The new incidence rate for autism is 1 in 88 children. Wednesday, May 9 2012

New incidence numbers came out last month, and the CDC announced that the rate of autism is 1 in 88 children and 1 in 54 boys.  Those are epidemic level numbers. However, I waited to post about this until almost everyone else had their say.  My reason is pretty simple. This incidence rate doesn’t change anything for me personally.

Don’t misunderstand me. This level of incidence is a public health crisis. For some reason, however, our government officials don’t see fit to do anything meaningful about it. They throw a few dollars our way and check it off their list, not even thinking that the pittance provided doesn’t scratch the surface of the true need.  I guess if our kids were dying in droves there would be more of a sense of urgency. As it stands, however, the bulk of our resources are shifted to other issues, like oil subsidies and corporate tax breaks.

My main point, however, is that my incidence rate hasn’t changed. I have one son, and he has autism. My incidence rate is 100%.  Our family situation hasn’t changed, although now there will be more families that will be in our situation. My son’s challenges are still the focus of our family’s  attention, and no public policy announcement or incidence rate update will change that.

I know some folks who were a little down because of the rate change. My advice is not to let it bother you. That rate is a number taken after the fact.  It doesn’t cause the rise, nor does it affect the outcome. Our kids can learn. Our kids are smart. Our kids can grow in ways the world is not ready to understand. Let’s keep working to change our world into a world our kids can live in freely.

 

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April 2012: Autism Acceptance Month Friday, Apr 20 2012

I normally write these posts on World Autism Awareness Day, but this year I’ve been so busy I haven’t had time to write until now. Also, I have a lot to say and wanted to let my thoughts coalesce into a more solid form prior to posting my annual self assessment. I like to take stock of where my family has been and where we are now, and I finally feel ready to do that.

First and most importantly, Raymond is doing well. After going through absolute hell the first half of the school year we finally had the supports put in place to help him be successful. Now that he is properly supported he is shining again. We have more language, more engagement and more social interest than ever before. He is consistently completing work on a second and third grade level even though we kept him back in first grade.

Second, our family is doing wonderfully thanks to the addition of our amazingl therapy dog Blue. You can see my other posts on Blue here on the site, and I’m preparing to post a huge update on Blue in the next week or so. Blue has lowered our overall stress level and, I believe, is a creature of pure love that was sent here by some celestial force.

Third, my wife and I have grown both as people and as advocates. We have learned how to parent using positive reinforcement instead of folksy but ineffective reactions. We understand both IDEA and Section 504 much better, and can effectively argue discrimination with the most well trained school officials. Most importantly, we have not lost our love for each other, as our shared struggle has only brought us closer.

Fourth,  I have finally managed to bring the Autism Society of Northern Virginia into our local community with our first Autism Acceptance Walk. You can check out the details online at http://autismacceptance.org/. We also managed to put together our first Sensory Friendly Movie with the help of Muvico. Hopefully we can have some more, and soon!

Finally I want to thank everyone who has helped us and continues to help us. I want to thank the people who believe in Raymond, because he is an incredible kid and deserves that belief. I want to thank our friends who stand by us even when we’re having a rough time. I want to thank Don and Karen, my in laws, for everything they do for us. We literally could not do it without you. And in closing, I want to thank my incredible wife Kelly, without whom none of this would be possible. I love you.

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2012 Commonwealth of Virginia General Assembly: Autism Action Items Tuesday, Jan 10 2012

Okay, the Commonwealth of 2012 Virginia General Assembly starts today and those of us in the Virginia autism community should roll up our sleeves. This year is a long session and we have a lot to do.I’m focusing my efforts on a few things, and recommend everyone out there do the same.

1. Support the Virginia Autism Project in getting a legislative fix to the ABA insurance coverage issue. Short version of the story: Last year a law was passed making ABA a covered benefit for kids with autism between ages 2 and 6. Governor McDonnell added a rider that required state licensing of BCBAs, which we agreed to because he assured us that it would not affect ABA coverage while the licensing process was developed. However, in November Governor McDonnell told us that there was no way he could honor those statements and the only solution was to get the legislature to fix it. Insurance companies started charging for this benefit on January 1, 2012, but refuse to pay for any services using the licensing issue as an excuse. You can read more on it at the Virginia Autism Project’s web site. There is also an Autism Day On The Hill planned for January 12th. I will not make it, but instructions are right here if you want to go. I urge anyone who can make it to show up. If you can’t make it, please write and/or call your senator and delegate to let them know you need their help.

2. Advocate for Developmental Disability waiver slots in the next budget. As of right now there are none. With a wait list in excess of 1,000 it is irresponsible of the Governor to submit a budget that does not even consider our children and adults. Call and write your representatives.

3. Push to keep the GA from cutting additional funds from already underfunded services, like waiver hours, respite and the like. The current budget reduces waiver hours. The Arc of Virginia released a budget hearing tool kit that outlines the key issues.

If you don’t know how to contact your state representatives, you can do so at the General Assembly “Who’s my legislator” page. I will be updating this page as the session develops, so check back often. Happy advocating!

Update 1/19/12 Please contact your delegate and ask them to support HB 1106. We need 80 votes to fix this ABA issue. If you need information on what to say or how to say it, go to the Virginia Autism Project’s page.  Teresa Champion has an email form letter and other goodies to help get it passed.

There is another bill that needs our support. Many parents want to observe their child in the school setting and are told “no” by the school for a variety of reasons.  Bill HB400, introduced by Patrick Hope, will help resolve that issue by requiring school districts to have rules regarding observation. The summary on the HB 400 bill tracking site reads “Local school boards; policies permitting parents to observe children.  Requires local school boards to adopt and implement policies that would ensure parents may act as an observer in the child’s classroom.” Right now it is in committee, so contact committee members and try to get it moved forward.  While there is no docket available right now, you can find the committee info at this site.

Update 1/23/12: 1/23/12 HB 1106 has passed the house! Please contact your delegate and thank them for their support of HB 1106. We  got 96 yeas and only one nay. If you are in Delegate John Cox’s district, please send him a letter letting him know how you feel about his continued refusal to assist children with autism. His comments were particularly disparaging of the bill. The gist of his speech was that it was not possible to be pro business and help kids with autism. That sort of statement is totally out of touch with reality.

Also, we need to start contacting our Senators. Based on the folks we know on the hill we will have a tough time getting this bill out of committee. If you are in the district of any of these committee members, please ask them for their support.

District	First Name	Last Name	Capitol Email	Capitol Phone	District Phone
11	SenatorStephen	Martin	district11@senate.virginia.gov	(804)698-7511	(804) 674-0242
35	Senator Richard	Saslaw	district35@senate.virginia.gov	(804) 698-7535	(703) 978-0200
18	Senator L. Louise	Lucas	district18@senate.virginia.gov	(804) 698-7518	(757) 397-8209
32	Senator Janet	Howell	district32@senate.virginia.gov	(804) 698-7532	(703) 709-8283
23	Senator Stephen	Newman	district23@senate.virginia.gov	(804) 698-7523	(434) 385-1065
14	Senator Harry	Blevins	district14@senate.virginia.gov	(804) 698-7514	(757) 546-2435
2	Senator Mamie	Locke	district02@senate.virginia.gov	(804) 698-7502	(757) 825-5880
39	Senator George	Barker	district39@senate.virginia.gov	(804) 698-7539	(703) 303-1426
6	Senator Ralph	Northam	district06@senate.virginia.gov	(804) 698-7506	(757) 818-5172
1	Senator John	Miller	district01@senate.virginia.gov	(804) 698-7501	(757) 595-1100
22	Senator Ralph	Smith	district22@senate.virginia.gov	(804) 698-7519	(540) 206-3597
8	Senator Jeffrey	McWaters	district08@senate.virginia.gov	(804) 698-7508	(757) 965-3700
13	Senator Richard	Black	district13@senate.virginia.gov	(804) 698-7513	(703) 406-2951
40	Senator Charles	Carrico, Sr.	district40@senate.virginia.gov	(804) 698-7540	(276) 236-0098
22	Senator Tom	Garrett, Jr.	district22@senate.virginia.gov	(804) 698-7522

Also, The Arc of Virginia has put out a great guideline for budget advocacy. You can find it here. This has all kinds of great information on pushing for more waiver spots and not reducing the care we have.

2/27/2012  Okay, HB 1106 passed unanimously through the Senate! Please write your senators and thank them for their support. Also, the governor signed it, so it is officially law. Thank him if you like. My perspective is that he simply corrected a problem that his amendment created and cost our kids 10 months of coverage, so he won’t be receiving my thanks. He also could have fixed this by asking for a more favorable opinion from our Attorney General, but he elected not to do so.

HB 400 was defeated in committee. The vote is below. Please make sure your representatives receive either your thanks or your condemnation, depending on how they voted.

HB 400 School boards, local; policies permitting parents to observe children.

02/08/12  House: Failed to report (defeated) in Education (10-Y 12-N)

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YEAS–Cole, Pogge, Stolle, LeMunyon, Alexander, Ware, O., McClellan, Tyler, Morrissey, Keam–10.

NAYS–Tata, Landes, Lingamfelter, Rust, Massie, Greason, Bell, Richard P., Robinson, Yost, Yancey, Dudenhefer, Bulova–12.

ABSTENTIONS–0.

NOT VOTING–0.

There is another important bill that has come on my radar. HB 325 will require training of all school personnel be trained in behavioral therapy. This is huge and will really impact our kids where we need a lot of help. Right now it has passed the House and is in committee in the Senate. Please thank your delegates. You can see their votes here.  Also, if you are in the districts of any of the folks below please urge them to vote yes on this and get it to the Senate floor.

Martin (Chairman), Saslaw, Lucas, Howell, Newman, Blevins, Locke, Barker, Northam, Miller, J.C., Smith, McWaters, Black,Carrico, Garrett

You can follow the bill here.  I’ll try to advise on it as I get more information.

The budget is looking better. The House budget had more waiver slots than expected. However, we still have a huge waiting list for the DD waivers. Call or write your Delegates and Senators and urge them to fund more.

 

 

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Tips for folks who don’t know better: Autism does not equal insanity Tuesday, Dec 13 2011

Autism presents very differently from person to person. Its tough to look at someone and say “oh, that’s autism.” It is significantly more challenging to define and, consequently, much more difficult to pigeonhole. Because of that, many people assume that autistics have classic “insanity.” For the record, they are not the same thing.

Normally I would use reductio ad absurdum to show that the concept of insanity is outdated and based on a mental health model better left in the 1800s. I do not, however, have time to cover 100+ years of mental health so I’m going to say simply that the new crazy is much more well defined than the old crazy. The DSM-IV breaks out a number of conditions that were once lumped together. Autistic disorder is just one of those with an expanded definition.

Although autism can be viewed as a mental health issue, it is not strictly a mental or emotional disorder. The complexity is often hidden by its seeming invisibility. Nobody can look at someone with autism and say “oh, that person is autistic.” This helps feed the misunderstanding of the disorder.

Our people have different ways of expressing anxiety. Some hand flap, some walk in circles, and some spin. My son recites, verbatim, the character dialogue from any number of movies and videos. He finds it calming, and it helps him settle down. He looks a little different from your typical 8 year old, and this is where the problems begin.

I had a school administrator say to me “he was talking out of his head, like he was crazy!” Well, if you take what my son says out of context it might sound crazy. Rest assured though, he does not fit the classical definition of crazy or insane. He is reciting a video that he is literally watching in his mind’s eye. He replays these videos in his head and uses them to calm himself down.

The next time you see someone acting “crazy” I urge you to suspend judgement. I’m not saying don’t be aware, or make sure things are safe. What I am saying is that instead of assuming something different is dangerous and scary, examine the possibility that it may be wonderful and new. I am constantly surprised by the insight and perspective my son shows me. I’d like you to share in it if you can.

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Is it medical or educational? Wednesday, Dec 7 2011

I recently watched a local news story that upset me. You can watch it yourself at the WUSA Channel 9 site. It is about a 6 year old boy who came home wearing a weighted belt, which is an OT support used to help kids regulate themselves. The mother was quite upset and is calling it a case of restraint.

It may or may not be restraint. I can see both sides of the argument. In my opinion, the school did the wrong thing by putting a support in place without adequate supervision, as those belts are only supposed to be worn for 15-20 minutes at a time. The school also did a poor job educating the mother on why her son needs this intervention and how it helps him. I do feel that the mother’s reaction is over the top, but I can certainly see her point. If my son came home wearing a strange device I would be at the Superintendents office within the hour.

That brings us to the point of this blog. Are these supports medical or educational? The school typically argues that OT supports are educational, as many of them are administered by school staff with an education background and no formal OT training. However, since most occupational therapy supports address challenges with the central nervous system, motor planning and sensory processing, my argument is that they are medical interventions.

If you’re thinking “it can’t be medical because a doctor didn’t prescribe it” then think again. Many therapeutic treatments are recommended by specialists who are not medical professionals. Massage therapy is the first one that comes to mind. While massage therapists are required to attend school and be trained, their trade does not typically require a prescription to reap the benefits. The same is true of chiropractic care and acupuncture.

Occupational therapists, however, are medical professionals. In Virginia they are licensed by the Board of Medicine and have to pass a rigorous exam. They are also required to have a masters degree. It takes commitment and effort to gain the education and license necessary to practice this discipline. As with any other medical practice, there are additional sub-specialties available,

If you are wondering “why is the school providing medical care?” Diabetic children receive insulin in school. They receive it from a nurse, but the nurse is a school employee. The reason kids don’t need a nurse to administer OT is that many of the activities can be worked into the school day. Just as a nurse can be trained to administer a medical program, teachers can be trained to administer occupational therapy. They can be given a program to contribute to the child’s “sensory buffet,” the new term for the “sensory diet.” However, the consultative services of the OT are critical.

The reason you want an OT involved is the same reason you go back to the doctor for a follow up visit: to make sure things are working as planned. Sometimes the OT misunderstands the child’s issues and needs to adjust the program. Occasionally more exercises will need to be added, or the program tweaked to better fit the child’s sensorium. The OT also makes sure that things like leaving a weighted object on a child for an extended period of time are not happening.

So is it medical or educational? OT is a medical support that can be partially administered by educational personnel. Like everything else, having a professional trained in the discipline is critical for your team success which will ultimately lead to your child’s success. Make sure the school has an OT on your team if it is part of your child’s program. That’s the best way to make sure the little things aren’t getting missed.

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Tips for folks who don’t know better: Presume Intelligence Monday, Nov 21 2011

I’ve always wanted to help people who don’t know about autism find out about it in a simple, no frills way. This new series will hopefully do just that. The first installment is the most critical piece of dealing with autism, at least in my mind. When you meet someone with autism or aspergers, presume intelligence. By that I mean do not lower your expectations. Do not assume that because this person cannot speak, or speak well, he or she cannot think, feel or reason. Make no assumptions about a person with autism that you would not make about a typical person.

This seems like fairly common sense advice. After all, when I meet someone I do not assume their level of competence based upon their skin color, gender, accent, hair color, the way they dress or by the number of piercings or tattoos they display. That would be foolish. For some reason, though, when we meet people with disabilities that simple respect goes out the window.

Some of it may have to do with the disorder. Many folks with autism flap their hands, blink their eyes, recite movies tv shows verbatim or do one of a hundred other forms of self stimulation. “Stims” are common in our world, and those of us who live with folks on the spectrum tend to tune them out.

Another reason probably has to do with the simple medical discrimination that most people have on a subconscious level. The pseudologic seems to go something like this: “That person has a medical issue = They are sick + They can’t do as much as I can do.” Its sort of a contrapositive method of discrimination. I see it often and have argued it with several people, but it seems almost invisible.

Regardless of the reason for thinking folks on the spectrum can do less, I’m asking you to stop doing it. Take a minute the next time you meet someone on the spectrum keep in mind the difference between appearance and reality. Seen by itself, the internal combustion engine seems like an unwieldy and noisome creation. Once you sit behind the wheel of a modern automobile you know that those are not the only characteristics it has, nor is the appearance the only thing of value.

I also want to remind teachers not to lower your expectations for our folks on the spectrum. My son amazes me every day with the level of intelligence he displays, and if I had lowered my expectations early he would have suffered. Anticipate success, feed minds and teach hope. Presume intelligence.

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Election Day 2011 Tuesday, Nov 8 2011

This is my annual exhortation to my readers to vote. I would say that our contentious times require our vote, but we have a responsibility to vote whether or not there are difficult decisions to be made. I don’t align myself with any party, but instead try to vote for the person I feel will do the best job representing my interests, my family’s interests, my client’s interests and the community’s interests. If you want things to change, especially on the local level, you need to vote. My recommendations for the Fredericksburg and Spotsylvania races I’m voting in are below.

I do want to urge local folks to vote for Democratic Senator Edd Houck. He has been a stalwart supporter of folks with disabilities for many years. His experience as an educator has given him the ability to see how much help our kids need. He has also been a pro business candidate. I feel that Bryce Reeves attacks on him have been pretty far below the belt, and having heard Reeves speak I don’t think he will do a good job representing anyone.

I will also be supporting Republican Delegate Bobby Orrock this election. I’ve always been happy with Bobby. He is a centrist candidate who does a great job representing all aspects of his constituency. I don’t agree with every vote, but I do feel that he is a fair guy who evaluates each issue based on its merits rather than voting blindly along party lines.

This is your chance to make a difference. Make it count.

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The Training Quandary Wednesday, Oct 26 2011

I often hear from teachers, parents, administrators, therapists, social workers and even adults on the autism spectrum that there is not enough training and knowledge out there for our population. That means that almost everyone involved in the debate agrees that there has not been enough training or there are not enough trained personnel to deal with the up and coming explosion in the autism population. However, when I personally ask teachers and administrators to get more training for their staff, I am almost always rebuffed. Why?

I know part of it is that training costs money and we are in a tight budget cycle. I get that, but at what point is it more expensive to keep having IEP meetings that don’t meet student needs? How much money is lost by having teachers and administrators whiling away time at the IEP table. How much do the substitute teachers cost to keep classrooms maintained while the general education and special education teacher are at several meetings a week?

Another part is that autism is a heterogenous disorder that is wildly different from person to person. I get that too, but many things can be taught that will be supportive of the whole population. Simple things like understanding the knowledge gap, presuming intelligence in the affected person and visual organization skills help a huge segment of people with autism. This sort of thing can be taught in a one day training. What if that one day of training eliminated 3 days worth of meetings? Would it be cost effective then?

Is it that people just don’t want to learn? I don’t think so. I’ve been told by so many people that they want training, they want to learn and they want to figure it out. I put myself in their shoes and ask “would I take a class to get better at my job?” I do, and frequently. I attend classes, conferences, webinars and continuing education to make myself a better REALTOR. Why wouldn’t teachers and administrators want to do the same? Anyone who is proud of what they do wants to get better at doing it.

I don’t know the answer, but I do know that as a parent I will keep on pushing for more training. Teachers need better training in autism to help run their general education classrooms. Administrators need better training in order to prevent discriminatory disciplinary actions. Attorneys need better autism training to understand and represent their clients. Police and emergency services personnel need better training to respond better when a person with autism is involved. These people want this training. As a society, we should find a way to give it to them.

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The Family Educational Rights and Privacy Act, or FERPA: Part 2 Q & A with DOE Monday, Oct 24 2011

To continue and expand on our discussion of FERPA, I called the Department of Education for some clarification. The number I used was 800-872-5327 (800-USA-LEARN). I reached a courteous and knowledgeable woman who had some great answers to my questions. I didn’t tape it, nor did I get her permission to quote her, so the replies are my paraphrasing based on my notes of our conversation. If you have questions, I encourage you to call DOE. Be prepared for the post call survey though, which will come a few days later. It freaked me out when a recorded voice said “This is the Department of Education…”

Anyway, my questions mainly revolved around what constitutes an educational record. The first test, per DOE, is whether or not it is maintained. That means emails are a gray area. If the county maintains an email history as part of its usual operations, any emails referencing your child will be part of his educational record and therefore accessible to you upon request. Another tidbit she mentioned was that the school cannot destroy records after you request them, so if they delete emails at any time after you request them they have violated FERPA.

I also asked specifically about notes or journals taken by team members. The DOE rep said personal observations at a meeting are not covered, but transcripts are. That means if you are not recording your session but a team member is taking their own transcription then the parents are entitled to a copy.

Additionally I asked about school disciplinary records and incident reports, which are both yes. However, incident reports require either the permission of the other person involved (ie staff member or parent of another child) or redaction of that individuals personal information. Our school system has always opted for the redacted copy.

I also asked specifically about school systems referring to children by their initials. The DOE rep said that actually is done to protect information regarding children, as initials are harder to trace back to names if their computer system or electronic records are compromised. She did state, however, that an educational record is any record that refers to your child’s education by name or initial. My solution to that quandary was to make sure I specified “including educational records that use initials rather full names.” That was sufficient for my last FERPA request.

The bottom line is that if you need help interpreting these rules the DOE will give you good information. They won’t replace the advice of an attorney, but they might be able to help you figure out which direction to proceed if things get ugly.

You can read the first part of this series at http://raynelsonrealtor.wordpress.com/2011/09/09/the-family-educational-rights-and-privacy-act-or-ferpa-part-1/

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They’re our kids, not our causes. Sunday, Oct 23 2011

As the dad of a kid with autism I go to battle a lot. I fight stereotypes, debate our politicians and argue with the school. However, as much as I am passionate about the causes involved in autism I am still aware of why I’m fighting. I’m fighting for my son.

Its easy, when I get into heated debate mode, to start “letting people have it.” I’m a fairly witty guy with a knack for turning a quick phrase, and consequently I have the dubious gift of being able to make people feel inept or uneducated. However, when I start to go down that road I try to ask myself a few questions.

“Does attacking this person help my case or prove my point?”

“Is this person truly inept or did they make an honest mistake?”

And finally, the biggest question, “Will this confrontation help my son lead an independent life?”

If the answer to the last one is “yes” then I will fight until I am out of breath. However, if it turns out I’ve gotten carried away, I have to figure out how to go back to the table, classroom, restaurant, etc, and make things right. My son has enough challenges. He doesn’t need his confrontational dad to add to them. If I’m in crusader mode, it takes away the dad he needs.

One of the biggest challenges the adult autistic population faces is the lack of knowledge about the disorder. Since we, de facto, are tasked with educating the public at large it behooves us to view ourselves as teachers. Most good teachers do not build confrontation into their teaching style, so I strive to take it out of mine.

Its hard, for me, because I’m a passionate person. I love my son and I’m emotional about his success. However, when I get what my wife calls “the crazy eyes” I know its probably time for me to take a deep breath and calm down. Is it as emotionally satisfying as reading someone the riot act? No. Does it give me the easy adrenaline rush and cheap “win” associated with the most demagogic political debates? No. What it does do, hopefully, is the right thing: Teach people that autism is part of a person, not all of him.

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