When “Special Needs” Services Really Don’t Apply To Your Special Needs Child

By Jennifer Flinton

My 10-year-old autistic son was dis-enrolled from the adaptive summer day camp at our local recreation center today.  This was a camp specifically designed for special needs children; there were actually several kids my son knew from school in the very same camp.  I’m starting to detect an emerging trend here.  “Special needs” doesn’t necessarily apply to my son, who is totally non-verbal and is on the more severe end of the autism spectrum.

This has happened before.  I enroll my son in what seems, on paper, to be an ideal program for him – small staff-to-child ratio, lots of activities to keep him occupied, and most importantly, staff trained to understand and work with special kiddos like mine.  Then, when my son and I go for our first day, we quickly realize that they really didn’t mean kids like him, with often severe outbursts of behavior, self-injurious behavior, and aggression.  They want compliant kids; those kids with special needs who might just be a little physically slower or cognitively slightly impaired.  Those are the kids who look good on the brochure, not my kid who’s red-faced and whose nose is running snot because he’s been screaming for the past hour.

The first experience like this was with a TOPS Soccer group in our hometown of Olympia, WA.  The “cute,” compliant special needs children loved the indoor gym and were eager to participate in the group warm-up activities.  My son covered his ears due to the echoes of the gym, and wanted nothing more than to leave – he kept crying and tugging at me to go.  We gave up after 4 or 5 practices.

The next experience was with a social skills group for ASD children.  The first year we were here in the Austin, TX area, my son did well with this group, so I was the first to sign him up the following year.  I found out a week before the group was scheduled to start (and once it was too late to find another summer activity for him because they were all long since full) that the agency had decided to have a higher functioning social skills group, where they could take community field trips and such, so my lower-functioning son could not participate.  Sorry.

A few weeks after that, my son’s speech therapist gave us an ultimatum…either my son’s aggressive outbursts had to drastically improve within two weeks, or he could no longer receive speech services from her.  Considering we’d been doing almost nothing but trying to stop his behavioral outbursts for years, this was not a likely possibility.  I was a bit surprised because the head of that speech clinic was a BCBA herself.  Surely, if anyone should be able to work with behaviorally involved ASD children, it was her and her staff.  So, we didn’t bother to wait the two weeks – we stopped going on the spot.

We decided to try Miracle League baseball – a baseball team specifically designed for special needs children.  They assigned a one-on-one volunteer to every child, which in theory sounded perfect for my son.  Well, it turned out that these volunteers were middle and high school students who really didn’t know how to handle more severe behaviors like my son has.  Also, it was disappointing to them not to get the emotional feedback from my son and other children like him – if they were going to volunteer, they wanted to feel like they were having a positive impact on the children.  Several families with more severely affected children were asked not to participate any longer.

Next, we tried Special Olympics.  I purposely waited until the spring to try track and field, thinking that my son would be most likely to succeed with something like running that didn’t involve team participation nor a lot of rules.  Unfortunately, Special Olympics also only gets a handful of high school volunteers who aren’t really equipped to do more than shout encouragements; they certainly can’t handle angry physical outbursts.  Once again, a “special needs” activity where they really wanted cute, smiling kids in wheelchairs.

Finally, this summer, we opted to try the adaptive day camp at the rec center.  I was unsure about it because the brochure said they had to be able to function in a 1:4 ratio.  But, after talking to the camp director and supervisor, I decided to give it a try.  Here we are, 1 ½ days into the camp, and I’ve already had to withdraw my son; the camp was not designed for him.  The young student counselors didn’t know how to handle his behavior and the activities were too unstructured and too high level for him.  I’m glad that we tried, but sad that once again, the program was intended for higher functioning special needs kids.

Don’t get me wrong, I definitely think higher functioning kids have their issues.  In some ways, they have it harder – they are high enough functioning that most of the time, they “pass” for neurotypical, such that they are judged more harshly when they do have behavior or learning problems.  Sometimes, their parents have to fight to get school services for them because it seems as though they don’t really need them.  No one would have any doubt that my son is disabled  after mere seconds of interacting with him.  He is (mostly) forgiven for his behavior in public because it’s clear to nearly anyone watching that he is not neurotypical.  There’s never been any question that he will get the school services he does because it’s readily apparent that he needs them.  But it’s hard for me to be sympathetic because there simply are so many more things available for these higher functioning special needs kids.  I find it hard to muster sympathy when an acquaintance tells me that her high-functioning ASD child is having trouble mastering the use of pronouns.  Hello, my son hasn’t said a word since he regressed at age 16 months, and I’m mainly worried about him drawing blood when he attacks me and/or him smearing poop on the wall when he cannot manage to wipe himself in the bathroom.  Difficulty with pronouns would be a dream problem for me to have!  Whereas people with higher functioning ASD kids can do things like go to sensory friendly movies and restaurants with GF/CF menu options, we stay home because my son cannot handle even these simple things.

And before you start bombarding me with advice about different biomedical approaches to try, please know that in my son’s 10 years of life, we’ve been to 4 different DAN! doctors and tried every single supplement and dietary intervention they could think of; many of them more than once.  We’ve been to Dr. Krigsman, had our son’s GI system scoped several times, and had him treated for autistic enterocolitis.  He is physically much healthier now, but he’s still just as autistic as he was beforehand.  The DAN! treatments helped with his physical problems but didn’t really touch the autism symptoms.  We did ABA for as long as our health insurance paid for it.  He is on a strict gluten-free diet (he also has celiac disease), but we noticed no benefit after trying other dietary restrictions.  I’m not saying there’s nothing left to try with him and that I’m giving up hope, I’m just saying please don’t assume if we just tried “x” biomedical intervention, we’d be on the path to recovering him.  I think this is just the best we’re going to get, at least for now until they come up with new, improved things to try.

So, my son and I will be home together this summer again, after all.  Luckily, due to his behavior, he always qualifies for ESY (summer school), so we’ll get a few hours of respite here pretty soon.  I guess that’s one of the few benefits of having a more severely affected child!

Jennifer Flinton is mom to her only child, 10-year-old Jimmy, living in Round Rock, Texas.  Due to the severity of Jimmy’s autism, Jennifer works very part time for her local school district, but is essentially a stay-at-home mom.  She is very thankful for her wonderful support group of other autism warrior moms in the Austin, Texas area.

Comments

[gina]

To all parents with children of challenging behaviors, please join our group for support, networking, and information.

http://groups.yahoo.com/group/autism_challengers

Thanks,

Gina

[Carter's Daddy]

I forget who said it but there's a famous quote about how any government willing to sacrifice 1% of the children in order to protect the other 99% from disease(nevermind that they don't need it or it's not protecting them) has the responsibility to take car of that 1%. All the things we are doing to help our affected kids should not be costing us one red cent. They've certainly failed in that! You can't even get a basic playtime program for them. They know better than we do what these jabs have done to our kids. They consider it an acceptable ratio. Nevermind how maddening that is to the parent of one affected child, the jabs actually affect ALL kids, but if it isn't Autism they are considered unaffected.

[VMGillen]

Interesting that no one cut to the chase: this is directly attributable to the APA, which has done a serious, serious disservice to those with what I call "no kidding autism", people with "challenging" behaviours, non-verbal, engaging in SIBs... THIS IS THE APA's DSM causing problems - combined with ASD as the "Dx du jour." Providing services to the autistic population has proven to be a much more reliable income stream (comparatively speaking) for agencies providing services... the spectrum is just that, and it allows Agencies to cherry-pick the individuals served. Get rid of the spectrum.

And, yes, this could be an ADA violation... but good luck. while things are slowly getting better, the ADA is still primarily used on mobility-specific access issues.

PS- recreation, not socialization, was my primary concern. I found High School football teams LOVED working with my guy - parochial schools were willing to have an ASD behaviourist come in and give tips... I doubt the publics would, thanks to liability issues.

[Anj]

It seems to me that hiring a professional, trained aide to accompany a child who attends these programs would allow any child with behavioral challenges to attend safely and get something out of the program.

Expecting a program to have an experienced, trained person who can take time out from their other responsibilities to do one-on-one interventions with ANY child, not just yours, is too much.

Imagine if there's one high needs child at a session. Or two? Or three?

Now imagine a session with multiple high needs children who have their own aides to stay quietly out of the way until they are needed. Huge difference.

[Scott Alllen]

There's an old saying "crabs in a barrel" that applies well to the autism community, and how we are always attacking each other. I have (or had before he regressed) a less severely affected child, and while we don't have the same problems to contend with, in some areas our problems are worse. The author talks about her son being excluded from extracurricular activities for special needs children, and while my less severely affected son can participate in some of those, there are few acceptable school options for my child. We all want better schools for our children, extracurricular activities that can be shared by all, respite for families, and assisted living options for adults on the spectrum, and we as a group need to be focused.

My son was hyperlexic and can be a sponge academically, but he is clearly on the spectrum with the fears, sensory issues, meltdowns, social skills problems, and other related issues. Due to his academic gifts, schools refuse to provide him ESE services, and due to his ASD related issues, he is not provided academics at or near his level. Finally, because their issues are not as apparent, they are a more likely target for bullying, and both other parents and school staff are less likely to protect our 'poorly behaved' children from such attacks. So while the authors son is excluded from many extracurricular activities, my son is in effect excluded from school. The public schools refuse to teach them, and there are almost no appropriate private schools (none in my current or previous city). Furthermore, the private schools that come close won't accept them due to their behavior issues.

[Jan Pedatella]

I read all of these comments with both relief (that I'm not alone) and sadness because of the difficulties we and our children face every day. I appreciate hearing about techniques that have helped other children. Because it's important to know that there are things we can do to help our children live better lives... it's just a matter of trying different things and seeing what works for our child (and I'm always curious to learn about something new). One thing I haven't read about here, that has helped my son tremendously, is NAET Allergy Elimination Techniques. I really want to share some information about this technique that has helped our family so much. I have learned that many many autistic behaviors are caused or worsened by allergies. Children can be allergic to almost anything (foods, environmental things, things they breath or touch, hormones and things within their own bodies can be out of balance, the list is endless), which can cause or exacerbate their symptoms (for example, the child mentioned above with ES could actually be treated for that sensitivity to electricity and may not be bothered by it any longer!!!!). Find a NAET practitioner in your area and have them tested for allergies. Once you determine what their allergies are, you can treat them and eliminate them with these techniques. Their behavior and mental functioning greatly improve as a result. I tested my son and discovered that he was allergic to numerous food nutrients (vitamins, sugars, acids, phenols, artificials, iron, the list goes on and on). Elimination diets helped alot, cutting out artificial colors particularly (we used the Feingold diet and Fed Up with Food Allergies as a guide), but I found he reacted to almost everything he ate. After receiving NAET treatments for those allergies, he is much calmer, happier, and more manageable, he is more mentally alert, more affectionate, just unbelievably better. It is easy and painless, it just costs money... you have to pay out of pocket for each treatment. But it has changed our lives. And it's amazing how easy it is... almost like waving a magic wand. (The hardest part is avoiding the allergen for 25 hours after treatment, but its manageable!! read about it on the website and search for a practitioner in your area if you're interested). The website is www.naet.com and read about NAET and Autism. It has changed our lives. Best of luck to you all!!

[Theresa McCarthy]

"Your child must also be completely toilet trained. Children are expected to be able to interact, communicate and participate without substantial individual attention and prompting."

This is from my town's website describing the requirements for their special needs camp. What I don't understand is, how is this legal? What about accommodations? Doesn't the Americans with Disabilities Act or some other law apply?

I understand that people don't want to deal with unruly/needy kids. But if the government is going to sponsor services, it seems to me that it can't systematically exclude certain people based on their disability. Can they say "no kids in a wheelchair" or "no blind kids"? No! They shouldn't be able to say "no kids with communication or behavior problems." That's discrimination.

Maybe after a few towns get sued, they will stop kicking kids out of the special needs camp and instead put in some supports to accommodate the "extra special" kids.

[pdd2dad4]

Been there. We have two kids with autism -- one is high-functioning and aggressive; the other low-functioning and compliant. The aggressive one kept getting kicked out of programs. The compliant one was allowed to remain, but never got anything out of the programs.

Like you, I know my kids are in there and I'll keep trying to reach them. A treatment that seems to be helping both kids is neurofeedback: www.thebrainlabs.com

[karen]

I've lived both sides of the coin. Severe to recovered language but now very LD. My best advice is to keep trying.
My son was a runner who had random crying meltdowns at the worst possible times. We have been to many places where people were just jerks. Like the day we got kicked out of the local library because my son took his shoes off. Yet in the midst of things we found compassionate people in places we sometimes didn't expect. Like story time at another smaller library in a less affluent part of town. (Also, if you haven't tried it nasal Oxytocin stopped a public meltdown in it's tracks for us. I once times it and it brought peace in under 5 minutes.) I pray that you keep venturing out and find some small way to integrate. For your sanity and your son's quality of life. Completely shocked a SPL would reject your child in such an awful way, they are trained to work with our kids and I would write that one off as completely unprofessional. Very glad you did not give her 2 weeks more of your time and money. Would not let one bad apple keep you pent up in the house. There are other programs and therapists that value and respect what families on the Spectrum go through.
Hugs and hang in there....

[Trina Aurin]

I am so sorry that your adorable son has not been accepted into areas outside of school. What do they think, that our kids are typical kids? We have children with Autism so they are going to act differnt sometimes or many times - that is why they have these groups! Since I am a red head I feel a kidship with your son. I have 7 year old twin sons - one who is on the spectrum and one who has an inoperable brain tumor - My son who is on the spectrum has off and on days - since he looks like any other kids those off days are tough because I see people looking at him and judging him and I know this should not bother me but sometimes I just want to smack them........of course I do not. BUT I sometimes give looks back! As for my other son he is doing fine and we have to monitor him but he is our little therapist and loves all of the kids in my sons SDC class. I will be thinking positive thoughts for you and your son.

[Kelly- David's Mom]

I'm so glad you wrote about your experience because it mirrors my own. We've been asked to leave so many so called special needs/autism activities that if I had a dollar for each event, I would have a spanking new pair of Louboutins!

I keep trying.

Kelly

[che]

Thanks so much for the article.
My child was kicked out of a religious special needs group.
They sure won't get a donation from me.

[LisaL]

There is no doubt we need more programs for kids who exhibit the most challenging behaviors. However, I have one of those "higher-functioning" kids for whom you are unable to muster any sympathy. Think it's been easy finding services and activities for her? Let's start with school. There are NO appropriate classrooms to meet her needs, so I'm homeschooling through a cyber school, teaching the entire curriculum because she's bright but learning disabled and can't work independently. Sports programs? Well, we weren't asked to leave TOPS soccer, but I had to make the decision to remove her from the program two years ago. She developed such anxiety over the color of the team shirt that she was unable to sleep the night before each game. The end result was the same. Like your child, she was unable to play. Social skills groups? She participated in a group led by a speech therapist, who used her as an example to the other kids of how not to behave. Camps? She attended quite a few where she was required to have her own aide (provided by an outside agency), and her success was measured by how well she blended in with the "typical" children. In that sense, she was set up for failure. Even with an aide, she was overwhelmed by the noise and activity level and spent her days covering her ears.

My daughter has responded well to biomed, so things are a little easier these days. We've also found more appropriate services, camps, and activities for her. Still, I can never quite relax, as I know a bout of yeast or clostridia can throw her into a tailspin. I haven't forgotten being told by one doctor after another that there was nothing that could be done for her, or that she should be hospitalized. I can't forget for one minute that she was abused in her previous school setting and that it could happen again, as "high-functioning" children don't necessarily have the ability to communicate when abuse has occurred.

Even with the resources we now have, unless my daughter recovers, her future is very uncertain. Where I live, there are no adult services, waivers, or job coaches for those with autism. Without recovery or a very significant level of improvement, it is doubtful my daughter would be able to live independently. When my husband and I are gone, there will be nobody to care for her. In that sense, the outlook for my "high-functioning" child is just as bleak as for one with more severe autism.

[Veronica Grant]

A great article and I agree with everything you wrote 100%.

[Jaki]

Excellent article! My son is also nonverbal and low functioning. There are many special needs services in my area, but I'm often told they can't handle him. He's been "kicked out" of two camps, an after school program, a special needs bowling team, and a drop in respite program because they are not equipped to handle a child who is nonverbal and had behavior issues. It's a sad state when the population that needs it most is being refused.

[Terri Lewis]

What Angie said.

Also, the entire piece. Friends, neighbors. . .everyone is in love with the special kids who don't pose a challenge with behavior.

Otherwise. . .not so much.

[Jan]

EXCELLENT Article. I loved it, especially since i have been in your shoes more than once; like the time I had my son join an Arc sponsored adult softball team. The coach screamed at the players for minor mistakes and had no understanding of why it would take my son awhile to get used to the batting helmet due to sensory issues, and then got angry and testy about it. Needless to say two practices and we were done with that special needs program. And don't even get me started on our experience with Special Olympics.
Thanks again for sharing your story. You have let many many other parents know they aren't alone in their experience that their child was 'too special' to be a part of a special needs program.

[Angie]

Jennifer,
I am so saddened by your story. I actually have two very high functioning sons, however when my older son was younger he had horrible outbursts. He was fully verbal and would look the therapist in the eye and say "I don't like you and I don't want to be here". I was told on more than one occasion that he was "severe" by professionals that didn't really understand Autism. His defiance was severe, yes, but not his Autism. I was also told by speech that if he didn't get nicer that he wouldn't be allowed back for speech that he qualified for! Early intervention really seemed to dislike my kid, even when he was progressing and I think it was because the progress wasn’t there with behavioral compliance. It was there in his speech, social skills, as well as occupational therapy. My nephew, who kind of just stays to himself and flaps in the corner, is the kind of kid they ABSOLUTLY LOVED! (We had a lot of the same therapists/early intervention people). My son’s hyperactivity and unhappy demeanor drove these people bonkers. Just like Vicki Hill said above, these places aren't equipped to handle a lot of the behavioral aspects. I think a lot of them really don't know anything about Autism. CRAZY! I am so very sorry that you are frustrated; my heart goes out to you that you are struggling to find the right supports for your son. I hope that you ultimately find something. Truth be told, I am so burned out trying to find the “right fit” for my kids over the years that we don't do much. I never ever forget about kids on every end of the spectrum. Biomedical has worked for us (praise the Lord) and I will never stop fighting (even after recovery) not just only for my kids, but for everyone else’s too.

[For Raymond]

Jennifer;
I am sorry.
In the picture, he is smiling so sweet with all that beautiful red hair. -
You are not losing out on anything by spending summers together - it is an excellent idea.
We are on the go too much, and I am not so sure that long quiet times are perhaps more important than anything you could do for your child.

[Elizabeth Thode]

What a great article. I'd like to add to this. I have a daughter who is ES. That means she cannot do wifi, wireless technologies. Imagine how many opportunities were not made available to her, because there are to date, no schools in my area that acknowledge the hundreds of Scientists, thousands of studies/papers describing the harm and biological damage from wireless technologies. Although France has removed wifi from their libraries and some progressive schools have heeded the warnings on wireless.
There seem to be two white elephants society keeps tripping over. One is Autism and the other is Electrical Sensitivity. And they are related because children cannot heal in an environment bathing in these damaging fields of electro magnetic radiation. Ironically, I can get the wifi and cell phones out of my house. I can heal my child of candida, heavy metal poisoning, ect. But I cannot get most people to understand they are so contributing to both the autism and the ES, by using their handy dandy cell phones.
For those of you who need to hear this from a real Doctor, google: Klinghardt and emfs. Then google: Magda Havas, and the BioInitiative Report. Please open your minds people. Cell phone technologies and the radiation they put out, play just as big of a role in Autism, as those toxic vaccines. They also share something else. We were lied to about the safety of vaccines and we were lied to about the safety of cell phones. The body cannot repair and heal if it in the field of radiation. No matter how many bio therapies you use.
Blessings,
Elizabeth Thode

[tiredmom]

This is such a great article! Thank you for writing it! It really should be sent to every organization that provides programs for special needs kids! My son has severe problems and I have never found a program that was good for his needs. We have just gone to mainstream programs and sent a parent with him. The special needs programs either have a 1:4 ratio which is too high for my son (he needs 1:1) or they have a lot of swimming (my son is terrified or he swallows the water and chokes) or they require toilet training, or they involve meals or snacks (my son will eat everyone else's food). I find that many are just so expensive too and often inconvenient. Also, I have never felt that they were safe enough. I completely agree that they are geared to children who are higher functioning. I wish they would label them Aspergers' programs so that there might be suitable programs for low-functioning kids as well. Really Aspergers' and Autism have such different needs that the programs should be separate. I agree that it is a lot easier to work with kids who are just a bit slow or need extra help rather than for kids like my son whose body goes in all different directions and who screams a lot. I just feel like we have no place in the community and that we should just crawl into a hole. (PS: We have done tons of biomed too and it didn't work for him but I would choose a cure over better programs any day).

[Sally Lyons]

What a warrior you are. I know this because you are my friend and help me out when my life gets too crazy with my son. You've hit the nail on the head. And as you know, my son has trouble getting therapy anymore because of his size. Most good therapy places are geared to the smaller children. Once they start to become bigger and older there is pretty much nothing. Thanks for writing this article. I feel every single ache that you have. Much love for you and your precious little boy with the great smile and laugh.

[Jen]

Thanks for your input, Jennifer, it's reasons like this I wrote to Mishubishi. How dare monies be spent on groups that don't even support crucial issues like wandering. It's ridiculous and shameful.

[Autism Northern Ireland]

So many people have said, 'they could have written this' and Tanner's Dad said, ' I thought this was me' - whew, i was glued to this piece your wrote! I really REALLY thought it was just us who went through this and this is despite knowing so many parents and kids with autism - but it seems it's been my child who always got excluded or couldn't cope.

brilliant piece - will surely make some people think about things - am sending to all those who work in a 'professional' capacity with kids on the spectrum. So very well done and I thank you for that for putting words to what I and my family have experienced so many times.

[Tim Kasemodel]

Jennifer,

Thank you for writing this. It is amazing how many AoA parents could write a bio for each others kids.

In Minnesota we are struggling to help the different disability advocates and groups to fully understand the differences that the severely affected child with autism has compared to that of those with say, downs syndrome or muscular distrophy.

What is VERY clear is that no one wants to hear about the UGLY side of autism. And yes, I believe that may include some parents with higher functioning kids (e.g., the neurodiverse). My wife and I stood on stage at the State Capitol on May 2nd and were able to tell the ugly truth to a small group of attendees. Many had tears, many looked as if in shock or disbelief at what they heard about our journey with our son.

We were filmed along with all the other speakers that day. I am hoping to write a short essay for AoA on "the ugly side of autism" and link to it when it becomes available online at the Autism Advocacy Coalition of Minnesota website http://www.autismminnesota.org/

The TV news crew that was there chose to interview a high functioning teenager (a most awesome kid BTW) and show a fluffier version on the nights news. They conveniently left out all the info his warrior mom gave them about how biomed is what produced this success story IN SPITE OF the mainstream medical community.

I also encourage you to write again!

[Lisa B]

I feel your pain, you are not alone.

[Vicki Hill]

Even us parents of the so-called "high functioning" have been in this boat, Jennifer. Most programs are not equipped to handle any kids who have "behavioral issues"...as if the kids were choosing to behave this way rather than it being part of their disability. (In one program my son was in, a professionally-trained leader told me that I needed to tell my son to respect the teachers. I told her that, if I could change that aspect of him by simply telling him, he wouldn't need to be in her special needs program in the first place!)

Some people feel that all special needs programs should handle all people with special needs. I disagree; it is unlikely that staff can be trained to correctly manage every single type of special need that is out there, or that a single program can be adapted to meet the needs of people with a myriad of different challenges. Better, in my opinion, for the program to be honest upfront: "We can handle x, y, and z." The best programs are often developed by parents who have lived it. I would encourage you to consider what type of program would work for your son, then talk to some friends with similar situations and create your dream.

[john lorek]

Jennifer, This is why We started CTX Ability Sports.

We allow all children with Disabilities and their siblings to play for free!

There is only one rule! And that is to have fun. Each child grows at their own pace and we use sports to teach life skills!

We have several children with severe Autism and they just have a blast running in the outfield in their bare feet!

The parents love it because it is in a fenced in envirionment and they can let their child roam.

We would love for you to give our organization a shot! I have 2 special needs children and they do not have Autism but I have learned so much in the past 2 years simply due to 70% of our children live with Autism.

You can call me anytime at 512-212-1259

www.huttochallenger.webs.com

John S. Lorek

[Gayle]

Jennifer I also can identify with your experiences! I have an adult son with autism and I remember being told by a few nursery school teachers that my son was "unteachable" and should be "kept at home"!) He is now an adult and has been eliminated from two supported employment jobs because of inconsistent work performance. I realize now that he was expected to measure up to the level of performance of a "regular worker" and not as a person with autism. We have a long way to go for the future acceptance of autism and all that goes with it!

[Billie]

If you are looking for something new..... it isn't new to some, but it is new to others. Testing for parasites, bacteria, etc using DNA analysis is very new to some doctors. If you've done comp stools in the past that were clean, but they didn't test using DNA analysis, you might give it a try. They are picking up everything in these tests that come up negative in others. I think there are only 2 labs that do it, and Metametrics is one of them. Prayers to you.

[Sandi Busch]

Truer words were never spoken. I was with you all the way, thinking how similar my son's experiences have been. But I cringed when I reached the paragraph where you suddenly diverted to talk about higher functioning kids. You see, my son is "higher functioning," but throughout his school years, he also had the very same severe outbursts and aggressive behaviors that you've described. We've had a long parade of professionals throw their hands in the air and give up. It seems some, maybe even many, are only comfortable working with a very small sampling of kids with autism. There is a lot of lip-service about it being a diverse spectrum, yet so little real-world understanding of how to help our children who do not fit into someone's neat little compliant mold. Here's more food for thought ... services aren't any easier to find, or more available, or more appropriate for many high functioning kids either. In fact, in the state we just moved from, they had stopped providing any services for high functioning kids, saying they didn't need help. So what do you do with a child who is high functioning and exhibits more extreme autistic behaviors? You have a great point about problems with services that are advertised as "special needs" versus the reality of the population of children they can effectively serve. My heart goes out to you and all of us struggling with these challenges. But can we just once not bring the guaranteed-to-create-dissension issue of high versus low functioning into the picture? Blessings to all of us!! Sandi

[Raymond Gallup]

As a parent/father of a 27 year old son with autism and aggressions, Eric, I can not give any good advice. The minute Eric started to have aggressions in 2001 (at age 16), he was persona non grata at his "special" school and lots of other respite and other types of programs. He was suspended and then terminated at his school before he reached graduation. Eric is non-verbal as well and has to use a PECS book to communicate.

Eventually in the winter of 2004 when things got worse and he was terminated from his "special" school, we had to get a lawyer to place Eric in an out-of-state residential center after going to Kennedy Krieger Institute for several months in Baltimore, Maryland. Without a lawyer, we would have been screwed and the final bill for the lawyer was $5,000.00. The lawyer was our only friend, not even the people at Eric's school were on our side. The person in charge of the school and founder who had an adult son with autism and knew Eric well, treated Eric as a stranger....even worse, as persona non grata.

Where Eric is now, there are kids as young as 8 years old in the residential center because the families didn't get any help and it is the place of last resort. Sad and unfortunate, but reality.

The upside is it is a locked facility and the people there say they like Eric and treat all the kids like a big family. It isn't perfect by any means but it sure beats the alternative of having Eric home causing injury and chaos along with holes in the walls and broken doors....and no one from the outside to help us. Once children become young adults and graduate from school, it is a whole new ballgame. If families can't get help when their children are in school, then that is definitely an indication of what will happen when their children become adults....it gets even worse. I'm sorry I can't be more encouraging.

Sad and unfortunate, but reality. I speak from experience and the school of hard knocks.

[Anne McElroy Dachel]

Thank you, Jennifer. More evidence that the world doesn't know what to do with severely autistic children. What better proof is there that this is a new phenomenon? If these kids had always been here, diagnosed as something else, we'd have lots of things for them to do. Imagine what's going to happen when Jimmy ages out of the school system. Where will he go when mom isn't able to care for him? This is what I worry about most. This is what no one wants to talk about. All the experts who tell us that it's just "better diagnosing" going on never have to show us where the adults like Jimmy are. I can only imagine the LIES that officials are working on to explain what's going to happen when all these kids reach adulthood.

Anne Dachel, Media

[Jillba]

I could have written this article. I have had the same experiences with my son. If a family member of mine read this, I am sure they would have thought it was me that wrote it. Amazing.

[ellen]

So sorry - we dont have it quite as bad but i do know the feeling of having to go get alex early from his special needs camp because he got violent - maybe someday there will be more available for our kids

[Michelle]

I am so sorry about your son. I can sympathize with your frustration. I was there, too.

When I read your essay, I already knew the 'intervention' you *haven't* tried, because if you had, I'm certain your boy would be massively improved.

There seems to be a disconnect here at A of A. Several contributors here acknowledge that heavy metal toxicity *causes* ASD, so why isn't heavy metal removal (via chelation) discussed as a cure?

My son (non-verbal at 4) had many of the same issues that your son does. After 2.5 years of Andrew Cutler's low-dose, frequent chelation my son is nearly recovered. I say this not to 'brag' but to encourage you to try it.

[Aimee Doyle]

Hi Jennifer -- I feel for you and I've been there...am there. My autistic son is now 22 and still significantly impaired. Since my son was diagnosed at age four, we have tried all the DAN recommended biomedical therapies, the entire five year ABA program, speech therapy, occupational therapy, sensory integration therapy,auditory integration training, vision therapy, music therapy, art therapy, therapeutic horseback riding, various pharmaceutical interventions, 18 years of special education...

I have a son who still screams, sometimes for extended periods of time, hits himself on the head, hits others, and suffers from a crippling anxiety disorder in addition to his autism. Just yesterday, an aide who was transporting him to his day program called and told me that my son screamed so loudly (and hit the windows of the car) during the drive, that the aide had to pull over. We were told that we had to figure out a solution, since my son's behavior "wasn't safe." I agree it wasn't safe, but who is working on solutions to the problems of those with lower-functioning autism? The scientific/medical community doesn't seem to be interested in anything but doping them up.

I often feel that those individuals from the midde to the lower end of the spectrum are forgotten. Like you, I have found that many programs are not appropriate for my son. The "autism community" -- even many individuals with ASD themselves -- Asperger's and HFA -- would prefer to ignore the needs of those who can't actively participate in their community.

Very frustrating.

[Donna L.]

This has been our experience as well, every step of the way. I wish they would just start slapping a nice little logo on all the brochures and printed material for these activities, programs, therapies and even schools: "Children With Severe Autism Need Not Apply". It'd be so much easier and less heartbreaking.

Thank you for stating publicly what so many of us are left grumbling, alone with our kids, behind closed doors.

[Stagmom]

"Even among misfits we're misfits." Hermie the dentist.

None of the old special needs activities programs are equipped to handle autism. We are in our own ghetto - like it or not. the epidemic is new enough that we've started to find autism only special needs programs - like schools have had to implement special classrooms and programs just for autism. We can't kid ourselves that Easter Seals or Special Olympics has a clue how to help us. They do NOT.

My kids participate in a Special Olympics basketball event each spring. The kids with Down Syndrome strut in like they own the world, ready to play, smiling, thrilled to be there - the kids with autism come in with hands over ears, walk in all directions, have to be re-directed by their 1 on 1 and then howl when the STUPID buzzers go off - who the hell uses buzzers in a gym full of kids with autism? Special Olympics!

[Teresa Conrick]

Jennifer,

You are not alone and thank you for writing about this. I totally get all of this and Jimmy and Meg look like they could be brother and sister - both physically -- and in so many other ways.

Since you are home so much, like me, please add me to your extended support group. Would like to talk- tconrick@gmail.com

[Parent]

Jennifer I am so sorry . . . I get so angry when I read stories like yours. It helps me keep my resolve to question everything when it comes to mainstream medicine. God bless you and your son.

[AnneS]

Boy this sounds familiar.

[Shelly Sulkoske]

So sorry to hear of your struggles. We too have had a lot of problems fitting into the very same programs you mention. Not because of compliance, however, but because of our son's diagnosis of "autism" instead of MR or Down's Syndrome. We never even received a returned phone call from Special Olympics, even after I called about six times and left messages. I believe these programs are quietly screening out the autistic children, because they don't want to have to adapt their program to fit our kid's special needs, whatever they are - even higher functioning kids often have idiosyncratic behavior disorders. That said, I know that we have personally witnessed great behavioral improvements through home-based ABA (I got training with an ABA therapist and did it myself at home using the ABA manual and programming recommended by her)
We never had any insurance coverage. So that was a luxury we have always done without. The electronic voice communicators like dynavox also helps because if they can't communicate they will use behavior to get the message across. I am sure you know what I mean. Anyway, all the best in your continued search for finding what works best for your son. I thought we were among the few remaining in the search for some kind of fun recreational activity. I hate to have to fight for these services, too, when we already have to fight for so much else. Just wish they could see how much our kids need these activities in their lives.

[TannersDad Tim]

I thought this was just me, Thank you for sharing -TannersDad Tim