delayed my mom’s ability to recognize my true potential by several years, at least.

No offense to any Floortime people here, but I never got much out of my sessions because my play was so delayed when I was small. I craved more than the games I got. But my Floortime was minimal. I was drowning in ABA drills instead.

No offense to OT people here, but what I desperately needed was motor control and physical fitness, and I never got that. I got swings that spun me. Once until I barfed.

No offense to special ed teachers, but when I couldn’t show my intelligence, I still was thinking. But all I got was one plus one, ABC and the weather. My recommendation is to teach at least some age appropriate lessons and books, even before the student can express his thoughts. Who knows how much is locked inside?

My helpers were kind and well meaning, but the way I was taught missed my real needs for communication and motor control simply because the methods assumed I did not understand spoken language and therefore needed a rudimentary lifestyle.

What helped? Soma did. She gave me the ability to type on a letter board when I was seven through her method, Rapid Prompt Method, or RPM. This has progressed to a keyboard and ipad. Because of this, I am a general education student, college bound, on the high honor roll in AP classes and even learning a foreign language. I work out with a trainer and I hike and run and row on a machine at home. I also took piano lessons. These things helped me.

To all the professionals I offended earlier, sorry. I admire your devotion, compassion and caring. I challenge you to see your nonverbal autistic students differently and with high expectations for learning.

Parents, don’t give up hope. If you see intelligence, even if brief, then intelligence is there. It’s most likely inconsistent because of those frustrating neurological forces I mentioned.

Communication is a blessing. Lack of communication is a curse. Let’s give kids the blessing of communication and a real hope for tomorrow.

Thank you.

www.profectum.org

More on Scientific Un-Query

Guest post by Tracy Kedar (my mom)

When Ido was small he was in an ABA program that carefully documented all of his responses to discrete trial drills. In a huge logbook divided by the specific drill outcomes being measured, the exact number of his correct responses, incorrect responses, number of trials, and whether prompts were needed was recorded. The data clearly indicated the exact number of words Ido understood, which they measured as not being very many, with the belief that the only way he acquired new vocabulary was by being taught it in drills. The proof of mastery was the accurate pointing to the word on flashcards consistently.

When Ido began to express coherent ideas in normal English via writing, the scientifically gathered drill data made his ABA team convinced that this was simply not possible. It was inconceivable to them that Ido could understand and express grammatically correct, vocabulary rich English because their data evidence proved all he knew was far less.

Autistic kids I have met and seen communicate by iPad, keyboard, or letter board, without tactile support, still face dismissive letters whenever they appear in the media written by total strangers who are absolutely certain that the journalists were derelict in publishing a fraudulent story. The reporters are accused of not doing “due diligence” by telling the story of a nonverbal autistic kid who “miraculously, overnight” can communicate, despite the process leading to typing fluency being one of years.

Not long ago a skeptic professor in our area from the psychology department of one university spoke to an audience of university students studying ABA at another to show how unscientific and improbable it was that autistic people could communicate fluently by typing. He scoffed at RPM which he called “dangerous,” and laughed at how unscientific it was. He was alarmed at stories of kids like Ido appearing in the media.

This scholar, like so many of the writers of the skeptical letters, stated that he spoke on behalf of scientific methodology. He was firm in his belief that the data collected in discrete trial drills proved the fallacy of these severely autistic communicators, since data didn’t lie. I agree with him that the data collected in Ido’s old ABA drills were completely accurate. The recorded notes accurately indicated whether he got answers right, wrong, how many trials, and whether a prompt was needed. Where I differ from the professor is what it means. To him, the data was clear proof of Ido’s low receptive language processing, limited cognition and the impossibility of advanced comprehension. To me, the data simply reflected his ability at that time to accurately point to the card requested.

Those nonverbal autistic individuals who have learned to type are consistent in describing themselves as having a frustrating mind body disconnect. They state that while they understand what they hear, they cannot get their bodies to obey their minds with the kind of consistency and reliability that is necessary to prove it. Ido devoted several chapters of his book to describe and explain this challenging neurological experience and he describes how instruction and practice, using very particular techniques, helped him to develop  the ability to overcome these challenges enough to be able to communicate his thoughts, first by pointing to very large letters on a letter board held at eye level, and ultimately, as control improved, by typing on small ones on an iPad or keyboard on tabletop.

So yes, the drill data is accurate. The question is whether their hypothesis explaining why this occurs is correct. If the scholar and skeptics are correct and the drill data is a reflection of all the cognitive understanding that lies within a person, then of course children once thought to be low functioning who now claim to type and read and write fluently are to be viewed with alarm. Their achievements are viewed as “clever Hans” phenomena and any support they receive is seen as suspect.

On the other hand, if what the people with autism say is true, then the data is useless in those cases because all it measures is whether they could get their hand to obey their mind at any given trial and doesn’t reflect their capacity or knowledge. Consequently, the efficacy of the treatment becomes the issue.

Given these divergent possibilities, one would think that those who state they are proponents of science and scientific methodology would be lining up to meet those people with autism who have known histories as “low functioning,” complete with videos, reports, and school records, who now communicate fluently by typing, often with no tactile support at all, and who receive and thrive in general academic educations.

How is possible for anyone to determine that a person is not really communicating solely from reading a newspaper article or watching a television news short? Rather than showing the kind of scientific inquiry that is supposedly the hallmark of science, these folks seem to treasure data collection to confirm an existing theory over a willingness or curiosity to explore whether there is more that could be learned, even if it means that some of their ideas have been incorrect. That doesn’t seem scientific to me. It’s circling the wagons.

Out of the Closet

 

Every day I meet new communicators. Not babies, but kids in elementary school, teens and young adults. Their lives had been limited in one way communication for way too many years. They listened but they had no way to answer. In any case, they heard people. Many of them heard their parents moan and groan and say comments like, “I don’t know how much intelligence is there. I don’t think he understands much.” They listened to their teachers say things like, “He isn’t aware of right from wrong. He isn’t aware of his surroundings. He is oppositional today.” They listened to ABA specialists tell them, “No, try again,” “No, try again,” “No, try again,” and “High five. Good job.” They heard a world that thought they were dumb. But the world in this case was wrong.

It isn’t a lack of intelligence to be able to think but to not be able to get your body to show it. It is being trapped. If I put your hands into baseball mitts and your tongue was trapped in gooey sludge and couldn’t move right and I bombarded you with questions, I think you would agree you would have a hard time showing that you had an intact mind, especially if those baseball mitt hands moved differently to your thoughts and wishes sometimes, and everyone assumed that people with sludge tongues and baseball mitt hands were intellectually low.

I know the way to escape this isolation is not to tell sludge tongues and baseball mitt hands to move in ways they can’t. It is to teach those hands to point to letters, to type with one finger and to communicate. There is now a steady tide of people, once thought to be dumb, once thought to need baby lessons and baby talk who are mastering communication on letter board and typing. And voila! Not dumb!

More than anything they find relief being recognized as intelligent. And some find even more; a mission, friendship, a life of meaning. But none will go back into the closet of silence.

I wonder if you are a parent, teacher or professional and you have seen a “dumb” kid prove himself smart, how do you react with other kids? How long should they wait for you?

On Education and Communication; A Message to Parents, Professionals and People with Autism

School is finished at last. The year was tough but I learned a lot. I read great literature. I loved US history and understand my wonderful nation better. Chemistry was fascinating too. Learning how our universe is composed is thrilling to me. Me gusta aprender español también. I learned a lot about math and animal science too. All this is thanks to my index finger and typing my thoughts.

I have the desire to pursue a college degree. One more year of high school and this dream will be a reality. Over spring break I visited many colleges with my parents. It will be different than all day, every day, of high school in one place going room to room. But I will have the opportunity to get more education in biology, neuroscience and other fields, and maybe I can help improve our understanding of autism in more ways.

I push myself to get good grades. It matters to me that my grades show my intelligence. My teachers were great. They pretty easily adjusted to my mode of communication and welcomed me warmly. My life is so rich now. I have friends in school. I love to go.

My message is to parents who wonder if their child can learn. Only the most determined parents will find out. If you are working with experts like those from my early life, they limit your child in low expectations. They tell you that being impaired in body is being impaired in mind. They let you work on skills that barely progress and tell you that your child isn’t advanced enough to write.

If you keep on listening to them they will keep low expectations for a lifetime. I know it is hard to be the parent who disagrees. I watched my mom try to deal with my ABA team when I began to communicate at seven. I have  watched our friends fight school district attitudes. They went through a big hard slog. They also got their kids typing and into general education. More than anything else, the parents believed in the possibility that their child had more in them than they were told. Parents, you have to trust your guts. You see your kid all day in real life. They see a drill or a lesson, and these moments where the motor issues of severe autism are at their worst.

Professionals, I have a message for you too. I used to think you were all clueless and control freaks. This is not to say that people were not warm or kind because I liked my clueless teachers as people but resented their attitude of certainty. If you work with autism, be prepared to accept that a degree in psychology or sociology or speech pathology or occupational therapy isn’t giving an insight into more than symptoms. My brain and how it’s impaired is a guessing game, even for neurologists, so I think the certainty that many practitioners have when it comes to autism is really puzzling. Being open-minded and admitting that the brain is vast and mysterious is required, in my opinion, by anyone who works with severely autistic people.

Now I have a message for people with autism who can’t yet communicate, and I ask parents to read my essay to their kids, Have hope. More than anything, have determination. Life outside your head and stims is really worth striving for. I believe soon there will be too many people with autism who type to keep insisting we are one in a million. I am fighting for your freedom and so are others. Hang in there.

False (Deprivation of) Hope

By guest blogger, Tracy Kedar

 A few weeks ago my friend’s elderly father was hospitalized. At the time he was confused, agitated and had worrisome physical symptoms. A doctor told my friend that she should place her father in a hospice, that his death was imminent. “What?” she responded, “He was driving just last week!” “Well,” said the doctor abruptly, “he isn’t now.”

Today he is back home, back on his feet, and more active than he has been in months following the correct treatment of his symptoms by a different doctor. “What that doctor did was rob me of my hope for my father. I was crushed by his verdict and he turned out to be completely wrong,” she told me.

How can we fight when we are told something is hopeless? When there is no point in hoping we must be resigned and accept. When Ido was around six a doctor we saw who specialized in autism said that over the next few years it would become obvious whether Ido would be able to improve or would spend his life as a “low functioning” autistic person. This was prior to him having any communication and his true potential was totally unknown to us. She was preparing us to accept the low remedial, low expectations prognosis she saw as inevitable at that point.

 I was thinking about these stories, and so many others, of professionals advising people to abandon what they saw as false hope, and then having their dire predictions turn out to be wrong. These professionals advised false deprivation of hope, in my opinion.

 I have heard a few people suggest that Ido’s book may cause disappointment to parents whose children with autism may not learn to type as he does. Perhaps they believe that people with autism who have the potential to learn how to communicate their ideas are such rare exceptions that it is better if they keep silent and not give parents a chance to dream that their child too might have that capacity. Better to have low expectations, this reasoning goes, than to strive for more and have hopes dashed. Keep expectations low like this and you guarantee disappointment.

 Every autistic person I know who now can express his or her ideas through typing was once thought to be receptive language impaired and low functioning intellectually. No teacher would have looked at them as children and said, “That one will be a fluent eloquent communicator.” That is because their outside appearance belied their inner capacity. Every parent of these children gambled and decided to pursue letterboard and typing without any guarantee of success.

 Since Ido began typing a number of children we know personally also began to get instruction in use of letterboard and typing on an iPad or other assistive technology, either by Soma Mukhopadhyay at halo.org or in another method. And every single one of them has proven themselves able to communicate. Some are more proficient than others, but none had zero capacity. (This is different than rote drills of typing and copying done in many schools. This is specialized training in typing as a form of communication).

 How would it have been compassionate to these children and their parents to lower their hope to the point that they would not even try these methods? Shakespeare said. “Better to have loved and lost than never to have loved at all.” In this case I would change it to, “Better to have tried and not succeeded than never to have tried at all,” because success may very well be the result.

 Ido describes his experience of autism as being trapped in his own body, with a mind that understands and a body that doesn’t obey. Every nonverbal autistic communicator that we know of has expressed the same thing. How many more are waiting to find a way to express their thoughts and receive an education? Diminished expectations helps no one. I do not believe hope in this case is false, but rather, the denial of hope through misunderstanding and low expectations is what is false.

My Speech at the Vista del Mar Autism Conference

I am honored to speak here today. I know some of you are professionals working in autism, and some of you are parents, and even a few of us here actually have autism. So I will represent the point-of-view of someone who has unfortunately lived with autism since the first moment of life.

It aint easy.

It’s hard on parents and I see the sadness and struggle of them all the time. It’s a true challenge to have a child who can’t do normal tasks, does odd self-stimulatory behavior in all the worst moments, can’t communicate in words, signs, or even gesture their deeper thoughts, and needs constant supervision. So I have empathy for what parents go through. The worst for parents is never knowing if your non-verbal child is understanding and thinking at a normal level. It leaves parents talking simply- as they have been advised- to help their child with basic concepts. The child is never fully communicating in sign, or Pecs, or even speech, so it is a really hard situation for families.

The autistic person has a different challenge. Recently the news was about an Israeli soldier held prisoner in a dungeon in Gaza for nearly six long years with no communication with the outside world at all. I thought about how awful it would be to be a captive cut off from life and sun and kindness with no certainty of surviving or being freed.

Now, autism isn’t a matter of life or death, but it is a prison that won’t let us talk to the outside world and we have no certainty of ever being freed. I brought up the analogy because I think people can imagine more easily being a captive of cruel terrorists than of being a captive of your own body. So, you need to try to imagine my situation as a young non-verbal boy with no way to express my ideas and see that it was like a nightmare. Not only was my mind fully present and understanding everything, but I read fluently. I thought of retorts, jokes and comments all day long in my head. Only no one else knew.

So, I was talked to like a toddler, not given a real education, and kept bored and sad. This changed when I was finally taught how to get my thoughts out. The liberation was as remarkable as the freeing of this poor captive.

It’s true that I stay tied to autism still. It is with me every moment of my life. It is not a liberation from autism to be able to communicate or get an education. However, it is a liberation from its isolation. My typing and my pointing to letters have enabled me to be a free soul.

I go to a regular high school all day. I go to regular classes too and I do regular homework, and so on. I may challenge the teachers because I behave oddly at times, though I am actually working super hard, but I learn, get good grades, and intend to graduate, go to college, and live a kind of, sort of, normal life. Kind of, sort of, because autism is a barrier to normal anything.

Being autistic is a major challenge. It is the biggest hurdle because it is pervasive, very misunderstood, and incorrectly worked with in too many cases.

When I was twelve I started writing about living with autism. Soon I hope my essays will be available to you in a book that will explain a lot of the behaviors and inner experiences of the person with autism who can’t communicate.

If you check out my blog, www.idoinautismland.com, or follow me on twitter or facebook, you will be alerted to when it is ready to purchase. My goal is to help you parents connect to your children in real communication, and to help professionals understand the real experiences of your clients, and to burst open the prison door of my fellow travelers in Autismland.

Thank you for your time today.

Autism and Friendship

In friendship there is give and take, easy talk, shared interests, and socializing. I see the way my sister is with her friends. I can’t do what they do. I’m not referring to girl stuff. I mean the social stuff they do.; talking on the phone, sports, texting, meeting at each other’s homes, malls, and all the rest. How is an autistic person who is not verbal, limited in initiation, independence, and the rest, going to do that? We have an isolating illness. It stops us from doing the normal social things and it makes people want to avoid us too because we are so different and so hard to engage.

I have a few suggestions for how to be a friend to an autistic person.

-Don’t patronize, even if the person seems “low-functioning”. Who knows what is trapped inside?

-Stay friendly and say “hi” even if the autistic person is not animated in expression or doesn’t say “hi” first.

-Try to imagine what non-verbal messages the person is communicating in behavior.

-Help them stop if they get too stimmy.

-Connect in the ways you can.

I see some people are able to reach through the barrier with autistic people. They are energetic, friendly, not putting up with aggressive or bad behavior, positive and calm. The worst traits for an autistic person to be around are the opposite; lazy, grumpy, weak and afraid to set limits, negative and tense. I mean, who likes being with negative, grumpy people? But in autism we get so affected by the moods of others. I think friendship is different in autism. I am friends with people without socializing in the normal way, but I hope one day my skills will improve.