By Marian Wilde, GreatSchools Staff
The importance of early intervention
Romaniec urges parents to act immediately if they suspect that their child might be autistic. "My son was diagnosed at 18 months. We had early intervention services at my house within three weeks. The earlier the diagnosis the better. He was head-banging, biting, pinching and screaming. He has none of that now. He's 6 and in first grade. The only thing he has is a little bit of auditory processing delay and that's normal even with typical children."
"There are a number of parents who don't know that special education for all children starts at 3," says Ficcaglia. "The services themselves vary quite a bit. Probably the most common service provided to younger children, children under 5, is Applied Behavior Analysis (ABA). It's a highly individualized one-on-one intervention based on the principals of behavior modification. It's probably the number one set of services available to young children. Then there's a whole set of more play-based interventions and those would include things like Floor Time and now a newer one called Relationship Development Intervention, RDI."
Ficcaglia's program, Jump Start, operates a little differently that most. "We don't believe that one method works for all kids, so we use a very eclectic approach. We use ABA and we use child-centered play-based approaches. We also use speech therapy, which is another common intervention. So we use a more eclectic model, which is available in some places, but generally speaking most interventions are a little bit more unilateral than that, for lack of a better word. They use one method and only one method with the kids."
Individualized Education Plans (IEPs) in preschool
Be an advocate for your child's education well before kindergarten, counsels Romaniec, and don't automatically accept the district's first IEP offer. "In my son's former school district, they had a Head Start Program, which was 24 kids in a classroom, completely inappropriate for an autistic child, and a Special Day Class which was for children who have more severe symptoms of autism. They offered that to my son, but I said he doesn't belong in either of those places. He needs a small classroom environment where he can emulate normal children. And they weren't able to provide that. So I had to go to a private preschool and have them pay for it and provide a shadow aide. I was advocating for him to learn normal behavior. I didn't necessarily want him to emulate the autistic child."
Necessary school programs
"There are a variety of behavior therapies that are considered to be accepted and necessary for austic children," continues Romaniec. "It's more than social skills. It's to learn general concepts. My son had to learn the difference between up and down. Forward and backward. Autistic children don't have the same level of cognition of differences of that nature. He had to be taught social cues. He had to be taught normal behavior like sitting in a chair properly. He had to be taught the objects in the house. 'This is a towel. This is a toilet.'"
"Another set of services widely used for older kids is TEACCH," says Ficcaglia. "Those are group-based and they're designed for the classroom. It's a highly visual curriculum that really emphasizes individual work within a group, with a high level of structure in the classroom. The idea behind the visual classroom is that it eliminates the need for as much language for the instruction. So everything is very clearly laid out for children."
Treatments beyond the classroom
Autism is a complex disorder and no one treatment will work for all autistic individuals. Many parents have found that approaching the problem from all angles works best for them. "My like-minded friends and I call it a three-legged stool approach," says Romaniec, "where you need to have dietary intervention, biomedical intervention and behavior intervention. All three. My son's recovery, I attribute it to all three. I cannot pick one over the other. All three were essential."
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Comments from GreatSchools.org readers
04/29/2009:
" My wife and I have a child diagnosed with autism and it seems that
funding and programs are sometimes scarse . and we do noy know a soul with
an autistic child .we would love to meet people in the same boat sort of
speak. the resources here in florida are basicly first come first serve .
and we are trying to find information on programs constantly and it just
seem,s that its a never ending battle unless you have millions to afford
all the therapy,s and so on.so any info would be great and greatly
appreciated.thank you Troy&jennifer."
09/17/2008:
"You may want to add www.floridaautismcenter.net to your resource list. The website is being revised to include a parent question section and extended information on Applied Behavior Analysis."
07/14/2008:
"My new next door neighbor has a 3-year-old autistic son and I want to learn how to interact with him. We live in an apartment complex and he pounds on my door a lot, and on my bedroom wall. I want to handle this situation in a productive win/win manner. He's a sweet little boy and I know that, armed with information, I can not only tolerate the behavior, but enjoy interaction.
Thanks"
03/17/2008:
"As a parent who has been doing private research in the field of vaccines for the past 20 years, I have seen the deliberate attempts by drug cos. via our 'health' dept regulatory agencies to negate and/or squelch info relating to autism and other developmental disorders caused by vaccines. The current hype of 'thimerosol-free' vaccines, which is a misnomer, in that the FDA can define a vaccine as mercury or thimerosol free if it falls below the defined threshold of acceptability of micrograms of ethyl mercury per kilo of body weight which is 0.10 mcgs. of ethyl mercury per kilo of daily exposure. There is no such thing as a truly mercury free vaccine. Independent lab tests of 4 different lots of vaccines labeled 'thimerosol-free' have shown miniscule to large amounts of ethyl mercury still present. Ethyl mercury binds to the protein antigens within the vaccine serum and cannot be filtered out entirely. Thimerosol is used in the initial stages of vaccine production and is sti!
ll present in the final product. Children are very susceptible to the neuro-toxic effects of mercury and aluminum, in addition to ethylene glycol (anti-freeze), formaldehyde, msg, squalene, carbolic acid, phenols, streptomycin, aborted fetal tissue cells, dead animal pus, etc. The accumulative exposure is damaging their brains and the rate of autism is now 1 in 86 boys and 1 in 150 nationwide. Boys are 4x more likely to develop autism due to testosterone not being as protective as estrogen. Glutathione and vitamin C levels are also important protective agents, however, they cannot shield entirely the effects of these destructive ingredients. I'm always amazed that so many parents don't ask their doctors, who they mistakely consider the guardians of their child, what are the ingredients in the insert label. They look at food labels, but not the label of an inoculation that can cause damage. Within 12 hours of birth, babies are routinely given a hep B shot containing 12.5 mcg!
s. of ethyl mercury. 12.5 to 25 mcgs. of ethyl mercury is als!
o contai
ned in the flu and DT (diptheria-tetanus) shots. No wonder our children are damaged. And by the way, vaccines are NOT mandatory for school admittance. Filling out the immunization schedule is the only 'mandatory' requirement which has exemptions available on the back side for those who choose not to have their child inoculated."
01/28/2008:
"My name is Alice. My son, Karl, has been diagnosed with autism. He is now 17 years old. He wasn't diagnosed until later in life because he didn't fit the stereotype of an autistic child, he was too friendly, alert, and had good eye contact. The public school system diagnosed my son as SLD at age 3, TMH at age 5, and I finally learned that he is autistic recently. I agree with your article about how the public school system isn't quite up to educating our children, and for the most part are not able to diagnose our children! It has been my experience that the professionals at the school are only concerned with a standard test score which is not really an appropriate tool to declare one's intelligence. It is more important to address the child's need, provide the appropriate teaching methods and learning strategies, provide individuals with lack of communication skills a means in which they can express and exchange ideas/thoughts. Without any level of communication, it!
is impossible to come to a conclusion of a person's intelligence. I believe children with autism are misunderstood, underestimated, and tend to be neglected not by professionals who don't care, but by professionals who do not have the qualifications or experience to do so. Until
the Department of Education begins to understand their responsibility to our children, and create programs in which it is mandatory for teachers and therapists to attend we are never going to get a handle on this problem. We have to consider the growth rate of this disability, and understand that the autistic child is not always someone elses' problem, but it may be yours some day. If it ever does happen to you personally, will you be up to the never ending battles at the IEP meetings, the predictions of doom and gloom, the words can't and won't, or we don't have to? I personally don't understand why a system would challenge parents to such lengths in regards to helping the child in question. It seems that fighting only delays intervention. Isn't it the right of a child to receive an appropriate public education funded by the taxpayers for the benefit of the child. It seems to me parents have enough to fight without having to fight the professionals who are there and b!
eing paid to help them.
"
12/26/2007:
"Parents please be aware that TOXINS are linked to autism. I understand that education is extremely important to help austistic children. Parents....you can also take control within your homes. Consumable household products are a big problem. Chemicals are linked to the cause of autism. There are safer, better, shopping alternatives that will promote the health of autistic children. We are finding that the elimination of toxins in households are extremely beneficial to autistic children. If you are a parent, school or organization, who wants to know more about safer alternatives, please feel free to email me."
12/26/2007:
"I found this site really interesting as I have just been told by my son's school that he is mentally retarded.. altho a doctor has diagnosed him as autistic/mild-moderate and mild-moderate adhd."
12/17/2007:
"found this article very helpfull, one of my grandaughters has autism , we found out a couple of years ago , her parents are brilliant , they have tried all the above methods . and over the last year and a half , she has inproved greatly, i would appericate any help or comments you can give me and my wife to helps us help her . we would love to know the best things to say or do , or any suggestions so we can help her parents thank you michael"
11/8/2007:
"My son was diagnosed with PPD-NOS at the age of 3 which was really discovered due to severe speech delays. Luckily, his pre-school teacher informed me of the State of Maine's Child Development Service where he started a special preschool and received speech, OT and PT. The IEPs are hard work, but the parents must remain their child's best advocate. I have heard some people having better results by hiring lawyers to act as advocates, but I have not required this. In keeping close contact with his school and his abilities, we actually went to 3 preschools in 2 years.
It is very hard to say the state of Maine has a great autistic program as the state is a big place. Even within the area of Portland preschool's changed based on directors and teachers hired.
He finished Kindergarten in Westbrook in 2007 and although he had excellent services there it was still limited based on spending costs. This year, for 1st grade, we moved to Cape Elizabeth and I could not be happier. This is a city obviously dedicated to Special Needs children and they have a reputation of hiring the best.
They have already created an excellent IEP for my child, significantly above that which Westbrook could offer, and without the need for any parental pressure.
If anyone is looking in Southern Maine, you cannot go wrong with Cape Elizabeth."
10/19/2007:
"Dear Folks, I have a friend whose daughter is Autistic. I am simply researching any info I can gather for him and his daughter. Please send me any links or info you have on early symptoms and early ways to help small children with Autism. ThX!!!
Ben Aguilar"
10/9/2007:
"I have a son who has autism and I have been running a Son-Rise program with him for 1 year now. He has made great progress and I noticed you did not mention this program. Especially for parents who home school, the Son-Rise program would help them a great deal."
10/1/2007:
"My daughter is 8yrs old and she has autism. I think that a lot of parents don't know their options. When choosing a public school it also hurts because there are things that are not known because the school district does not want to provide it. parents learn your rights for the best of your children. I am now trying to find out what other options I may have because my daughter does attend a public school and by choosing another school for her I will have to pay out of pocket and I just can't afford that."
09/27/2007:
"To the people moving to the Seattle area: UW has a great autism program. Also, my PDD-NOS son had a really positive experience at Sorenson Early Childhood Education in the Northshore School District in his 3-5 years. We're trying to find him a good kindergarten fit right now in the private sector, but I've heard some special needs parents talk really good things about Kokanee Elementary's autism program, if you want to go public. Good luck!"
09/4/2007:
"Thank you!!! I am so glad thay I accidentally found your website. Having done some research, I found this website most informative about parental rights in the school system because evidently there are scool systems and school systems!"
08/19/2007:
"I,m looking for best program for m y autistic son
who is a high school now and is 16 year old .
I,m in Boca and looking for some answers . can anyone help sincerely ?
any private schoolfor autistic kids with best rep?"
08/6/2007:
"All websites should deal with the problems of relocating. I am looking to leave NY but have no idea where to move to. Someone should should post a column or a link that tells parents what are the best cities in the US to live in with children with autism. It should describe whats available and the ease/difficulty of finding such essentials as schools, day care, after school programs, medical facilities,doctors who specialize in treating people with autism and any other relevant information. It is very deplorable that not enough funds are being used to provide services that are badly needed. It's frustrating to find out that while I might have found an area with great schools, I then find out day care is virtually non existent in that area. "
07/27/2007:
"I am glad that I have run across a website where I can vent to parents, educators and loved ones of children that suffer with Autism. I am the mother of two boys that suffer from Asperger's Syndrome. I previously located to Houston, TX from Florida to be able to give them a better opportunity to be educated within a school system that offered autism programs. And I must say that I give Kodos to Texas! I really enjoyed that my children attended 5 star schools, but due to domestic violence we moved to Beaufort, SC where the school system is in the dumps and they do not offer any programs. I am in the process of trying to locate information on schools in Savannah and Charleston, so that I can make the best choice for my children. I am willing to relocate to the far ends of the earth if necessary. If anyone has insight on this issue, please contact me."
06/20/2007:
"Kudos to greatschools.org for posting an updated article with helpful info, suggestions and hope. My child was born with autism, diagnosed at 20 months, and just graduated from kindergarten at a private school (1st grade curriculum) where no one knows about her history of autism and I do not plan on telling them. When I first started to learn about autism, there was so much information, so I asked myself one question: 'will this help me treat my child?' If it was a debate about cause or an article about neurology, I hit 'delete'. I spent my time learning first only what was relevant to treatment. Early intervention is the best chance, the clock is ticking, and you don't have time to waste on anything you cannot apply to treatment. Almost all services we got for free were not helpful, but those we paid for were. It sounds awful to spend 5 figures, but it is less expensive than caring for a dependent child for a lifetime. Each child is an individual, so concentrate your limite!
d resources (time & money) on what your child's strongest symptoms are. For us it was auditory processing disorder and chronic diarrhea. For you it might be something else. For beginners, see article http://www.autism.org/wereaparent.html. Read the whole TACA website. Read the ARI websites https://www.autismwebsite.com/ari/support/ariwebsites.htm. You can do great to have many therapies simultaneously (medical, behavioral, speech, etc.) You can train yourself to help your child by reading the book More Than Words from www.hanen.org."
12/8/2006:
"I don't think the government does much to help autism children."
11/20/2006:
"I am terrifed about moving my son out of the system that he is in. It took me over a year to get services set up for my son. He was diagnosed shortly after turning 2.5 years old and was in special Ed school as soon as he was 3 and we are in Hawaii. The people are great but their services are hard to come by and lets not talk about IEPs, it is as thick as a brick because NOTHING is done if it is not in the IEP, and I am afraid that if I stay in Hawaii he will soon be in the normal elementary school system and Hawaii is ranked one of the lowest in test scores but it has taken me this long to get services and darn it, I want him to get them! What should I do?"
09/6/2006:
"The TEACCH program is helpful to some kids who are autistic but by no means essential to all of them. It is overapplied, overdone and misapplied when it is not necessary. It is a valid tool to use and really helpful to some children, especially during their early primary years. I just wish that the same attention would be given to other valid strategies that are helpful to the many high-functioning autistic children whose abilities do not require TEACCH. "
07/24/2006:
"My son is autiste 5yrs Robert Noah old i am so glad to find this article about every thing i knows and what i did not.
Some thing i always try to share and ready tells my son docteur most time the childreen with no verbal (speech delay) most of them is not autiste ;1. Is not exact 100% the screening it was succes most mistak coulb start there .2.It some thing maybe ignoring to some culturs to make sure is not 'under the tangue' a tissu need to be cut of like a litle surgery . Generaly by experience to the country where i am originaly from it work and last thing is you 3.Need to work hard to the environment specialy for the kinds of children use to talk before and one day no thing come out again ;this factors is very neglict to the big country some time ,the medecine go so far away to find the solution.To africa it check this early to the baby when it cry or when is had age approximative to talk .I wish wherever the science doing autiste is realy and i beleive the peoples work very hard to make this success.Juste never give up for us children.
BIG HUG to all children in the word like my Robert Noah
thanks "
02/22/2006:
"All of you ranting about mercury poisoning need to read ALL of the studies. There is definitive, double blind research -- much of it done in other countries, far away from the influence of the 'evil' corporations in the U.S -- that shows quite conclusively that there is NO correlation between autism and the mercury that was once used as a preservative in vaccines.
Parents who choose to not vaccinate their children are not only placing their own kids at a MUCH higher risk of some pretty scarey - life threatening diseases (MUCH higher risk than even the bogus risk of cases of autism per vaccinated child), but the presence of non-immunized children in the general population places EVERYONE at risk -- especially other children, even those who ARE immunized.
I have a son with autism, and I have the means to sue anyone. If there was ANY real scientific data that showed a correlation between vaccines and autism, I'd make it my life's work to get the drug companies to fork over millions. The fact is that the reaearch is conslusive that there is NO correlation.
It breaks my heart to see parents of autistic children -- especially those who are just finding out their kid has autism -- to waste energy and time on this nonsense -- time and energy that could be better spent on REAL education about the condition and investigating REAL answers for their kids' treatment."
02/8/2006:
">From New York, 2/8/06:
In response to the 'teacher from Oregon'. I'm so tired of this 'don't want to be bothered attitude' some of these teachers have. Teachers like this don't want to share running 'their' classrooms with a Special Ed. teacher and an aide or two. They (these teachers and some district officials) should realize this would address the issues that this very teacher complains about. Do 'these' teachers feel threatened when they have to deal with the Special Ed. teacher and tolerate the special ed. students that require the Special Ed. teacher? Each school district seems to have their own way to define 'inclusionary settings'. If the school officials and Board of education don't offer better solutions then we will always have this rift. It will always be Regular Ed. VS Special Ed. School budgets are subject to vote. When parents don't support and vote for budget increases, then again we are not solving these issues. Are we that far from solving the mystery of how to appropri!
ately educate students with disabilities? NO! Schools offer different services but not a full range of services. Each school district should have classes of self-contained, inclusion, intregated and mainstreamed options and all related services. The other problem is all disabilities are thrown together in some kind of melting pot. This does not appropriately address the different disorders effectively. Autism is different from Downs and so on. These children of varying disabilities cannot all be educated the same way or one way. Until this is recognized and acted on, we again remain at this level. It all takes money. The money is out there but it doesn't get here. There is always money for sports. If the budget increases don't include providing services for the special ed. students, then we lose again. This teacher adds further insult here by suggesting the regular ed. students and their rights are subject to what? Having to put up with the special ed.students? !
Or worse, why bother. Those with disabilities need advocates!
to figh
t for their rights. Are special ed. students without rights? Regular ed. students and special ed. students have the same rights? or no?.... This teacher worries that this country's education system cannot compete with other nations. If we all cannot help one another, tolerate and have some empathy, then how can we even begin to worry about measuring up to other nations. Ridiculous. Status seems to be more important. People with disabilities didn't ask for this nor were they born with disabilities by choice or for something they did wrong. What about the kids that do the bullying? Are they not tolerated? No they get away with it. How about the regular ed. students that are disrespectful and many of these students are disrupting the classrooms. What's the perspective on this????????? What's their excuse? This teacher disgusts me and for a whole hour has to put up with this autistic boy. Better count your blessings and be grateful. This teacher worries that the !
gifted children are losing out. The gifted children have programs to further their gifts and don't have to fight for their rights. This teacher comments about the 'poverty' labed population and their education. Sounds like sterotyping and some discrimination. Doesn't anyone realize the positive influence regular ed. students provide for the special ed. students in these inclusion classes. Obviously there are teachers and parents that do not instill and promote any of this in their 'regular ed. students'. How do you sleep at night!!!!!!!!!!!!!!Do you have any integrity?"
01/25/2006:
"I realize that many of the 'facts' that you are quoting here may appear to be accurate. However, they are slanted from the perspective of the Neurotypical community. There are many mentally retarded children with Autistic Behaviors and Traits and we on the spectrum consider tehm to be part of our community. However, I beg to differ that 80% of people with straight Autism with no other co-morbid conditions are mentally retarded. As the mother of 3 children on the spectrum, the wife of a wonderful man on the spectum and a diagnosed Aspie myself I see many Autistic people. The inability to communicate or the lack of desire to communicate in a 'normal' way does not make us meantally retarded. I am living proof of that. My IQ tests have proven me out to be eligible to be a member of the 'geekiest' group out there MENSA. However, my social phobias tend to keep me close to home and out of the limelight and very far away from groups. My oldest diagnosed child's IQ is three points b!
elow genius and he is a diagnosed Aspie. My non-verbal children are not delayed in any way that does not directly relate to their ability to understand our expectations of them. Maybe the real problem here is acceptance of Autistic people as a neurologically defined sub-culture rather that a group of people with a disorder that needs to be eradicated, educated away, ignored, or pitied."
01/10/2006:
"Why not tell the truth that it is the mercury in the MRM shot doctors give to very young children. My son was fine until that shot and he begain to digrace to being hving austim. If not, why would Majoruty leader in the senate try and pass a bill that would exempt drug companys from legal recourse. As for those studies, they were conducted by the drug companies for CDC. "
12/1/2005:
"My son is 2 1/2. He was diagnosed with autism 2 months ago.In hindsight alot makes since now, at birth he was hypotonic (no startle reflex) at 6 months they said his head was measuring large which started a chain of ct scans to make sure the fluid they found at the first scan wasn't increasing with no increase the scans stopped. We along with the doctors started documenting his developmental delays. He was then referred to early intervention. In Alabama at 30 months of age the county school board takes over from early intervention with his education plan. My husband and I are not comfortable with him being in a public school and are looking into a private school focused on his abilities within his disability. My stepson was born having siezures, at one he had brain surgery to disconnect the right side of his brain where the siezures could no longer disrupt. He has been able to do everything the doctors said he would not. He has alot of autistic characteristics but doctors sa!
y it's because some parts of his brain are not functioning properly from the disconnect. I have a 4 1/2 year old son that they diagnosted with ADHD. My concern is how much of these disabilities are hereditery? And with some of you that has researched Thermerasol (the mercury contained in immunizations) have you found connection with your childrens disabilities and immunizations? I ask this because I am terrified that my 7 month old twin girls are going to be affected by their immunizations. Could these things be hereditery that the mercury is triggering in each of them? How do I ask for the shots without the perservative Thermerasol? I am very new to all of this and concerned that if I don't stock pile all the info I can I might miss something that is crucial at the time I am so scared of missing something that can help."
11/2/2005:
"In response to the argument against the inclusion model: If self-contained classrooms had proven themselves to be effective, then they WOULD be the answer. Autistic children learn differently but they are able to learn. This has been proven time and time again. And we are at the point where we can either put them in situations where they will learn appropriate behaviors or continue to be reinforced for inappropriate ones. Granted that some children are quite severe and their inclusion should be looked at on a case by case basis, but how can anyone, particularly an educator, say that they don't deserve the same in regards to education as a typical child or even the money to help with that? Unfortunately parents with a child diagnosed with autism are stuck between a rock and a hard place when it comes to seeing that their child receives all the services that they need. Unlike any other disorder or disability, insurance and government subsidies just won't cover it or do at a substandard, minimal level. The least we can hope for is that they receive some services provided by their school system. And to assume that other children are suffering because of autistic children is ignorant at least, ill-thought at best. With more children being born with varying disabilities, it disheartens me to hear that educators in America are not ready or willing to rise to the challenge. "
10/31/2005:
"I think it is important to keep a positive attitude and to BELIEVE that our children are capable and CAN do. It makes a huge difference when parents collaborate and are greatly involved in their children's eduation, and really become an active member of the IEP team. Even though a child may have a diability that is visible, it is important to remember that we all have a disability. We need to know or discover our children's strengths - to identify their abilities.
In regards to 'equity' for Kentucky, I believe that equity is not providing the same amount of materials or time to a child. Every child has the right to an '...equal access to the core curriculum.' That is, for instance, in a classroom of 25 students where 5 students are English language learners (ELLs), and the teacher is teaching them about the Native Indians, the teacher would not just provide every student the same materials (books, Internet access and use, etc.). The teacher would bring in realia, provide visuals, and pull them to a small group for direct instruction, etc. Learning is not a 'sink or swim.' Teaching is a profession that requires more than having a passionate heart and dedication to meet the needs of every individual student. No matter how diverse the classroom is, the teacher should still have and hold high expectations for themselves, their students, their parents, and they should continue to challenge every student. Classroom management is very crucial here. Students' needs can be met, but building Rome did not happen over night. As professionals, teachers are preparing every student to become life-long learners and so much more. Children are children...and which child haven't had inconsistent outbursts? I think that even as adults, we all have mood swings. If outburst is a concern that is distracting or interfering with instruction or the learning process for our children, then find a strategy for the child to work with...and just even though Plan A works for John, it may not work for Emily, because we are all different individuals with different needs, learning styles, etc."
10/31/2005:
"Well done! I'm a mom of two sons, one with ASD (6) who had mercury in his vaccines, and anther (3) who is fine and is way ahead, academically and socially (no mercury in vaccines). I'm glad you mentioned Generation Rescue. You could also mention David Kirby's Evidence of Harm (book) if you like, but it's good you mentioned Kennedy's findings. The NIH and trad. medicine is so corrupt on the matter--lots of money and reputations at stake. We are chelating our 6 year old, because his own metallothienien (ability to self-chelate) levels are low (proof that it's mercury poisoning). Thank you for putting this out there. "
