Autism stuff

[Sennex 1,903]

None of us want to derail Lee's PPR so starting this thread.

 

Both of our sons are Autistic. My son is 13 now, and he was diagnosed around the time he turned 5. We started getting him tested around age 4 because of some things that were happening.

 

My wife and I were pretty involved with the local area Special Needs groups for a while, and we have seen a lot of random things that I can try to explain or toss out there. We've done a ton of research and reading, but are far from experts. We have volunteered with Autism Speaks, Autism Awareness, and some local orgs as well. Personally I have grown to hate them all and have ceased working with any of them for the foreseeable future.

 

First few things that we always get asked and I will just answer straight away:

 

Vaccines do not cause Autism...... If you are an Anti-Vaccer, you are not smart enough, or capable, of making rational decisions about kids, and therefore shouldn't have any.

 

Autism isn't something that needs to be cured with some magic pill, or Ritalin, etc.....

 

Autism cannot be cured by beating an Autistic kid, or being more disciplined... Any kid that is "cured" from beating isn't autistic but is a brat, have fun wailing on them.

 

Many Autist's are perfectly able to make eye contact, and hold conversations.

 

Ask away!

[The3rdWalker 1,271]

Vaccines do not cause Autism...... If you are an Anti-Vaccer, you are not smart enough, or capable, of making rational decisions about kids, and therefore shouldn't have any.

I love you for this.

 

So a question, obviously there are a lot of challenges but what would you say was the hardest for you and your wife? 

[Rumelylady 188]

Both you and Lee mentioned using youtube and other videos as a way to relax your boys. That reminded me of how the youngest brother of one of my friend's used to watch Disney all the time and he would rewind the tapes to watch the same 10 - 30 seconds over and over again. Is that something either of your boys do at all? Just curious if that's a common thing.

[Drifter 851]

It bows my mind when I hear people talk about vaccines causing things like this. Just unreal what people believe to be true these days isn't it.

 

Just wondering how come you have grown to hate the organizations you mentioned?

[Sennex 1,903]

I love you for this.

 

So a question, obviously there are a lot of challenges but what would you say was the hardest for you and your wife? 

 

For me it would be dealing with my In Laws, and other folks that have only ever seen Rain Man, and assume that all Autist's are that character.

 

After that would maybe be helping my son realize that kids are assholes, and that regardless of what they tell him, he is NOT to blame for anything, and is not a bad kid. (Huge story around this and is ultimately why we pulled him out of public school)

 

Both you and Lee mentioned using youtube and other videos as a way to relax your boys. That reminded me of how the youngest brother of one of my friend's used to watch Disney all the time and he would rewind the tapes to watch the same 10 - 30 seconds over and over again. Is that something either of your boys do at all? Just curious if that's a common thing.

 

My son does it. I am not 100% sure why he does this, and have never been given a decent answer from a doctor. However this is what my wife and I (And some doctors, but not all), think is happening. My son will see a scene that perplexes him for whatever reason, and then he studies it. Sometimes that scene will go into his ToolBox, other times it is just part of a story. Still other times that scene will sit in his memory, absolutely flawlessly memorized, and he will ask my wife or I about it, 2 years later. (This happens A LOT!!)

 

I think he is just trying to understand emotions and how they work. Specifically Empathy, my son has 0 Empathy. I never realized how big the ability to empathize was until I started witnessing someone who didn't have it, and was incapable of really "getting" it/

 

It bows my mind when I hear people talk about vaccines causing things like this. Just unreal what people believe to be true these days isn't it.

 

Just wondering how come you have grown to hate the organizations you mentioned?

 

Autism Speaks is an absolutely HORRIBLE network. For me it is on par with the Susan B Komen ribbon people. They don't care about autism, they feel it can and should be "cured", with medicine, or some gene therapy. Up until recently they blamed vaccines for it. Not a single member of their "Board" is autistic, nor do they care about hearing from Autistics about how the org should be run.

 

Read this for more: http://smallbutkindamighty.com/2013/11/12/many-people-mad-autism-speaks-right-now/

 

Autism Awareness isn't bad per se, but I don't like Facebook Activism. The locals are all about pushing the Autism Awareness Day where everyone wears blue, they shun you if you don't. The sad part is once AA day is over, then none of them really care about Autism or research etc. The national level might be decent, but I never dealt with anyone above the local counties. 

 

The rest of the local groups are bible humpers. They believe god will cure Autism with enough prayer. They also didn't like when I pointed out if God had a master plan, then maybe my kid should be autistic and fighting the will of god through begging him to change something he planned was silly. (I used the same argument for abortion with them. so I might have cut my own throat in this case)

 

Autisitc Self Advocacy Network is decent - http://autisticadvocacy.org/

 

as is Autisim Partnership - http://www.autismpartnership.com/

[The3rdWalker 1,271]

Could I delve into your in-laws a bit and ask what the biggest issue was with them?

[Sennex 1,903]

My father in law likes to read the first few pages of a book(10-15), he then stops reading, as he feels he has a full understanding of the book and what the book is discussing. 

 

He also will only read one book on a topic, as he only needs to read one before becoming an expert on that topic. This makes him a willful active participant in his own ignorance.

 

He was a firm believer that if we just didnt "Spare the rod" as it says in the bible, then we could cure our sons Autism.

 

After that he decided to speak up about how my son would never be a "Productive white american" and how he would end up being a medicaid/welfare monkey living in a home when he is 18.

 

I used to attempt to be civil, and I would let him spew his vitriol, just to make nice with my wife. Sadly I finally snapped off one day. My FiL has seen and interacted with my son three times ever in my sons 13 years, so he doesn't really have any metric to use when it comes to my son, or what his deal is. I pointed this out forcefully and rudely about 4 years ago. We don't really speak to each other anymore.

[The3rdWalker 1,271]

Christ that is brutal. Thanks for sharing.

[lepercolony 275]

After that he decided to speak up about how my son would never be a "Productive white american" and how he would end up being a medicaid/welfare monkey living in a home when he is 18.

 

. . . holy fuck.

[Sennex 1,903]

It takes all kinds.

 

That quote though, that is pretty much verbatim. It was one of those phone calls that was etched in my mind from the moment it happened.

[Drifter 851]

That's terrible that anyone, especially a family member would say something like that. Defiantly something you can't just shrug off and forget I'm sure, but like you said it takes all kinds in this world, some you just have to shake your head and ignore what they say.

 

Sucks that some of those organizations are that way. Seems some of them just have their own agenda which is not in the child's best interest. Something that you sadly find to often. My 34 yr old cousin was born with really bad cerebral palsy, she can't speak or walk these days. Her parents do a lot of work with a number of CP organizations, Shriners and other things for children with handicaps/conditions and for the most part all the ones they work with are really good groups, but I know there are some out there just try to push their own agenda or just money driven etc etc.

[lepercolony 275]

it just honestly makes me sad.  the guy's unwilling to educate himself on his own grandson, and as a result he'll never know how truly fucked up his attitude is.  smh.  sorry you have to deal with that shit, dude.

[Sennex 1,903]

No reason to be sorry man. Honestly.

 

Its not worth the effort or Brain space on anyones part. I know my wife and I don't sweat it, it just is what it is. We minimize the level of interaction he has with our son, and we move on.

 

I think part of him realizes how fucked up it is, but then part of him is incapable of change. Some folks are like that. I do believe he has mellowed over the years, the stories my wife has of growing up under his roof are sickening, and you can see that side of him. It helps that we live so far away.

 

Also, side note, it is directly written into our "will" that he will NEVER ever get Alex for any reason, there is a list of 8 families in front of him. Hell, I'll add your name to the list to make it 10. 

[cyberninja2601 1,106]

Well my daughter is Autistic as well and has Asperger's. She is very intelligent and masks it well. Her biggest problems are social issues.

 

She's almost 18 and has been accepted to University so it can get better.

 

What we had to do is a lot of socialization in activities that she enjoyed. Cartooning, swimming and karate worked for us. One of the reason we have the dogs and do the agility training with the dogs is that she does love animals as well

 

 don't give up, but it's an up hill battle for sure

 

Anyways good luck with your boys

[Sennex 1,903]

Well my daughter is Autistic as well and has Asperger's. She is very intelligent and masks it well. Her biggest problems are social issues.

 

She's almost 18 and has been accepted to University so it can get better.

 

What we had to do is a lot of socialization in activities that she enjoyed. Cartooning, swimming and karate worked for us. One of the reason we have the dogs and do the agility training with the dogs is that she does love animals as well

 

 don't give up, but it's an up hill battle for sure

 

Anyways good luck with your boys

 

You should share your thoughts on the whole thing. I am curious about how things are different/ similar

 

I've honestly never met a girl/ woman with Autism before. 

[GazzaGarratt 11,062]

Good start for the thread Bart.

I'll add to this abit about my son to add more context for the thread.

Dax is 6. We managed to get an early diagnosis when he was 2. Its not rare but uncommon at early ages to get diagnosed but we noticed how he was with interaction early doors, his repetition on lots pf generic traits for autism such as lining up cars, trains, night terrors, etc.

We wanted the 'label' because we believe that to get help you need confirmation. By getting a diagnosis it relaxed us as we thought we could get help.

Dax seems to want to do the things that will cause most anxiety. His complexity means he does want to interact but he pretty much needs to be the leader. And his rules. Number 1 in the queue. Eveything, and i mean pretty muxh everything you say or do should be tailored to him e.g. learning, activities, eating.

He has an awful diet- bread and butter sandwiches for breakfast, lunch, dinner. Eats a few bananas, the odd apple and specific chocolate. Thats one of the hardest things to break/get him comfortable with new food. He did have night terrors alot buy that has decreased. He is on melotonin though cos usually if he is tired we notice his behaviour dips at school. He isn't in any way a violent aggressive person. However he instantly reacts as he doesn't connect with emotions. And these reactions can be aggressive. He knows what to say and do afterwards - say sorry. Cos thats literal. But he won't retain the trait of not doing it again, like climbing the dinner tables at school.

Family mostly don't get it. They're supportive but for a long time didn't get you don't just get 'cured'. What to say, what to do is important. You jave to be on it, or he could react, run away, get anxious, hit himself, throw his glasses, etc.

I can add more when i have time but ask away.

Oh, and he's going to a Special needs school in Sept as they haven't got the resources at his primary school to give him the support he needs. Always down to money in the end.

[cyberninja2601 1,106]

You should share your thoughts on the whole thing. I am curious about how things are different/ similar

 

I've honestly never met a girl/ woman with Autism before. 

 

 

 

Ok

 

I don't know what you would like to know. Here's a crap load of stuff

 

 

 

So firstly it's not surprising that you never met a woman with Autism before.  From what we have been told girls personalities in general make diagnosing Autism more difficult. 

Girls at a young age tend to be less involved in things like sports and group activities so their interactions with peers are different.

Girls tend to do a lot of individual activities so some of the issues are less noticeable.

 

With regards to school and ability we have been lucky and unlucky in some ways. We are fortunate that our jobs had excellent health plans so we were able to get a number of psychological assessment done to diagnose the issues.

 

Bev's strengths and weaknesses were all assessed in grade 5, 7, 9 and 12. They have remained fairly consistent. 

 

She has a very high IQ (168) but a rather low social IQ. So anything that is matter of fact (science and math for example) is less of a problem.

 

Things like languages and writing essays are a struggle. 

 

Anything that requires an analysis where you have to read between the lines is a disaster. So for example when she is asked to explain what happened in a Shakespeare play,  the results are technical correct but not what was expected.That gets her in trouble often because people think she is being  belligerent or sarcastic. 

 

However we found when than is explained to teachers before school starts there are a bit more reasonable. Also because she is intelligent people think she is lazy or doesn't care because the flaws are not obvious

 

We spent a lot of time with activities and tried to do things that build on success to build confidence.

 

For example Karate was great because of the belt system and progression. Kids can see tangible progress.

 

Swimming with the different bages was the same. She has a black belt and her national life guard. However you also have to be able to invest the time because it probably will take longer and be willing to explain your child's behavior without being apologetic to instructors

 

There have been situation where Bev simply decided she would not do something. Then she completely shuts down. So much so that we have had people ask us if she can hear or if she speaks english. However once an instructor knows about it, they know to move on and to some degree ignore her as long as she is not a safety risk. Then the following lesson she's fine again.

 

That's difficult for real world situations (jobs for example). However to her credit she seems to know not to do those things when it matters. 

 

We've also notice that it is usually best if I deal with a problem first. I am much calmer than my wife and I don't panic easily. You guys probably need to determine if there is a go to person at home.

 

Bev confides in her older brother a lot and we made sure that he understood at an early age that he was expected to be there for her. 

 

Also as I said the dogs made a huge difference. That helped a lot with empathy. Also if you are having a shit day and you are mean to the dog, as long as you don't hurt the dog all is forgiven the next day.

 

Herding dogs are great for this. We've had Shetland sheepdogs which are small and are not intimidating, Australian shepherds which are very high energy by just about to most loving dog you get and border collies which are probably smarter than most people.

 

I think it made a lot of difference to the way she developed.

 

We also made sure she has chores and responsibilities. She's does it fine.

 

We also found that giving an example of an expectation helps. For example when we say clean up your room. Our expectation of clean is not the same. If she sees it first. Then it is less of a problem. 

 

We also identified obsessive behaviors and made sure that she understands that she needs to limit them. She's been taught to use it as a "reward" system. She loves to draw and is quite good at it. When all of her school work is done correctly (most work now has problems with solutions) she draws for an hours. That's something that can be used with a small child. You do need to hold your end of the bargain however for it to work. Don't say you will play something and then get to busy or tired to do it. It will not take long for them to  call bullshit. 

 

Anyways that what worked for us. Every kid is different so there is no magic solution

 

You can ask specific questions of you want

[Sennex 1,903]

My sons diet is Chicken/ chicken nuggets, french fries, bacon, apples, any green veggie, and thats about it. We can get him to eat spaghetti and scrambled eggs, and he just tried toast the other day. But food is such a chore! We have been working with him on trying one new food month a month, and just recently he shortened it to one a week as he wants to be older, and feels food is the key.

 

Also, we noticed a huge difference in how his day goes based off of what he eats.

 

We have a dog we let our son pick out about a year and a half ago. She was about 8 weeks at the time, our goal was to get a puppy and then put her through some certified training for being a service dog. That didn't work out as my son picked the biggest most docile goober in the pack. Terra has absolutely zero aggression or drive, and is so meek that she is damned near a mirror of our son. Which isn't something you really want in a Service dog, they have to have some  sort of confidence and drive to be able to take action.

 

Still though, my son is decent with her, he just hasn't found his "Voice" yet, so she tends to not really pay attention to him.

 

We had tried Karate and The Boy did really well with it, then the place jacked their prices through the roof and we just couldn't afford it anymore. I am trying to teach my son archery now though, and that seems to be going well.

 

Bev actually sounds a lot like Alex. He is amazing with Math and Science, and decided about 3 years ago now that he wants to be a Physicist when he grows up so that he can discover wormholes and alternate dimensions. The kid is a firm believer in String Theory and all things related to it. He can even explain it and draw diagrams of it. 

 

Anything involving Time Travel, dimensional travel, or Wormholes he immediately latches on to. Things like Stargate SG-1, Doctor Who, etc... have replaced his watching of Thomas and other Cartoons.

 

English and History are right out. He is decent at Mythology though, because I always reference that this God was the basis for this super hero.

[cyberninja2601 1,106]

Don't know what else to tell you

 

We were lucky with the dogs. One of the reason we picked Herding dogs was their trainnability and personality.  Toby (Picture on my profile) is convinced that he is a human and watch over the girls 100% of the time. But that does not help you with your dog

 

I don't know much about archery, but I am sure you can come up with a goal and progression system like the belt system in Karate. Giving Bev goals and having her achieve them was very helpful. 

 

Good luck with the diet. I have no doubt it is a critical part to deal with the issues. However it's not a  problem we had to address

 

It's not uncommon for Autistic people to migrate to science and math. There is order to science and math. Things are not subjective like other subjects. Either the math works or it doesn't. The good news is that it happens to be a very employable field. It's also a field that is tolerant of people with quirks, in many ways it embraces it.  Some of the behavior is actually ideal for it (doing the same thing again and again the exact same way for example is critical to running certain lab experiments).  Many autistic people can do that with ease. People who aren't need a check list and procedure and quite often make mistakes. 

 

Computer science is another field as well, however I like to lump that into math and science. 

 

Also there a pretty good list of famous people who have or are believed to have it. I refer to the Asperger one. It did give Bev some encouragement when she was younger and saw some of the people on the list

 

http://www.disabled-world.com/artman/publish/article_2086.shtml

 

Albert Einstein

Bill Gates

John Nash

Jim Henson

Abe Lincoln 

 

They kind of did alright. 

[Commander_Undies 618]

Can someone please explain what aspergers is? Once upon a time, I had a friend that had that and she always said she was crazy and had papers to prove it. Didn't know if she was referring to the aspergers or if she was just being a dramatic teenager.

[cyberninja2601 1,106]

It's a form of Autism which has a hard time dealing intangible things and emotions. Asperger people often lack the ability to understand facial clues, sarcasm, emotions, empathy. They simply cannot "read between the lines"

 

Think Sheldon Cooper from the big band theory and you pretty much got it. The line that your friend used is actually a variation from the show. Obviously Asperger people are quite as bad as Sheldon since it's a TV show but you'll get the idea.

 

Bev isn't that server but has many of the issues I mentioned. She's actually very caring and warm which isn't typical.

[Rumelylady 188]

Jerry Espenson from Boston Legal is another TV character with Asperger's. 

[Sennex 1,903]

I had read back in January that some groups were going to start using Google Glass for Autistics. It looks like it is taking off

 

http://ww2.kqed.org/futureofyou/2016/04/08/google-glass-flopped-but-kids-with-autism-are-using-it-to-learn-emotions/

[cyberninja2601 1,106]

I posted this elsewhere but it got lost with the latest wipe of information

 

 

MY little biochemists graduation picture from Wednesday. Given the challenges she had, I couldn't be more proud

 

[Rumelylady 188]

Congrats to her and your family!