Autistic genius with dark streak--HELP!!

[Tia Maria]

Cami, I may not get back to the AC site for a while so I wanted to wish you & especially this little boy so much luck, & I pray he will be able to get the help & assistance he needs; & can have a decent & happy future. He has not received good parenting to date & the most important years are 0-12, although as Tom wrote above, it is not too late.

It also seems evident that he has not received adequate nurturing or parental bonding; thus the jealousy & possessiveness, & obvious attachment & abandonment issues. That is heartbreaking & can leave permanent emotional damage. Some of his other actions are very worrisome in other ways, & even a little frightening. He definitely needs help & some here have provided you with good advice. I think Tom's parenting advice is spot on, & an excellent parenting book you should really pick up is "1, 2, 3 Magic". Although it doesn't address special needs concerns, it is very constructive & applicable to all children.

Knowing now your situation & relationship a little bit better, I would say that if you are spending time with him going forward, please try to teach him some form of facilitated communication. They don't teach it at schools, or in ABA therapy for autistic kids. They mainly focus on teaching them to speak a handful of words, or pointing at pictures to request things, like juice.

You can learn more about facilitated communication by searching the internet, but please disregard the naysayers as there are many & their assumption is that someone who can't speak or needs assistance communicating is mentally retarded. You can purchase inexpensive Letter Boards as I linked above, or that iPad app is $25.

Also check out this organization Halo-Soma - Rapid Prompting Method for Autism - www.halo-soma.org & the book, "Ido in Autismland" by Ido Kedar. Ido has a website blog which I think is outstanding. He also posts short videos of himself using Assisted Chat on his iPad which very clearly demonstrates the process.

My fear is that if you don't work with him on this, there is no one else who can or will do so. Pretty much it is someone's Mom or Dad who teaches this to their non-verbal autistic child. Otherwise, they don't learn it. It's that simply. But it makes the difference between a child having the ability to communicate or not; & I cannot imagine a world without being able to communicate my thoughts, feelings, wants, needs & desires to others.

Separately, he still needs professional help & I truly hope you can help him get that.

I don't know what else to say except Good Luck to you Cami. I hope everything works out well. Helping this little boy may be saving his life.

 

[Tom]

"Well that's a fine mess you've gotten yourself into.'

Don't mean to be flippant. When dealing with autism, whether it's yourself or someone else, humor can be a great coping mechanism.

 

[wyverary]

I would say that if you are spending time with him going forward, please try to teach him some form of facilitated communication. They don't teach it at schools, or in ABA therapy for autistic kids. They mainly focus on teaching them to speak a handful of words, or pointing at pictures to request things, like juice.

You can learn more about facilitated communication by searching the internet, but please disregard the naysayers as there are many & their assumption is that someone who can't speak or needs assistance communicating is mentally retarded. You can purchase inexpensive Letter Boards as I linked above, or that iPad app is $25.

Whoa, whoa, whoa, whoa, WHOA! Pseudoscience...The naysayers actually have a great deal of data to back up their claims, and even some who formerly advocated for it backed away after the evidence came out overwhelmingly against it. Anything you read on the Internet that says otherwise is rooted in denialism.

Read at least the section of Autism's False Prophets by Paul Offit that goes into great detail about facilitated communication and has plenty of citations and evidence that it is the "facilitator" who is doing all of the "communication." It turned out doing a GREAT deal more harm than good, even resulting in a lot of false accusations of child molestation! I advise heavy skepticism with such concepts.

 

[Tia Maria]

Whoa, whoa, whoa is right!!!!!! I have seen more ignorance, lack of information & also discriminatory attitudes against supposedly low functioning autistics on this site than I have encountered anywhere else in the real world. Many Aspergers folks - whether DX'x or self diagnosed - feel vastly superior & unrelated to "autistics", especially those with severe disabilities.

Honestly, I would have expected more from you wyverary. Please educate yourself before you join people like Offit. Or should I go join Autism Speaks?

And PLEASE check out my original post above with the link to a letter board - that actually links to an autie girl's website - & watch the Assisted Chat app for the iPad demo above. Also, check out the Rapid Prompting Method at halo-soma.org.

MOST OF ALL please watch this young boy using that same app ... & maybe spend some time reading his book or his blog. I dare say you might learn something.

 

[wyverary]

You're promoting anecdotes, I'm promoting rigorous science. It seems we are at an impasse, and I see no point in discussing the matter further.

 

[SignOfLazarus]

Honestly, I would have expected more from you wyverary. Please educate yourself before you join people like Offit...

And PLEASE check out my original post above with the link to a letter board - that actually links to an autie girl's website - & watch the Assisted Chat app for the iPad demo above. Also, check out the Rapid Prompting Method at halo-soma.org.

MOST OF ALL please watch this young boy using that same app ... & maybe spend some time reading his book or his blog. I dare say you might learn something.

I may possibly see an issue in communication here [funny right?].

Tia Maria- you are using the term "facilitated communication". I'm not 100% sure you are using it entirely appropriately here. The video you posted does NOT demonstrate facilitated communication, to be clear. Facilitated communication is when an individual is physically supported in pointing or gesturing to words/pictures/letters in order to communicate. So it's possible that much of the frustration seen in this thread- from any angle- may be due to conflation of terminology. Assisted technology is not facilitated communication. Just the letter board itself is a tool.

But the concerns about facilitated communication are valid- and where they come from are concerns for the individual with autism, not an inability to empathize with those who have more difficulty communicating verbally.The concern is that- even if unconsciously- the facilitator may be directing the person they are assisting instead of just supporting them.

If an individual is given an application or similar and they eventually are able to manipulate it themselves- that is not facilitated communication. They are using a tool to assist them in communication.
Given that the boards are often presented in the same conversations, it is very easy to assume they have to go hand in hand and in many conversations it is assumed that any assisted communication is facilitated communication, but it isn't. And wow, it's difficult to make sure I'm typing that correctly with the i's right next to the lower case l.

If we are all talking about different things but think they are the same because we call them the same thing, we are not going to understand responses. But given the complexity of the issue, it makes if it were in fact the case that everything just gets filed under one heading.

I'm not sure if that was actually the case here, just a guess I'm throwing out. Apologies if completely off the mark. ...and take my exit now...

 

[Tia Maria]

You're promoting anecdotes, I'm promoting rigorous science. It seems we are at an impasse, and I see no point in discussing the matter further.

Really?? Anecdotes? Well, that seems to be a convenient supposition for some on this site when it becomes, well, convenient. That is why I totally support the mapping of the DNA sequencing for autism - because it is science. Just as I always knew the vaccine quackery was just that, quackery, unbacked by legitimate scientific proof.

As for scientific proof, there is really none that Aspergers even exists. If it does exist, is it "neuro-diversity" or a medical brain disease, just as Alzheimers or Schizophrenia? All of these are in fact scientific questions, but politically incorrect to most here because they are deemed 'offensive'. But aren't all the people here & elsewhere who self-label as Aspergers basing their self diagnosis on nothing more than their own anecdotal evidence ... from their feelings & symptoms? Is that science? Yet the idea that a severely physically disabled autistic person cannot learn to manage their physical symptoms well enough to type on an iPad in order to communicate is pseudoscience?

Autism Speaks is actually focusing on rigorous science, while most members here not only strongly dislike that organization but also live their lives based on anecdote & trial by error. I am not criticizing or judging that at all, nor defending Autism Speaks in any way, shape or form. I am merely pointing out the stubborn, arrogant hypocrisy of it all. It's all just a little too convenient.

Yes, there is no point or purpose in discussing it further.

 

[Tia Maria]

I may possibly see an issue in communication here [funny right?].

Tia Maria- you are using the term "facilitated communication". I'm not 100% sure you are using it entirely appropriately here. The video you posted does NOT demonstrate facilitated communication, to be clear. Facilitated communication is when an individual is physically supported in pointing or gesturing to words/pictures/letters in order to communicate. So it's possible that much of the frustration seen in this thread- from any angle- may be due to conflation of terminology. Assisted technology is not facilitated communication. Just the letter board itself is a tool.

But the concerns about facilitated communication are valid- and where they come from are concerns for the individual with autism, not an inability to empathize with those who have more difficulty communicating verbally.The concern is that- even if unconsciously- the facilitator may be directing the person they are assisting instead of just supporting them.

If an individual is given an application or similar and they eventually are able to manipulate it themselves- that is not facilitated communication. They are using a tool to assist them in communication.
Given that the boards are often presented in the same conversations, it is very easy to assume they have to go hand in hand and in many conversations it is assumed that any assisted communication is facilitated communication, but it isn't. And wow, it's difficult to make sure I'm typing that correctly with the i's right next to the lower case l.

If we are all talking about different things but think they are the same because we call them the same thing, we are not going to understand responses. But given the complexity of the issue, it makes if it were in fact the case that everything just gets filed under one heading.

I'm not sure if that was actually the case here, just a guess I'm throwing out. Apologies if completely off the mark. ...and take my exit now...

Thank you SignofLazarus. You are absolutely correct & the term Facilitated Communication carries negative connotations to some - like Offit - in the autism community. But for those autistic advocates who are communicating via typing, they do not differentiate between the terminology & express distress over what many non-autistic "experts" promote.

The confusion is that a severely disabled autistic definitely needs some form of assistance in the beginning, as they get started, because it takes tremendous effort to master the necessary motor control etc... If you watch the short John Stossel documentary about Carly Fleischmann, her family describes the long & arduous process it took for her to communicate with them via typing on a laptop, despite the fact that she initially did it entirely on her own with no prompting or assistance. The boy in the above video clip has worked for years to get where he is today in terms of managing his anxiety, mastering manual dexterity, doing physical exercises & so on. And he received significant one on one help, & also support from his parents.

Thank you for taking the time to actually read & comprehend what I shared, as well as for watching the video. I have read several of your posts since you joined & have enjoyed them tremendously. I will be taking a break from AC now so wish you very, very well SignofLazarus.

How Carly F started communicating. She & Ido are only two of a long list of autie authors & bloggers.

 

[Gayda Collins]

I suspect that this young man would be an excellent candidate for art therapy. There are some good resources for that online, and I'd encourage you to check it out. You have a challenge, so good luck.

 

[AsheSkyler]

And I am completely oblivious to what the argument is about. Isn't it the goal between most humans to try to figure out the best way to communicate with each other? I think I've seen some apps for the deaf/mute-ish as well where they can peck something out and a little robo voice repeats the sentence for those who don't know sign language. Random thought: Why isn't sign language more commonly taught to the non-verbal autistics? I have heard those picture apps praised roundly by various parents and it's surely more universal than sign language. Is it an issue of dyspraxia? I'm picking up on references to dyspraxia. Is that the argument? Dyspraxia thwarting motor coordination and automatically condemning any from being able to use those picture or talking apps, or sign language??

 

[Tom]

Arguments and Fire... Baaadddd.

 

[Tia Maria]

No argument. I am not mad. I worded my original post above poorly ... & I am very passionate about helping non-verbal autie kids learn to type via assisted chat or Rapid Prompting Method. Sorry for being so testy. Have a good week everyone. And I love your sense of humor Tom. It is priceless. I do need to take a break though because I post too much.

 

[Grumpy Cat]

No argument. I am not mad. I worded my original post above poorly ... & I am very passionate about helping non-verbal autie kids learn to type via assisted chat or Rapid Prompting Method. Sorry for being so testy. Have a good week everyone. And I love your sense of humor Tom. It is priceless. I do need to take a break though because I post too much.

I just heard from someone that Tia Maria is taking a "break". Do come back Tia Maria. I miss you already.

You know if everyone would just say they were sorry now for bickering then we might be able to patch things up and start over again. We're going to have disagreements, but people shouldn't feel like they have to leave. I hate to see another NT gone since we have so few of them here.

 

[SignOfLazarus]

I just heard from someone that Tia Maria is taking a "break". Do come back Tia Maria. I miss you already.

You know if everyone would just say they were sorry now for bickering then we might be able to patch things up and start over again. We're going to have disagreements, but people shouldn't feel like they have to leave. I hate to see another NT gone since we have so few of them here.

Tia Maria seems ok to me.
I think if someone is taking a break, it doesn't mean they aren't ok. Sometimes people just need a little distance. This doesn't mean they are necessarily holding resentment or hurt feelings. Maybe they just want a break, go do something else for a little bit, come back feeling a bit refreshed with a new perspective. I do this quite a bit [FYI ]. I find it helps.

Tia Maria might really just be taking a break because it is what is best for her right now, and not as a slight to anyone else. That is my impression. I'm new around these parts but think it'll be ok.

 

[Grumpy Cat]

Tia Maria seems ok to me.
I think if someone is taking a break, it doesn't mean they aren't ok. Sometimes people just need a little distance. This doesn't mean they are necessarily holding resentment or hurt feelings. Maybe they just want a break, go do something else for a little bit, come back feeling a bit refreshed with a new perspective. I do this quite a bit [FYI ]. I find it helps.

Tia Maria might really just be taking a break because it is what is best for her right now, and not as a slight to anyone else. That is my impression. I'm new around these parts but think it'll be ok.

I understand what you're saying. Someone actually told me, though, that she told them she was taking a break because of what happened here. NT's don't come right out and say always why they're doing something. Her feelings were probably hurt. I had an argument once and my feelings were so hurt that I almost left here for good. I just hope this isn't the case with Tia Maria. That's why I was talking about apologies in another thread. I found out that Aspies rarely apologize because if they feel they are right then they shouldn't have to, but with NT's apologies are very important. The apology is for having the argument in the first place, then everyone starts over again and, if necessary, do like my Aspie friend says - agree to disagree. With the argument I had, the Aspie expected me to apologize even though I didn't feel I was in the wrong. This Aspie, however, did not apologize for her part in the argument (that even shut down my thread) and that left me extremely bitter. There are reasons why people are supposed to do things and there isn't any real "logical" reason why. Apologies fall in this category with NT's.

 

[SignOfLazarus]

...Someone actually told me, though, that she told them she was taking a break because of what happened here...

So it would make sense to ask her directly, yes?

 

[Grumpy Cat]

So it would make sense to ask her directly, yes?

Me and Tia got into a "disagreement" in another thread and I actually did it in a way so she knew we disagreed about the subject, but that I still wanted her to be my "small talk" buddy. I'd just PM her and let her know nothing was meant to be personal and you hope that she wasn't hurt by what was said. Since she's NT she may not come right out and say she was hurt because NT's sometimes also have a hard time talking about their feelings and stuff to other people. I haven't read the entire thread to know what happened, but if it was more than one person against her it would be quite upsetting. I had two people coming at me and I had to get off of here for awhile and to be honest with you - I cried because my feelings were so hurt. It was scary for me to come back too because I was embarrassed about the argument happening in the first place, but I had other Aspies wanting me back so here I am. I hope that some things I have said on this site have helped with communication issues between Aspies and NT's and that's why I decided to say something here.

 

[SignOfLazarus]

ok.
I just wouldn't want someone talking about me and said situation in a thread without clarifying the situation with me first- because if I'm taking a break it might be so that it all dies down while I'm away.

But I'm me and everyone else is everyone else. And um...
I don't know how to like, not come off like a jerk and express all of this. I wanted to like, be more clear about everything but the more I clarify the more I add to continuing the discussion so...
I don't know. I hope I'm not coming off like a jerk.
Anyway, it seems like you want everyone to be ok with being here and not feel like they have to leave. I want that too.

 

[Tia Maria]

I'm okay. THANK YOU so much Grumpy Cat for wondering about me, & for caring! It made me feel so good, & also smile.

And thank you SignOfLazarus for providing your very thoughtful insight. You should also know that you communicate, & express yourself, VERY WELL. And you do not come off like a jerk whatsoever. Quite the opposite in fact. I don't know what the opposite of jerk is, but it's a good thing for sure.

Thank you both.

 

[watersprite]

I'm new here, relatively, and while I can't agree with everything you say TiaMaria, (or people in general),it does seem to me you mean well and have a genuine interest.
Is it out of place or rude - or against a rule or something - to ask what happened? Because I am trying to learn what not to do and tend to worry that I've already said something.
If that makes sense.
Edited to add, that in my opinion the huge scope of the OP's issues and problems seem beyond asking for help on the internet. She stated that she is caring for a child, and is not the parent, and this sets off a bit of fear in me. So the tension of the disagreement combined with the fear was difficult, for me.