Former Lurker.. Autism conversation

[terry]

My son (he will be 7 in April) is nonverbal also, with receptive language skills that are fleeting (one day he is "on, the next he is deer in the headlights).   He has a seizure disorder which has come to the front burner these past few months (he had a few febrile seizures when he was 2, and 4 years old but nothing that warranted medication).   I have done a lot of research on them and came across a recent study that shows spikes in brain waves (which my little guy has) disrupts speech and language as there is a microsecond delay in those critical neuro connections.    A great deal of children on the autism spectrum have irregular brain wave activity, which makes sense they have a corresponding speech and language delay.

I have to keep direction very short with my son  -- "coat on", "brush teeth" etc.   He is super smart, he just has a delay in processing the information you provide him.  Keeping it short yields the best response from him.   

What you describe though is very interesting.   "Go eat breakfast" is abstract, "your cereal is on the table" is very concrete.    Is your son Aspie (super high functioning, brilliant, but social and abstract is difficult)?   H5 to you for tackling that language issue mom and sharing that here.    In the world of special needs, parents helping parents is how we get through this.   

I learned the declarative language thing from Dr. Guttstein's Relationship Development Intervention.   Schade sent me a link to the RDI website RDI link  when Tim was first diagnosed.   RDI has a lot of good ideas and they worked well for Tim.   They are pretty simple too.    Mostly just taking time to keep the child engaged and focused on you, voluntarily.   The bad part about Dr. G and RDI, is that he has tried to keep all his ideas proprietary.   The website used to be completely open.   They had weekly chats and message boards.   In the last few years he has tried to make it so the only way to get the information is to hire an expensive consultant, who is trained at his facility.   You can't access the email lists, message boards or chats unless you have a consultant.  He is also very, very anti ABA.   He claims ABA makes your child a rote little robot and damages the things that RDI is trying to teach.   A combination of ABA and RDI worked well for Tim.

I have heard that seizures, immune disorders and gastric issues all go hand in hand with autism.   Tim has no physical issues at all.   He has maybe two sick visits to the ped in his six years of life.   We did get an MRI of his brain when he was first diagnosed, because he had a brother with cancer, a cousin with a chiari malformation and a very, very shell shocked paranoid mother.
 
I think Tim may just be a late talker.   He was always affectionate, engaged and sweet.  He just didn't communicate the way other kids do.  He had words at the age of 1, but the words were 'yellow' or 'light' no social words like 'hi', 'bye', 'mom' or 'dad'.   He did not converse at all at age 3, but his receptive language was always good.  He fits what Thomas Sowell calls a late talking child in the book "The Einstein Syndrome".   I'm not crazy about the name. Tim is bright but he is not Einstein.   He loves numbers and thinks about them all the time but he's not doing Algebra in kindergarten.

Tim has all the symptoms of being on the spectrum, but the symptoms are very, very mild.   Most people wouldn't notice them.  He's sensitive to sound and has a vacuum cleaner phobia.   He gets very anxious at the sight of one.   Weird .. but unless you chase him with a vacuum, you wouldn't notice it.   He does repetitive motions and stims but only when he's bored.   If I say "Tim, that's annoying, please stop" ... he will. If it's not bothering anyone I just let him be.   At night when he's winding down for the day, he will just pace or hop back and forth.  He doesn't do it at school or in public.  His biggest issue is rigid thinking.   He learns rules or makes rules and gets very annoyed when things don't follow them.   He's learning to read and at first, the fact that some consonants like 'c' or 'g' can make two sounds, really bugs him.   Words that don't follow the rules he knows, really bug him.   He will argue with me, but eventually he'll get over it and accept.   This rigidity becomes a social issue if he has a wild and creative playmate, a playmate that is not as fond of rules as he is.   Then he can get bossy and frustrated.    It's one of many reasons I miss my middle child,  Andy so much.    Andy was a total free spirit and would have challenged Tim at every opportunity.

[formerlurker]

ABA has come a long way since it's early days.   Incidental teaching is absolutely imperative to generalize skills and is an ABA protocol.   Rote learning (discrete trials) are very necessary for some children to learn critical skills such as ready and attending skills, then they generalize it across settings by incidental teaching formats.    My son attends a private school which follows ABA protocols.   It is a good fit for him as he is low functioning.  He is making good and steady progress using this teaching methodology.     High functioning children are a challenge as their educational plan really must be individualized to their unique needs.   Boilerplate programming isn't going to cut it.

I did read Thomas Sowell's book many years ago when my son had very limited words.    Dr. Greenspan has a great series of books also.  His floortime protocols are especially good for the high functioning child.   

Your son does sound super high functioning.   Have you ever had a neuropsych eval done on him?   The strict adherence to structure and stimming could become an issue as he gets older (as they get older their quirks stand out more to their peers -- Kindergarteners and first graders don't really notice the quirks, they do as they develop more), although he does appear to be pretty well mainstreamed.    How are his play skills with peers?   The interventions you put in place at a young age seems to have yielded some pretty fantastic results.   I love hearing the success stories,  they give you hope you sometimes need when you are having a really challenging day (month, year    ...).

[formerlurker]

Did you lose a child (hugs)?    I don't want to bring up difficult memories for you if you rather not talk about it.   

[terry]

Did you lose a child (hugs)?    I don't want to bring up difficult memories for you if you rather not talk about it.   

I did.  It's not painful to talk about.   I probably could be accused of talking about it too much.   Andy died in February of 2005.  He was 7.  In 1999 when he was 20 months he was diagnosed with kidney cancer.   They removed his kidney, gave him radiation and chemotherapy.   It all went like clockwork.  He had very few side effects from treatment and the cancer never returned.   He had a very happy, healthy 5 years, from 2000 to 2005.

In 2005, he had what appeared to be a stomach virus.  Less than 24 hours after saying "hey mom I don't feel so good", he had a seizure and died.  The caused of death was a strangled small intestine, caused by scar tissue, that resulted from the surgery that he had in 1999.    It is not at all unusual for these children to have bowel obstructions, but apparently it is rare for them to be fatal so suddenly and so quickly.
Andy's site, check out the 'Andy memories' to get an idea of his little quirks.

Tim was 2 and 1/2 when Andy died.   I'm sure that Andy's death and the impact on our family exaggerated Tim's symptoms of autism.   Tim stopped talking altogether, which led to his evaluation and diagnosis.  I think the exaggeration of symptoms led to a bit of an over diagnosis. 

The over diagnosis worked in our favor.   First it made me stop and realize that I still had two children (I have a 14 yo boy, too) that needed me very much.   It made me realize that I had to focus on them and accept that there was nothing more I could do for Andy.   The diagnosis also got Tim 23 hours of one on one ABA therapy in our home for 18 months, which is why we are where are now. 

A happy, albeit quirky little six year old in a typical kindergarten class.

Interestingly, Andy may have also been on the spectrum.   He had the same repetitive, sort of stimmy behavior that Tim has.   They used to hop back and forth together     That's one reason I didn't think it was unusual when Tim did it.   Andy also totally missed social cues, some times he was inappropriately affectionate.   He figured everyone loved him and everyone was his best friend, until they proved they weren't.   You had to work hard to get Andy to not love you.

It's really cool that you have found a school that works for your child.  I read about so many parent's fighting with the public schools to get them to make even the simplest accommodations.  It's one reason, I think that if the state is going to be in the business of funding every child's education, they should use vouchers and allow parents to choose the best educational situation for their child.  It would also require the schools to be more competitive.

Tim goes to a private Catholic school.   It's the same school his older brothers went to/go to.  They don't do official IEP's but they really listen to the parents and treat the children as individuals.   It's a small school, so they know the children.   

[formerlurker]

You have had one hell of a road my lady.   I am so sorry for your son.   You are an incredibly strong individual and an inspiration to all parents.   Your son is very lucky to have you.   

I agree with you on the vouchers 100% and public school districts.    My niece has dyslexia and has been in Catholic School since she was 5 years old (she is a junior in high school).   The small classes coupled with the curriculum is a good fit for her - she is an A/B student.   She wouldn't have faired as well in public schools.   

[SaintLouieWoman]

I learned the declarative language thing from Dr. Guttstein's Relationship Development Intervention.   Schade sent me a link to the RDI website RDI link  when Tim was first diagnosed.   RDI has a lot of good ideas and they worked well for Tim.   They are pretty simple too.    Mostly just taking time to keep the child engaged and focused on you, voluntarily.   The bad part about Dr. G and RDI, is that he has tried to keep all his ideas proprietary.   The website used to be completely open.   They had weekly chats and message boards.   In the last few years he has tried to make it so the only way to get the information is to hire an expensive consultant, who is trained at his facility.   You can't access the email lists, message boards or chats unless you have a consultant.  He is also very, very anti ABA.   He claims ABA makes your child a rote little robot and damages the things that RDI is trying to teach.   A combination of ABA and RDI worked well for Tim.

I have heard that seizures, immune disorders and gastric issues all go hand in hand with autism.   Tim has no physical issues at all.   He has maybe two sick visits to the ped in his six years of life.   We did get an MRI of his brain when he was first diagnosed, because he had a brother with cancer, a cousin with a chiari malformation and a very, very shell shocked paranoid mother.
 
I think Tim may just be a late talker.   He was always affectionate, engaged and sweet.  He just didn't communicate the way other kids do.  He had words at the age of 1, but the words were 'yellow' or 'light' no social words like 'hi', 'bye', 'mom' or 'dad'.   He did not converse at all at age 3, but his receptive language was always good.  He fits what Thomas Sowell calls a late talking child in the book "The Einstein Syndrome".   I'm not crazy about the name. Tim is bright but he is not Einstein.   He loves numbers and thinks about them all the time but he's not doing Algebra in kindergarten.

Tim has all the symptoms of being on the spectrum, but the symptoms are very, very mild.   Most people wouldn't notice them.  He's sensitive to sound and has a vacuum cleaner phobia.   He gets very anxious at the sight of one.   Weird .. but unless you chase him with a vacuum, you wouldn't notice it.   He does repetitive motions and stims but only when he's bored.   If I say "Tim, that's annoying, please stop" ... he will. If it's not bothering anyone I just let him be.   At night when he's winding down for the day, he will just pace or hop back and forth.  He doesn't do it at school or in public.  His biggest issue is rigid thinking.   He learns rules or makes rules and gets very annoyed when things don't follow them.   He's learning to read and at first, the fact that some consonants like 'c' or 'g' can make two sounds, really bugs him.   Words that don't follow the rules he knows, really bug him.   He will argue with me, but eventually he'll get over it and accept.   This rigidity becomes a social issue if he has a wild and creative playmate, a playmate that is not as fond of rules as he is.   Then he can get bossy and frustrated.    It's one of many reasons I miss my middle child,  Andy so much.    Andy was a total free spirit and would have challenged Tim at every opportunity.

My favorite little girl in the world was diagnosed with Asperger's. She's fairly high functioning, has made remarkable progress due to the untiring aid of her mom and dad. She's gone from a child who didn't speak much to the little girl who won't leave Santa, telling him everything she wanted for Christmas in intricate detail. She formerly wouldn't look into the camera; now she loves having her picture taken.

She does follow that rigid thinking. When at her grandmother's house, she always wants to play board games. She's always the teacher and does little polls, asking "who wants to .......?" She does rattle off all the rules.

Her mom is working with her to somehow get beyond some noises that terrify her, such as the sound of a toilet flushing in a public restaurants. She's making progress there, too. Bribery seems to help. 50 cents buys trying a new food. She doesn't like many foods and is very tiny.

She's been doing the repetitive motions for so long, but I suddenly realized after reading your remarks that she hasn't been doing it as much lately.

She's very good verbally. Her vocabulary is astounding for such a little girl (she's 6). But math isn't her forte. She's getting tutoring for that.

I applaud anyone who does so much to help their children. Terry, you are a very strong person. God bless you.

[terry]

My favorite little girl in the world was diagnosed with Asperger's. She's fairly high functioning, has made remarkable progress due to the untiring aid of her mom and dad. She's gone from a child who didn't speak much to the little girl who won't leave Santa, telling him everything she wanted for Christmas in intricate detail. She formerly wouldn't look into the camera; now she loves having her picture taken.

She does follow that rigid thinking. When at her grandmother's house, she always wants to play board games. She's always the teacher and does little polls, asking "who wants to .......?" She does rattle off all the rules.

Her mom is working with her to somehow get beyond some noises that terrify her, such as the sound of a toilet flushing in a public restaurants. She's making progress there, too. Bribery seems to help. 50 cents buys trying a new food. She doesn't like many foods and is very tiny.

She's been doing the repetitive motions for so long, but I suddenly realized after reading your remarks that she hasn't been doing it as much lately.

She's very good verbally. Her vocabulary is astounding for such a little girl (she's 6). But math isn't her forte. She's getting tutoring for that.

I applaud anyone who does so much to help their children. Terry, you are a very strong person. God bless you.

Bribery does help.

I have also found that exposure to things that cause a problem in small, controlled doses has helped Tim.

He got upset when I had to take a detour, when driving him to school.  After that I would just go a slightly different way, just to show him it wasn't a big deal.

We will have waffles for dinner.  He will object "That's a BREAKFAST food", but then he gets over it.  I try to challenge him into being more flexible, but I try hard not cross the line to the point of making him have a complete meltdown.

If Tim got hung up on board games, I'd bring some other kind of game and say "we're going to play something else today".  If that caused a meltdown, I might pull back a bit and say "we'll play a board game, but I get to make the rules this time".   Tim was a little obsessed with cars last year.   I told everyone at Christmas, don't buy cars, buy games that involve other people.   If you get him legos, make sure there are little lego people in the kit.

It's a balancing act, but it's what most parents do for their kids.  I see it as the same as when a child doesn't do well with math or reading, you support them with extra help.   If a child doesn't do well with social things, you have to find ways to support him and teach him things that may just come more naturally to other children.

[Schadenfreude]

I am being uncharacteristically quiet on this topic. At one time I was full of hope and never passed up an opportunity to give encouragement to other parents who were raising children with autism. I still believe that there are a lot of good therapies and treatments and I only wish that the medical community better managed the treatments for autism.... it seems for the most part that it is left up to the parents to not only figure out what is needed, but also to bear the brunt of the financial burden.

The last 2 years have been brutal for us. That's not to say that every child with autism will experience the same set back as my son did, but I caution people that the adolescent years can be quite rocky and unpredictable.

I wish everyone the best, you all are heroes. 

[formerlurker]

I am being uncharacteristically quiet on this topic. At one time I was full of hope and never passed up an opportunity to give encouragement to other parents who were raising children with autism. I still believe that there are a lot of good therapies and treatments and I only wish that the medical community better managed the treatments for autism.... it seems for the most part that it is left up to the parents to not only figure out what is needed, but also to bear the brunt of the financial burden.

The last 2 years have been brutal for us. That's not to say that every child with autism will experience the same set back as my son did, but I caution people that the adolescent years can be quite rocky and unpredictable.

I wish everyone the best, you all are heroes. 

A great deal of the parents I speak to whose children are in residential all point to the puberty years as the year their sweet boys turned aggressive and uncontrollable.   Residential is my biggest fear and I obsess about it pretty regularly.    My son's BCBA assures me that she doesn't see that being something he will need (over 20 years experience working with low functioning severe autism).  My son is extremely sweet, affectionate, trusting and does not have an aggressive bone in his body.   I am sure that most parents whose children are in residential said the same thing about their little guys when they were six years old.  (  )

My son goes to one of the best schools in the country for autism.   He gets 30 hours a week of ABA at school, and I pay for services at home.    He is making great progress, but I forever worry about him.    My hope is to keep him out of residential, and provide him with the skills he needs to be a productive member of his community. 

One day at a time.   

The DoD was given a very large grant to research autism and it's causes.   I am very hopeful for their findings.   Boston Children's Hospital in collaboration with Harvard Medical School did a genetic study on autism which my son was a part of.   Their findings were that the genes they isolated for autism (there are many not isolated yet) are not damaged as you would see in other neurological disorders.  They are simply not active, or "turned off."     Intense stimulation (with therapies such as ABA) have been successful in turning these genes back on.    This is amazing news as they have determined that autism may not be an incurable neurological disorder.   Their next step will be to develop a drug which will immediately turn the gene back on (as opposed to years of stimulation).    I remember first hearing about this on the morning news and crying like a baby.   I am usually very  about the articles that claim "cures."   I actually have hope now they are getting closer.   

I feel like I have obtain a PhD in autism and special education, I spend so much attending workshops, training, research, etc.    Parents are the only advocates their children have (and that goes for typical children also).   We have to make sure we are overqualified for the job as they only get one shot in life. 

Sigh, I could write a book....

[terry]

I am being uncharacteristically quiet on this topic. At one time I was full of hope and never passed up an opportunity to give encouragement to other parents who were raising children with autism. I still believe that there are a lot of good therapies and treatments and I only wish that the medical community better managed the treatments for autism.... it seems for the most part that it is left up to the parents to not only figure out what is needed, but also to bear the brunt of the financial burden.

The last 2 years have been brutal for us. That's not to say that every child with autism will experience the same set back as my son did, but I caution people that the adolescent years can be quite rocky and unpredictable.

I wish everyone the best, you all are heroes. 

I think about you, your boy and what you've been through all the time.   It's not the same but I get where you're coming from.

We got a difficult and devastating diagnosis with Andy.  Then, when Andy was in those years between 2000 and 2005, things were as good as they could possibly be and I would always offer his story as a story of hope for parents of kids newly diagnosed with cancer.  Then BOOM ... he was gone.   Even though his cancer never came back, it's not exactly the story of hope and happy endings that it had been.

So I worry with Tim.   We got a difficult and devastating diagnosis again and again things are as good as they possibly can be with him.  But is the rug going to be pulled out again.   I hope not, but the worry is always there.   Although it's not overwhelming, because I have learned from Andy that the worrying does not stop the bad thing from happening.   We just have to enjoy our children as they are and provide the best support for them that we can.

FL, I found this interesting article recently about a cure.   It was of interest to me because of the link between cancer and autism.   I know of several children that had both.   I know of several more children with cancer that have or had autistic type behaviors (including Andy).   When the children are survivors, often any behavior issues after treatment are thought to be due to treatment.   In many cases like learning disabilities they probably are due to treatment, but I wonder about the behavior issues.   I especially wonder about it with children who are diagnosed and treated at very young age. 

Anyway I found this article interesting..
Autism and cancer share genetic roots

[formerlurker]

Thanks for the article link Terry!