OT: My kid diagnosed with autism spectrum disorder

[RuLaw2004]

My 3 year old was just diagnosed with autism spectrum disorder.

He was born at 24 weeks (very premature) and has a number of developmental delays associated with that (feeding issues, speech delays), but it seems that he meets sufficient criteria for the spectrum disorder diagnosis.

I just wanted to see if anyone has kids or family members with autism spectrum disorder, or any insights to share.

Thanks.

 

[RU4Real]

Originally posted by RuLaw2004:
My 3 year old was just diagnosed with autism spectrum disorder.

He was born at 24 weeks (very premature) and has a number of developmental delays associated with that (feeding issues, speech delays), but it seems that he meets sufficient criteria for the spectrum disorder diagnosis.

I just wanted to see if anyone has kids or family members with autism spectrum disorder, or any insights to share.

Thanks.

My autistic son is now 20. I'd be more than happy to talk to you.

 

[RutgersUnion]

There is a great program on Douglass if you live in the area. One of the top in the state.
Posted from Rivals Mobile

 

[RU4Real]

Originally posted by RutgersUnion:
There is a great program on Douglass if you live in the area. One of the top in the state.
Posted from Rivals Mobile

All such statements should always be placed in context to how the individual programs match up to the child's needs. Different kids have different educational requirements, and those requirements can vary quite a bit. DDDC (Douglas Developmental Disabilities Center) is a very good program but for some specific, individualized needs there may be other programs which are better, while being "lesser known", so to speak.

 

[RuLaw2004]

Thanks RU4Real, I may take you up on that offer.

Thanks for the suggestion RutgersUnion. We currently have my son in an ABA early education program, with an IEP tailored to his particular needs, just 5 minutes from home. He seems to enjoy it and is making some progress, but we realize that we're very early in this process.

 

[krup]

Both of my sons are on the spectrum and were diagnosed at about 3 years old (11 and 13 now), I would be glad to answer any questions you had, although my specific experience with services is eastern PA.

I would say that the program you are in sounds fine (as ABA is the method his teachers when he gets to school will most likely use), but also consider outside programs for anything from adaptive sports to music therapy, as they will be less rigid and help develop the "dynamic" connections that are also needed for social development.

 

[CranfordKnight]

My 13 year old nephew on the spectrum presents with OCD-like symptoms, ritualistic behavior. Definitely developmentally delayed, undersized, looks and acts like an 8 or 9 year old, with intermittent explosive episodes. But also very intelligent. The emphasis of treatment is stabilizing his mood and trying to mainstream him.

My 6 year old nephew is more of the classic non-communicative autistic.

It's a wide spectrum with lots of different treatments. Expect a lot of differing opinions about what's best, including family, spouses, parents, counselors, doctors, school administrators, etc. who all have his/her best interests at heart, but will be frustrated by the situation.

 

[LocalDC]

check out food related issues, particularly gluten and dairy
consider brain balance therapy
neurotherapy when he is old enough
get a thorough functional neurological evaluation and metabolic assessment
(he asked for suggestions: those who think these are ridiculous ideas-and I know who some of you are-I hope you keep it to yourself and not discourage him from getting potential help)

 

[RU4Real]

Originally posted by CranfordKnight:
My 13 year old nephew on the spectrum presents with OCD-like symptoms, ritualistic behavior. Definitely developmentally delayed, undersized, looks and acts like an 8 or 9 year old, with intermittent explosive episodes. But also very intelligent. The emphasis of treatment is stabilizing his mood and trying to mainstream him.

My 6 year old nephew is more of the classic non-communicative autistic.

It's a wide spectrum with lots of different treatments. Expect a lot of differing opinions about what's best, including family, spouses, parents, counselors, doctors, school administrators, etc. who all have his/her best interests at heart, but will be frustrated by the situation.

Fact.

As a parent of an autistic child, you will be forced to become a pediatrician, a neurologist, a behavior therapist and a pharmacologist. Shit will get weird. We had our son in a program locally for 10 years, the first 7 of which were great because his teacher was absolutely perfect. What we didn't appreciate was that she was the only good thing about the entire facility. We spent the next three years having him bounced through different classrooms and having to endure the derision of the school's administrator, who is a first class asshole.

We finally called in assessment teams from the state and from Trinitas, hired a lawyer and got him placed in another program where he's doing much better.

ASD requires constant evaluation, re-evaluation, agility and open-mindedness - but at the same time, you must absolutely strive to be acutely observational, as impartially as possible.

 

[Sir ScarletKnight]

There are lots of fantastic schools and programs in New Jersey.

I know people that have attended The Yale School and loved it.

http://www.yaleschool.com/

http://www.autismnj.org/document.doc?id=124


Challenger sports is a great program. http://freeholdareachallengersports.org/ The director is Alan Goldstein, who is fantastic, and happy to help. He formerly worked in the MERS school district, and is a great resource to talk to.

The college support program at Rutgers may be able to assist you as well. The director, Pam Lubbers, might possibly know of resources her students have used. She's really wonderful, I recommend reaching out to her.
http://rhscaps.rutgers.edu/services/autism-spectrum-college-support-program

I hope this helps!

 

[RU85inFla]

First of all i'm sorry to hear of your son's diagnosis. Since the diet thing has been mentioned, i point you the the attached book. I am personal friends with the author who is a pediatrician and dedicated her practice to treating autistic children after her daughter's diagnosis.

While I am a friend my opinion is only second hand. However, via conversations with many of her clients, her practices have led to general improvement in their children's lives. Looking at the reviews on barns and noble and other sites they seem overwhelmingly positive and useful for a parent right after diagnosis.

Good luck.

Good Read

 

[LocalDC]

one other thought-there is something called primitive reflexes-you can find excellent descriptions on you tube
you may not be able to diagnosis those that are needed, but doing them all won't be harmful and if some of those need remediation, the sooner the better--they are easy to do and can bring a big return

 

[LadyRU09]

Do you know the degree of autism he has? Is he high or low functioning? (You say he has some delays, but he's still very young.)

I was diagnosed with Aspergers in 6th grade (high-functioning). I learned how to walk and talk at normal ages, but I'm pretty socially awkward and have very few close friends (I'm glad some people took a chance and accepted me into their inner circles, though, but it took me about 25 years and a lot of random luck). I consider myself a geek and am very introverted. I've also never been in a romantic relationship, and I'm 27 (BRB, adoring my dog...). I connect with other animals better than the vast majority of people.

Notice his stimming (repetitive movements to stimulate his brain and calm him down), his intense interests that he will develop, preferences to be alone, and minimal eye contact. He will have trouble making friends and getting relationships. You will need to understand that, and work with his teachers or other mentor figures to guide him through that. (It does get a little better when you grow up, adults are more accepting than kids in school.)

Again, I'm speaking as a very high-functioning person on the spectrum.




Also, Autism Speaks is a HORRIBLE organization. They spend very little of their funds to actually help autistics and their families, support a school that uses electric shock devices on many students (Judge Rotenberg Center), and want to cure autism most of all. (Most of us consider our disorders to be part of who we are.) They also don't have anybody on the spectrum in major administrative roles (imagine a feminist organization with only men in charge).

I went to school with Ari Ne'eman, the founder of the Autistic Self-Advocacy Network, who was appointed by Obama to the President's Council on Disabilities. They're run by mostly people on the spectrum.

ASAN

 

[vkj91]

Originally posted by RU4Real:

Originally posted by RuLaw2004:
My 3 year old was just diagnosed with autism spectrum disorder.

He was born at 24 weeks (very premature) and has a number of developmental delays associated with that (feeding issues, speech delays), but it seems that he meets sufficient criteria for the spectrum disorder diagnosis.

I just wanted to see if anyone has kids or family members with autism spectrum disorder, or any insights to share.

Thanks.

My autistic son is now 20. I'd be more than happy to talk to you.

Having heard horror stories about how hard it is to get proper help and guidance today, I can only imagine how difficult it was 15-20 years ago.

 

[RuLaw2004]

Thank you all for your insights and feedback thus far. I definitely need to educate myself and process all of this.

In response to LadyRU09, his doctor considers him high functioning. He is delayed in his communication skills and requires prompting to express himself verbally, but he has a good vocabulary. He actually surprises us with some of the things he says - he knows a lot more than he lets on. He is very quiet around those he doesn't know and generally doesn't seek to interact with others (he is perfectly content playing by himself), other than a select few people that he knows very well. He scripts and rocks to stimulate/sooth himself. He gets scared in very loud/crowded venues (such as wedding receptions), but seems to do fine in parks, museums, etc.

He is still very young obviously, so we need to see how this ultimately plays out, but the doctor said that 20 years ago he would have simply been considered "quirky". He's a smart, energetic and happy little boy who is perfect to us.

 

[LadyRU09]

RuLaw, let him find a quiet place to calm down if he gets upset or angry (and ask his school staffers to also let him do that there). It worked for me in school, I was allowed to excuse myself and go outside in the hallway whenever I got really emotional. As for counseling, I found it useful when I needed to vent something or ask very specific questions, but learned a lot from practical experience in the real world. I had one counselor who pushed me WAY out of my comfort zone by making me call up people (this was before texting became very easy), and I thought I was a creeper to them because I didn't get very close as a friend to all of them.

I also like listening to music on my iPod and other electronic devices, that's pretty much my security blanket when I don't want to deal with the outside world.


And I don't know if the gluten free diet works for autism. I don't have any special diet, and read that the only people who REALLY need to eat gluten free are Celiacs and those with allergies.

 

[Extra Point]

LadyRU I think I have the same thing that you have (although it might not be all that abnormal) based on your description. I was never diagnosed with anything. You don't need someone to feel good about yourself and you don't need to feel sad because you don't currently have a significant other. Some lucky guy will eventually find you and realize that you're wonderful.

PS- board guys this is not me hitting on LadyRU so don't even go there.

 

[krup]

Originally posted by RuLaw2004:
Thank you all for your insights and feedback thus far. I definitely need to educate myself and process all of this.

In response to LadyRU09, his doctor considers him high functioning. He is delayed in his communication skills and requires prompting to express himself verbally, but he has a good vocabulary. He actually surprises us with some of the things he says - he knows a lot more than he lets on. He is very quiet around those he doesn't know and generally doesn't seek to interact with others (he is perfectly content playing by himself), other than a select few people that he knows very well. He scripts and rocks to stimulate/sooth himself. He gets scared in very loud/crowded venues (such as wedding receptions), but seems to do fine in parks, museums, etc.

He is still very young obviously, so we need to see how this ultimately plays out, but the doctor said that 20 years ago he would have simply been considered "quirky". He's a smart, energetic and happy little boy who is perfect to us.

You are way ahead of the game by already having realized what I bolded. You will run into people that will be an obstacle because they don't understand that just because a kid on the spectrum has trouble getting information out doesn't mean he isn't taking information in (and understanding it).

Don't ever let small minded people treat him as if his communication issues are cognitive issues.

 

[Extra Point]

Originally posted by RuLaw2004:
Thank you all for your insights and feedback thus far. I definitely need to educate myself and process all of this.

In response to LadyRU09, his doctor considers him high functioning. He is delayed in his communication skills and requires prompting to express himself verbally, but he has a good vocabulary. He actually surprises us with some of the things he says - he knows a lot more than he lets on. He is very quiet around those he doesn't know and generally doesn't seek to interact with others (he is perfectly content playing by himself), other than a select few people that he knows very well. He scripts and rocks to stimulate/sooth himself. He gets scared in very loud/crowded venues (such as wedding receptions), but seems to do fine in parks, museums, etc.

He is still very young obviously, so we need to see how this ultimately plays out, but the doctor said that 20 years ago he would have simply been considered "quirky". He's a smart, energetic and happy little boy who is perfect to us.

I don't think there is anything wrong with him, lol.

 

[LocalDC]

celiac is the term for people with gluten reactions that effect the villi of the small intestines..there is no specific name for when gluten triggers an auto immune reaction to other parts of the body,like the brain
to know, the best way is to use a lab that specializes in this testing, which neither lab corp nor quest do
a negative test from them is not conclusive

 

[SleepingGiantIsAwake]

Law:

My wife is an OT, who started out many years ago at Douglass, worked at Children's in Mountainside for many years, evals for schools districts, IEPS, etc. Aside from the professional background, she has natural God given talent with children, behaviors etc. if you ever have some questions, let me know.

BTW, I had your Tile guy come out for estimates, really liked him, but still deciding.

 

[rutino]

My nephew has Aspergers. His parents really focused on developing his strengths as a child. He was very much into blue prints, dismantling and reassembling just about anything, so they encouraged that and steered him toward computers and programing. He built his own computers and wrote software before he went to high school. He will be graduating from Stevens with a Computer Science degree this May.

I cannot begin to tell you how he far he has progressed. He probably always will have some social deficits, but he has become a terrific and accomplished young man. Educate yourself and become an advocate for your child. As far as education, my brother and SIL chose a small Catholic K-8 because they felt he would handle a smaller school setting better, and then he attended the vo-tech academy nearby for high school education.

 

[kapyoche]

I would be very careful about this diagnosis, especially if your kid is a boy.

Boys tend to develop slowly as the range can be 18 months when it comes to development.

Don't read too much stuff on Internet, since it will drive you crazy.

Get your kid the best speech therapy treatment since it makes a huge difference. You really will not know for sure about the diagnosis till the kid is seven. My son was slow so I got him help and he was fine by seven.

Make sure you interview speech therapists and observer how well they work with kids and parents. It helps if the speech therapists are young since they tend to be highly motivated and enthusiastic.

I would avoid older ones since my experience with them is that they act like they know everything and tend to be negative. You don't need to deal with that.

Good Luck!

 

[RUScrew85]

Originally posted by Extra Point:
LadyRU I think I have the same thing that you have (although it might not be all that abnormal) based on your description. I was never diagnosed with anything. You don't need someone to feel good about yourself and you don't need to feel sad because you don't currently have a significant other. Some lucky guy will eventually find you and realize that you're wonderful.

PS- board guys this is not me hitting on LadyRU so don't even go there.

 

[jreinsdorf]

I am a school nurse for children with special needs and autism is so common that three years ago we opened up a building specifically for our autistic children. One out of every 65 births will fall on the spectrum. Think about that. Many things like chromosome deletions etc can be one in 10 thousand but autism is an issue all its own because of its frequency.

 

[JERZEE73]

This is 1 of the best threads I've ever read on this board. It's tremendous that posters here are comfortable enough to ask others for help & receive more than they even ask for. Kudos to all those offering their help.
I asked people a couple days ago for information regarding a future vacation & knew I'd get some valuable feedback. Obviously my request is insignificant in comparison to the OP's request for info regarding his son's diagnosis, but it's nice to know that posters on this board are there to help each other.
I understand that some people don't like OT threads (& granted some are crazy), but so often they are extremely helpful to the board's posters.

 

[RUalumnus]

Originally posted by RutgersUnion:
There is a great program on Douglass if you live in the area. One of the top in the state.
Posted from Rivals Mobile

Actually, this is one of the top places in the country, and arguably the world. Sandra L. Harris, PhD, world-reknown in the field, is the Executive Director:

Sandra L. Harris, Ph.D., Executive Director[/B]. Dr. Harris founded the DDDC in 1972 and has worked with people on the autism spectrum for nearly 40 years. She is a Board of Governors Distinguished Service Professor of Clinical Psychology (Emerita) at the Graduate School of Applied and Professional Psychology and the Department of Psychology at Rutgers, The State University of New Jersey. She is the author of several books, numerous book chapters and journal articles concerning the needs of people with autism and the special needs of families that include a child with an ASD. She is an associate editor for theJournal of Autism and Developmental Disorders[/I] and the Autism Series editor for Woodbine House. Her honors from Rutgers University include the 2006, Daniel Gorenstein Memorial Award and the 2005 President's Award for Research in Service to New Jersey.

The DDDC serves the needs of people with autism spectrum disorders, their families and their schools. As an ABA program, we use these principles to organize our delivery of services. We recognize our responsibility to work collaboratively with the families of the children and adults we serve, and with the agencies that fund their treatment. As a university-based program, our commitment includes the education of undergraduate and graduate students and the dissemination of knowledge through research, training, and consultative services. We also provide information about the treatment and education of people with autism spectrum disorders to the professional community and the general public.


Douglass Developmental Disabilities Center
Rutgers, The State University of New Jersey
151 Ryders Lane
New Brunswick, New Jersey 08901-8557
Voice: 848-932-4500
Fax: 732-932-4509
Executive Director: Sandra Harris, Ph.D.
Director: Lara Delmolino, Ph.D., BCBA
Director of Educational Services: Maria Arnold, M.Ed., BCBA

 

[NJgold]

OP-

Son with Aspergers. Born at 34 weeks.

I recommend Jed Baker's Social Skills project on Easton Avenue and Children's Specialized Hospital if you go the medication route.

Find a good counselor because your marriage will come under tremendous stress...especially on issue of medication. My guy took himself off the meds.

Don't let him ride a regular school bus ... he will be bullied and stressed and in no shape once he gets to school.

My guy's best friends during his younger days were Internet friends ... lots of prayers and fingers crossed on that.

Don't give him regular syrup for his pancakes...off he would go!

A big issue for us was trying to decide whether his behavior at any given time was voluntary or involuntary.

There are going to be times when you're going to have to physically restrain the child until you see his eyes change, and he's calmed down.

He will probably speak without thinking ... and want to have the last word ... let a lot of it slide.

Sensitive to sound ... only wore certain clothing.

Our public school had teachers and administrators that got it, and those that didn't...but it had a lot of support in place.

We survived, and I don't know how. It is not easy, especially on the siblings.

Yet, my guy is at RU now ... doing fine ... still relies a lot on his parents.

Bottom line ... never forget during the trying times that your son has been entrusted to you by your Maker ... do the best you can ... you won't be perfect.

 

[80RU]

Not so sure if Dr. Harris is really involved in the day to day so much any more at Douglass. Also not so sure the place is really the same since Dr. Handleman passed away. Another thing about Douglass is that we did not have the option to pay tuition to send our daughter there, you have to have an out of district referral and that is not easy to get from most districts. Our daughter wound up at Princeton Child Development Institute, and we are very thankful for that. I would look closely at that if it is at all practical and you feel the ABA approach is best for your child. It is difficult to get in and people come from all around the country so their kids can go there, but I would jump at it if given a shot.

 

[Armor and Sword]

My son was diagnosed Asperger's/Autism 10 years ago when he was three. He's high functioning, does very well in school, but social skill building is a real challenge. He has no friends, doesn't really like to socialize and he does stim, which has started out as hand movements when he was young and has transitioned to noise making. Amazingly he is about to complete 7th grade with no known incidents of being bullied or harassed (but that could also be because he is oblivious to the social interactions around him).

I'll give you a rundown of some overall things to lookout for and at this stage from three years old until Kindergarten:

In an nutshell, get your son as much help as you can find and afford, especially at this age. It is not uncommon for some parents of ASD kids to go beyond what they can afford for some treatments, but we didn't have to go that route. Especially get as much state and county paid-for help as you can get. If NJ offers Child Health Insurance for those with special needs, enroll. My son has all his medical expenses paid for by the Commonwealth (PA). Its CHIP or Medcaid actually. Even though that is medical exams and such, he is going to need more evaluations than the "neurotypical" child with no issues.

We are fortunate to live in a part of the USA where state and local resources for serving ASD kids are available. In PA where I live, the county services have been excellent. I don't know where we would be without the services of the Intermediate Unit (the county level services in PA) That is what was available to us from 3 yo to Kindergarten.

I was really shocked about how zealous and enthusiastic some professionals we dealt with were about getting my son on meds even in the pre school years! I'm not talking about "well maybe we can consider Focalin for the ADHD issue six months from now" I mean people urging us to use meds as a "babysitter" to calm my son down and give us a break (or to selfishly give the aide a break), or to help implement a therapy. "Are you really sure that the ADHD med won't fry my four yo's brain in the process?" "Will that off-label use of Risperdal you suggest give my son D cup man boobs (among other perils) when he gets older? " Regardless of where you stand on medicating your kid, you may very well come across some people who will deal with your son who regard meds as the greatest thing since sliced bread and may condescendingly dismiss your reasonable concerns that medicating your kid with a growing and developing brain will result in unintended consequences worse than the ASD.

Join ASD bulletin/message boards, get as much info as you can gather. They will know all places and program you can try. They can be good support system too.

You should network with ASD parents in your area, preferably with kids the same age as your son. They will know firsthand what you are going through. Your newfound ASD parent friends will most likely use the same resources and deal with same people and will be a great "comparing notes" resource when dealing with agencies providers and the school district when he hits Kindergarten.

For managing your son's therapies, get the most experienced people possible to help your son. Some of the case managers we've had over the years were twentysomethings only a few years out of school who won't rock the boat of their employers at the expense of your son's needs. Don't let them do that. We have found that the more experienced (and usually middle-aged) non-medical case managers are better advocates for the child. In some cases, the older case managers and therapy providers have ASD kids of their own.

Most of the activities we got my son involved with were able to accommodate him and give him the space to do the things he needed to do according to his abilities. One instance where we told "sorry, we can't deal with him" was in the pre-K religious school settings. Where I live, which is half-suburban half-rural churches are the big provider of pre-k education and they are usually not able or willing to provide the support an ASD child needs.

If you are passionate, aggressive and resourceful about getting your son what he needs, you wife will be ten times that. Don't stand in her way because you, her and your son will benefit greatly. In most of the ASD families I know of, the wife becomes a stay at home mom (if she is not already) and will play a big role in managing your sons care. For her it becomes a full-time job at that age.

As some have suggested, ASD ends up being very individualized and the needs and concerns are going to differ from child to child. One child might acquire an obsession with learning about the House of Plantagenet, another might obsess over Pokemon. One break away from mom/dad and run into a busy street, another may wander off and get lost quickly. One kid may be quiet, another may have violent outbursts. My son went through a series of obsessions.

Good luck!

This post was edited on 4/17 12:39 AM by Armor and Sword

This post was edited on 4/17 12:46 AM by Armor and Sword

 

[Scarletwoman]

Can I ask a question of why is this happening now, or has this been prevalent all along and we never knew about it? I am very interested in this issue.

 

[yellowlot]

First, this is the most impressive thread I have read anywhere. The detailed information shared here, makes feel wonderful. It shows the true side of people, and most truly want to help. In a strange way, it also makes me feel great to be a Rutgers fan.

My son is 14 and has been diagnosed with Asperger's. I am not sure of the levels but it was a milder form. He is high functioning. Big issue for him is making friends. He gets nervous and shakes his leg sometimes. He has trouble empathizing with people, but it some situations is starting to get a learned response. He is very close to his mom. He also loves comedy, the visual stuff, like pie in the face type of stuff, and also the Ralph Kramden type outbursts. He has two older brothers away at college (Sorry guys, UNC and FL gators), he loves talking with them on phone or Facetime. He loves when they are home.

Does very well in school, big source of pride for him. But he does work hard at it and my wife spends a lot of time with him studying. He is kind of an old soul, loves talking with his grandparents, and is usually good conversationally with adults. He can miss social ques (sp?) and can sometimes he can bring up things from thin air. Again biggest trouble is being with kids his own age.

I don't have any advice on treatment, but I would say don't sell your child short, just when we think our son can't do something, he closes the gap and gets there.

My best to all of you.

 

[iReC89]

Its sounds like you are on top of this. Getting a diagnosis, an IEP and a placement at 3 is no small thing, and is the first and biggest step. Finding parents to talk to on a similar path will serve you well, both for yourself and your family. Understanding the wants and needs of a child with communication issues requires keen observation, patience, and some creativity. High functioning people with communication issues have found comfort in assistive communication (AAC) devices. These were $5000+ devices not too long ago, but now apps like Proloquo2go get the job done on a much cooler device like an iPad. I'm all for easing the frustration. I don't think 3 is too young to begin trying things like this - and just because it doesn't work now doesn't mean it won't at some point down the road at your child's choosing, and historically this app has updated for free since day 1. We bought an ipod touch with a speaker case years ago. The effort was at its time a flop for its its intended purpose, but the device itself was about the only "toy" my son was interested in. It helped him chill and have fun, and it allowed us to do some things as a family that didn't work before. Would media elimination have been better? I honestly don't know, but I tend not to buy into it. Accepting autism as a difference is helpful in getting to know this little mystery person. Having 2 kids, I'm not sure that my older kids better communication skills has helped us be more perfect parents there. The challenge is just more obvious when communication is an issue. The focus should be on improving communication, not just communication as speech. Your child with a strong vocabulary might thrive typing at an early age. Your kids interests might not match other kids - try things. If they don't work move on.

If you can - observe some of the ABA session, both for the ABA skills, and for seeing how the seasoned pros work through frustration and behavior issues. Personally I think a lot of the behavior issues arise out of frustration over unmet needs. Learning to listen and handle it can go a long way to keeping household peace. Keep listening for verbal and non verbal communication, and zoom in on changes. The funny way of climbing the stairs that turned out to be lyme disease. A tiny rash that was a food allergy. A cry that meant I'm just really not interested in this stuff now, but I still just like spending time together on an adventure. I think raising any child is very hard. Sounds like you are doing a lot of things right for your son. Good job, and parents of all kids need some good luck working through whatever challenge a kid has in reaching their potential.

 

[RU4Real]

Originally posted by iReC89:

...High functioning people with communication issues have found comfort in assistive communication (AAC) devices. These were $5000+ devices not too long ago, but now apps like Proloquo2go get the job done on a much cooler device like an iPad.

The iPad has been a godsend. My son, who is non-verbal, uses a combination of Proloquo2go and sign language to communicate and the former has really helped.

 

[198hamilton]

A lot of great suggestions. I'd like to add some less technical suggestions based on my experience with my 8 year old son who was diagnosed at age 2. It will be a daily grind for a long time. Stay positive, level headed and keep your sense of humor. Make sure you and your wife are on board with all the decisions to be made. You must remain partners and work in concert.
Certainly avail yourself of services and experts but don't just put it in their hands or overly rely on them. I know people who are constantly driving their kid from one service/therapy to another. The kid spends more time in the car and less time face to face with the parents/siblings on the floor. Become your own expert. You sound intelligent. Read EVERYTHING on the internet but take it all with a grain of salt. After awhile you will see where their is consensus and you will be able to distinguish between junk science and real science. Don't buy into the "snake oil" miracle cure. Right now autism can't be cured but it can be defeated. Every day I wake up and say what can I do today to defeat his autism.
Some practical suggestions for the right now would be to make sure your child doesn't get stuck on eating just a few foods. We have had to battle this on a daily basis and wish we were better about it when he was younger. Introduce as many types of food, flavor texture etc. as possible. I can't stress this enough. Make your own decision on the gluten issue but I would suggest a moderated approach. I'm a believer in high doses of the vitamin B complexes along with the nutrients to help digest them. There is plenty of research on the malabsorption of B vits. in autistic kids. Look into Kirkman's (not Kirkland) Super nu Thera. We put the liquid right into a juice box.
Lastly, socialization, socialization, socialization. Did I mention socialization? Single biggest hurdle for high functioning spectrum kids. Not only now but later in life. Academics? Don't worry, your kid will have the best grades in his class but difficulty playing with kids at school. I could care less if my son is as dumb as a rock(although he is a straight A student). I'm more concerned that when he is older he can have real friends, bonds, relationships and be socially appropriate. Start now. Get as many playdates, activities with peers, clubs, sports as possible. You will have to be proactive in helping him make friends. You can start at the playground today!

 

[krup]

Originally posted by Scarletwoman:
Can I ask a question of why is this happening now, or has this been prevalent all along and we never knew about it? I am very interested in this issue.

It seems like the answer is both.

-Autism as a condition was identified quite a while ago, but such children were classified as childhood schizophrenic or MR. I remember growing up in Woodbridge we would see buses of kids going to the special school in Avenel. At the time, we though there were two types of kids with MR, those you could tell by looking at them and those you couldn't. In hindsight, I would expect that a lot of the kids who didn't exhibit the physical characteristics of a chromosome issue were actually autistic. It was after Autism became a separate statistical classification the school systems could use that cases skyrocketed.

-On the other hand, some things that correlate with autism (like age of one or both of the parents) are increasing, the number of cases IS increasing.

 

[mikeinsec127]

My daughter is on the spectrum as well. Like dealing with cancer, the number does matter. She was low and didn't qualify for early intervention. My wife and I spent many hours coaching her on interpersonal and life skills even before getting the diagnosis. The work paid off as she was mainstreamed in school with a 504/IEP. Today she is in high school taking college prep courses, holding down a 3.8gpa. She has friends, volunteers to mentor special needs kids and works part-time. People who don't know about her diagnosis, don't even realize her condition.

The best advise is to be your child's advocate. If you do not push the issue with every professional you meet, they won't either. Also, join a support group - even if it is only on line - getting insight from other parents is invaluable.

 

[HoosierKnight]

So much great advice on here and different experiences.

We have a son with Aspergers who is 22 and was diagnosed on the spectrum at an early age pre-K.

As has been said each kid is different. There tends to be similarities but some symptoms present in some with not at all in others.

Our son exhibited echolalia early on (repeating lines or phrases he heard or read). We read to him every day and early on I would turn the page and he would say the words on the page himself. He wasn't reading, he had just memorized the book. He still has a somewhat hard time coming up with original thought. When he was younger, he would repeat lines from some tv show that he thought fit the situation he was in. (This works well with people who like to quote Monty Python for instance.)

In some ways he is beyond his years. In other ways, he is still a 12 year old. His development has been uneven and delayed.

We had another son 2 years younger who is typically developing. His younger brother would demand that he play with him which was a Godsend. That often broke him out of his reverie in stimming over trains or vacuum cleaners.

Our son had a great sense of humor as I would try very hard to make him laugh from an early age. Many ASD kids are fact based and have a hard time getting humor. They also have a hard time reading social cues such as when someone is bored as they recite every alien world and creature and back story in the Star Wars Expanded Universe and whether they are canon or non-cannon.

He has been driving for several years with only one accident with no injuries. He works a couple days at Staples and is taking two classes at County College of Morris. Intelligence is not often the issue but rather motivation. He is taking U.S. Government and so far has gotten a 102 and a 100 on his two tests. For Human Biology, he got a 58 and a 50 something. He doesn't study either subject like a typically developing student would. He studies Government not at all. He just goes to class. For Biology, he just goes to class and goes over each power point a few minutes.

We found that a combination of Abilify and Zoloft is best for him. Not high doses. He takes 10mg of Abilify and 100mg of Zoloft each day. It was a painful process to find which medications worked for him. Sadly, it is basically trial and error. There may be side effects and you have to ramp up each medication and then taper them off them to make a change.

Risperdal caused our son to have a voracious appetite and he gained weight that he has never fully lost. (many ASD kids are such picky eaters that they could use a little weight gain.) Depakote (a mood stabilizer) did nothing for him.

Very often ASD is comorbid in that it appears along with other disabilities such as OCD (obsessive compulsive disorder). For several years my son plucked his eyelashes out. As it turns out, it looks pretty weird but you can live without eyelashes. He has had various ticks like clearing his throat and tapping his feet when he walks and others not so nice like smelling his fingers.

For the most part, he cares not what other people think about the way he looks or acts. In a way that is great but it isn't good for socializing.

We made the difficult decision to put our son on meds when he got violent. Most ASD kids do not get violent but they at least will have melt downs when they are frustrated which is often. Stanley Turicki wrote a great book called The Explosive Child. Basically, he said that when a special ed kid is having a melt down, their brains have melted down and they can't think clearly. Thus, it is useless to try to reason with them since at that point, they cannot reason. The goal then is just to diffuse the situation or use distraction. Distraction worked for my son well beyond what works for typical kids.

I did not want our son to walk around as though in a daze from medication but that has not been the case. And even that is better than walking around like a ticking time bomb ready to go off. One other thing to consider is that the early years are incredibly important for learning. If your child cannot sit still or behave enough to be taught, the brain is developing in those years and the opportunity for learning could pass them by. Our son takes his meds without question. But many kids who grow up eventually refuse to take them. Let that be after they get an education and their brains have fully developed. Of course, meds aren't for every kid but for some, it can be the difference between getting an education and being able to sit still and concentrate enough to learn or not being able to function in a regular or special ed classroom.

If you decide to use meds there are few psychopharmacologists in NJ let alone the U.S. That is what you need when you start mixing meds. It is a bit like seeing Theodoric of York, a barbarian doctor since it comes down to educated guesswork but you can also see a general psychologist for treatment. It you decide to go that route, getting a book on drugs for kids would be best. Just so you know what the benefits and risks are with the various classes of medications such as anti-psychotic, mood stabilizers, etc.

If you have several children, you have to let them know that you are not following the principal of "even Steven" in the family. With a special ed kid, you are going to give each child what they need when they need it. Often the special ed kid will have greater needs and it may seem unfair that you are spending more effort helping one than the other.

My son threatened to blow up the school in 3rd grade. that had the district ready to pay for his schooling at Calais in Parsippany in a hurry! Of course, he was in 3rd grade and he wasn't blowing anything up. In any case, by the time he was a freshman, all the public schools had greatly increased the number of teachers with special ed certificates. We brought him back to West Morris Mendham to repeat his freshman year and he loved going there and graduated four years later.

He goes to an Aspergers friends group in Chester. The range of outcomes for these ASD kids as adults varies so much. Some drive, some don't. Some are social, others mostly silent or speak robotically. When my son is not going to school or working, he is in our basement playing Xbox or computer games or surfing the internet to watch bad/comedic movie reviews or go over TV Tropes.

Anyway, I appreciate this thread and it is a testament to the love everyone that has contributed has for their children as to all the effort that is put in to raise a child with ASD and other disabilities. We each do the best we can and make the best decisions for them that we can. God bless all your efforts and decisions and your ASD kids.

 

[NJgold]

Don't forget the grandparents. You don't need "buy in" from them, but if they can develop a special relationship with your son, it will make all the difference in the world in getting him through to adulthood.

 

[jreinsdorf]

Originally posted by Scarletwoman:
Can I ask a question of why is this happening now, or has this been prevalent all along and we never knew about it? I am very interested in this issue.

Trust me, this is the million dollar question. Knowing the cause is the best way to finding the "cure" or at the very least, effective treatment. I will say this. The best movie I have ever seen on ASD is called Temple Grandin by Claire Danes. Amazing and informative movie and given the prevalence of the diagnosis (1 in 65) it should be mandatory viewing for all people imho. The other thing I will add for anyone who is intimately touched by this and has other "normally" developing children is allowing those kids to see that while their brother or sister may be different than most they are under no circumstance the only ones out there. As a school nurse for special needs children and also a Special Olympics coach I REQUIRE my normally developing son and daughter to come with me to S.O. practice so they may see for themselves that God makes us all differently and that physical ability and cognition are present but may require using a different lense by which to see it. So even if your normally developing child has an intimate view of special needs at home it may be helpful for them to volunteer some time helping others.