ASD World

There is a fantastic article posted by the folks at Wrightslaw (www.wrightslaw.com) about Special Education and testing.

http://www.wrightslaw.com/info/test.issues.advo.matthew.htm

It’s written by Dr. Bill Matthew, Ph.D., NCSP, BCBA-D.

The main point of Dr. Matthew’s post is that special education should be empirically-driven (i.e. applied behavioral analysis) rather than “intuition and tarot cards”.

My two favorite quotes from the article are:

1.  “Discourage the use of grade & age equivalents — they’re also ordinal measures, terribly inaccurate, they promote inaccurate typological thinking and they’re grossly inaccurate for measuring growth. I know parents like ‘em, but they can lead to erroneous conceptions.”

In other words, don’t compare your ASD kid’s results with other kids of the same grade or age level.  It has little to do with your own child’s growth.  Remember the “I” in IEP; it stands for “Individualized”, not group.

2.  “We can train Shamu but we can’t train a kid to be compliant or read?? Give me a break!!”

In other words, we can train a giant killer whale to do all sorts of tricks for fish, but we can’t teach kids who have special needs (and a more developed brain for education) how to read a book?  Remember, Dr. Matthew was a school psychologist when he wrote this – one of the “bad guys” we assume.  Clearly, he isn’t a bad guy from a parent’s perspective.  He may be a bad guy from the school administrator’s perspective, but read his article and use it to your advantage when you are dealing with an obstinate school district.  You can even say, “Hey, this guy was one of your own, and even he thinks you’re wrong!”

We Connect Now – website to unite college students with disabilities. Great resource!

http://weconnectnow.wordpress.com/

OH MY LORD! Please, all of my Cherry Hill friends and all of my Autism Peeps, watch this video. I’m so disappointed in the school system (Cherry Hill School District) I grew up in and the very school my kids attended for a year (Horace Mann Elementary, Downs Farm) and, I believe, an aide/teacher that my son with Autism had (Jodi).

Please spread this as a lesson to how parents and children with special needs must fight back against intolerant and insane teachers and schools. Bravo Akian and Stuart!

http://www.youtube.com/watch?v=tfkscHt96R0

A you’re adorable
U you’re unbelievable
T you’re the teacher of my heart . . .
I you’re incredible
S you’re sensational
M you’re my only morning light . . .

for my Simon and for anyone who loves someone with Autism . . .

Two thoughts I want to get across today: (1) since ASD is a “hidden” disability, it is more difficult for people to comprehend; and (2) sometimes the biggest bullies are other parents.  Let’s see how these two concepts converge.

As parents / family / friends / caregivers / support / etc. of ASD kids, we have come to understand and accept that Autism Spectrum Disorders are “hidden” disabilities.  ASD people, especially kids, appear to be “normal” most of the time and high functioning ASD kids are typically very smart and do well in school.  There are some exceptions to this, notably Tourette’s Syndrome which may manifest itself by involuntary sounds, facial expressions, tics, etc.  Although there are those who won’t accept the “involuntary” part of this; they maintain it is just bad behavior allowed by bad parents.

Those of us in the ASD community know that the symptoms of ASD are neither voluntary nor caused by bad parenting.  Science has proven both of these precepts.

But we also must be tolerant of the reality that, from the outside looking in, it is difficult for many people to comprehend what ASD is and how it manifests itself.  Heck, as a parent, it took me a while to comprehend it about my own child and most of my extended family members still don’t comprehend it.  They choose to believe that this is a behavior issue, not a neurological condition where the brain is simply wired differently than ‘neuro-typical’ kids.

The unfortunate part of this is the ‘non-believers’ can turn this against the ASD kids and their parents.  Have you ever received those disapproving glances at the grocery store when your child was having a meltdown?  Have you ever heard those parents making derogatory comments under their breath when your child didn’t want to participate in a group activity?  Maybe some of you have even faced the brunt of someone’s verbal lashings like “if you disciplined your kid, this wouldn’t happen”?

Frankly, to me at least, this is bullying just as name-calling on the playground is bullying.  Those people think they are somehow better than you and that they have some unalienable right to criticize you about your child.  They don’t.  And parents should know better than bully others.  Sadly, some don’t.

This ignorance and intolerant attitude can also manifest itself in the school context.  These same parental bullies will fight schools trying to implement special services or special education needs programs; they will fight when the school budget is changed to account for these additional services; and they will show up at School Board meetings and try to bully the members into rejecting these services (which indirectly is bullying the parents of ASD and special needs kids).

That isn’t the worst part (although you’d think it would be).  The worst part comes from the old but accurate observation that children learn behaviors from their parents.  So when the parents bully other parents or their special needs kids, the children of those parental bullies become bullies themselves and mimic their behavior.  Bullies beget bullies.

I hope that we can learn to be a more tolerant society and accept differences.  Only when we accept everyone for their uniqueness will we move towards a better society where all kids can thrive.  One big step in that direction is to identify the parental bullies and gently persuade them that tolerance is much better than ignorance.

I’ve been trying to read as much as I can about the American Psychiatric Association’s (APsychA) proposed changes to the definition of Autism in DSMV.  As a father of an ASD kid (Aspergers/PDD-NOS) and a special education lawyer (SchoolKidsLawyer.com), what I have learned so far disturbs me greatly.

The Diagnostic and Statistical Manual of Mental Disorders (DSM) is a standardized classification of mental disorders used by health professionals in the U.S. (primarily) to diagnose and provide therapies. It is currently in its Fourth version (IV).  The APsychA has proposed version 5, aka DSMV.

They propose to change the definition of Autism and its diagnostic method to effectively exclude certain disorders which are currently considered on the “autism spectrum”.  Most of these disorders are in the high-functioning end of the spectrum, like Asperger’s Syndrome and PDD-NOS.  A recent study suggests that the new definition would exclude nearly 3/4 of those currently diagnosed on the higher end of the spectrum.  That is shocking.

An article in the New York Times from January 20, 2012 discussed the different viewpoints of the proposed changes.  Perhaps the most alarming statement came from Dr. David J. Kupfer, professor of psychiatry at the University of Pittsburgh and chairman of the task force making the revisions: “We have to make sure not everybody who is a little odd gets a diagnosis of autism or Asperger disorder. It involves a use of treatment resources. It becomes a cost issue.”  A little odd?  I find it odd that a professor of psychiatry, one who should be sensitized to the stigmas attached to Autism and the incumbent bullying that results in schools, would use an offensive word like “odd”.  Temple Grandin referred to herself in a much more reasonable way: different, but equal.

“It becomes a cost issue.”  Let’s ponder that phrase a bit.  Of course, it’s a cost issue, but to whom?  It’s been a cost issue to parents for decades.  Often, when the parents had to shoulder those costs and couldn’t manage it financially, the children suffered and ended up costing society more by being institutionalized or otherwise not productive members of society.  It was only when the government, schools and insurance companies started to share some of these costs did we see a vast improvement in the therapies and education for these kids and a correlating adaptation into adult life.  With the proposed changes, many kids who are helped by the services in school and wrap-around therapies would fall through the cracks and those costs would fall back onto the parents who know their children have Autism even if there is no diagnosis.  Of course, insurance companies would be very happy their claims numbers would go down.

An anonymous commentator was quoted in the New York Times article as saying, “Come on, 1 in 100 children today? This pathology did not exist in the past because we did not label it.” And the same could be said for peanut allergies – the incidence tripling in children between 1997 and 2008; Multiple Sclerosis; Alzheimers (PDF file); and many other medical issues.  Does the commentator doubt the accuracy of those diagnoses and the increased prevalence?  Would a physician want to put a child at risk by denying that the child had a peanut allergy?  What if that kid were their own?  Would they want to send their child to school with a peanut butter and jelly sandwich, only to risk the child dying because of it?  I doubt it highly and so therefore we shouldn’t risk the medical and societal effects of failing to properly diagnose Autism Spectrum Disorders.

Plus, the proposed changes do not accurately reflect medical or anecdotal evidence regarding Autism.  The U.S. Department of Health & Human Services recognizes the factors of Autism Spectrum Disorders, including the “range of symptoms, possible ‘red flags’, social skill issues, communication skill issues, and other indicators.”  So, now the APsychA wants to contest what our government already acknowledges?  And what many pediatricians see daily in their practice?  And what many parents and teachers experience first hand, with meltdowns, bullying, anxiety, panic attacks, and their after-effects such as failure in school?  And how does the APsychA intend to address the co-morbidities that often occur with ASD, such as depression, anxiety disorder, and suicidal thoughts? Should we just let these undiagnosed kids sink into potentially dangerous behaviors like cutting and suicide attempts?

The panel proposing these changes need to be told they are wrong, wrong, wrong on so many levels and they need to withdraw the proposed changes.  The panel includes:

• Catherine Lord, director of the Institute for Brain Development, a joint project of NewYork-Presbyterian Hospital, Weill Medical College of Cornell University, Columbia University Medical Center and the New York Center for Autism
• Dr. David J. Kupfer, professor of psychiatry at the University of Pittsburgh and chairman of the task force
• Among others

I have started a petition that I intend to present to the panel once we’ve reached at least 1,000 signatures.  The purpose of the petition is to bring, what I believe are overlooked, issues to light and the impact these proposed changes will have on parents, teachers, physicians, and society in general.  We can’t step backwards.  We can’t let this happen to our ASD kids, the ones who need us most.  We can’t ignore Autism; just because you don’t diagnose it as Autism, doesn’t mean that makes it go away.  We would feel the impact of this for years and costs would increase, not decrease.

Please read, sign and share the petition.  It is located at http://www.thepetitionsite.com/1/save-kids-with-asd/.  Thank you!

TJ Thurston

SchoolKidsLawyer.com

So you have an IEP meeting coming up and you are pondering whether or not to hire an advocate to help you.  An “advocate” is someone who acts on your and your child’s behalf and represents your interests in the meeting to assure that your child gets all of the services that he/she is entitled to.  Your advocate does not have to be a lawyer, but a lawyer is usually better trained in the law and advocacy methods than a layperson.

An advocate sounds great, but should you hire one? Here are 3 reasons why you should:

1.  Objectivity.  Obviously, the meeting is about your child and you are so stressed about getting the best for your child that you may lose the ability to be objective.  We all know (and probably have all experienced) that our emotions – no matter how well-meaning – can get the better of us and cause us to lose focus.  I’m sure you’ve heard the old adage “you catch more flies with sugar than with vinegar.”  So, you may get angry and start yelling at the very school personnel that your child will have to deal with on a daily basis.  Your yelling will probably be counter-productive to your child’s benefit.  Whereas, it is not the advocate’s child at the hearing.  Much like a lawyer representing a client, the advocate will zealously represent your child’s rights without losing the objectivity and training in how to keep his/her composure.  This alone will keep the school officials on their best behavior during the meeting because they will know that they can’t upset the advocate.

2.  Experience.  This reason is a combination of ‘been there, done that’ and knowledge of the IEP process.  You can read until you’re blue in the face about what to expect and what to accomplish at an IEP meeting, but probably you have only ever been in IEP meetings with your own child.  Thus, your experience is limited to the special needs of your child.  Just as we know that no two autistic or special needs kids are exactly alike, so also are no two IEP meetings and the needs of each child exactly alike.  An advocate has likely represented several children and knows that the approach to each meeting is unique and can prepare for such.  The advocate knows the tricks and games that some (not all) school officials play and the budgetary issues facing the schools and how those issues impact your child’s IEP.  There is no way you can match the knowledge and experience of an advocate simply because you are not involved in multiple IEP meetings with different children with different needs.

3.  The Law.  Again, you may have read up on the laws that affect your child or IEP meetings.  However, you may not know all of the laws or how they apply.  There is such a myriad of intertwining laws that it is easy to get confused or forget how those laws interact with each other.  You certainly don’t want to be at a disadvantage where the school officials know more about the law (and have been counseled by the school district’s lawyer) during the IEP meeting.  Have you read all of the latest cases by the courts in your jurisdiction about how certain issues are resolved?  Advocates are trained to know the laws of special education.  Thus, they are trained to know what schools can and can not do in IEP meetings.  They are also trained in how to prepare for the meeting and what issues are likely to come up.  Like a lawyer preparing for trial, an advocate prepares for the IEP meeting – not just with the facts about your child, which of course is important, but – with the laws that are likely to be in play and what the courts say about those laws.

Remember that you want the best for your child.  That is a given.  And using an advocate is probably best for your child.  If you need more than the 3 reasons stated above, contact me and I’ll give you about 7 more!

Maybe people have never even heard of “FERPA”, but if you are a parent of a school-aged child you should – especially if that child has special needs.

FERPA is the acronym for the Family Educational Rights and Privacy Act of 1974, 20 U.S.C. Sec. 1232g.  It is a federal law that assures both your and your childrens’ privacy rights as well as your rights to look at your childrens’ school records.  It also gives parents the rights to amend or destroy certain school records as well as control who sees those records other than the student and his/her parents.  Most states have similar laws, but even if they don’t this federal law applies to all 50 states.

Parents have a right to inspect and review all educational records relating to their child. Education records is defined as: “those records, files, documents, and other materials which (i) contain information directly related to a student; and (ii) are maintained by an educational agency or institution or by a person acting for such agency or institution.”  This includes the right to make copies and receive explanations and interpretations from school officials. Schools and related agencies have 45 days to comply with a request to inspect and review records.  Schools may charge a “reasonable fee” for the copies but only if such fee does not interfere with the right of access to the records.

If the school or agency denies proper access to the school records, it can be denied federal funding for the school.  Once the student turns 18 he/she obtains the right to access the educational records.  Also, there must be safeguards in place to assure that only the student or his/her parents have access to the information.  For example, if one parent has sole legal custody of a child, the other parent must obtain special permission (via the courts or the custodial parent) in order to access the records (but if there is joint legal custody, no special permission is required, but the parents may have to show a custody order to the school or agency).

There are many other details to this law and each case is different.  But the main point is that you have a right to see the records your child’s school maintains about your student.  This is particularly important if you have a special needs child and you believe the school is acting improperly towards your child, not providing the services he/she is entitled, or is disciplining the student inappropriately or passing that information on without proper authorization.

Give this some thought.  Have you reviewed your student’s school records lately?  You may want to make this a regular practice every 60 or 90 days.  REMEMBER: it is your (and your child’s) RIGHT!

Now, you know what FERPA is and that it is important!

To my knowledge, there are 2 main virtual (online) schools in the U.S.:

1.  Connections Academy www.connectionsacademy.com

2.  K12.com www.k12.com

They are members of (and watched over by) the International Association for K-12 Online Learning.

These schools offer free online school as an alternative to public school in certain states.  Each state is program-specific, so you have to check your local state department of education to find out which one is free in your state.

In Illinois, where we currently live, K12.com is the free option.  However, one drawback is that the students need to go to a brick and mortar school location once a week and we couldn’t do that in our house.  So we’ve opted for the Connections Academy (it’s called National Connections Academy because it is not the official state free option) and we must pay for it like private school.

Despite the economic hardship of paying for it, let me voice my opinion about it:  IT IS AWESOME!

As I discussed on this blog (and my others), we have a unique family situation.  My wife is bed-bound with Multiple Sclerosis and unable to provide transportation or other assistance with schooling.  My oldest son has Asperger’s Syndrome (and other comorbidities – see today’s companion post for this topic) and has not fared well in brick and mortar schools because of the social issues.  My younger son is neuro-typical, but I want him to attend the same schools as his older brother (and we can’t, frankly, manage attendance at two different schools).

So we needed a solution that would address all of our situations.  And Connections Academy was it.  It is completely online, so no class attendance required.  However, the students must have some contact with the teachers every 2 weeks – that can be in a “virtual” live classroom or it can be over the telephone.

But the best part of this experience is that it eliminates all of the negative social interaction in regular schools.  No bullying; no name calling; no ostracizing from groups; (and as we experience in public school here in Chicago) no fighting or cursing.  In many cases, the state is still obligated to provide social / special services, but we haven’t pursued that (frankly, because we haven’t needed it).

My ASD son is doing spectacularly through this program and so is his younger brother.  They were always good students, but the distractions and social issues in public school were hurting their performance and grades.

I highly recommend this if you have an ASD child.  It takes a bit of doing to make it work right, but it is worth all of the efforts!

Most people diagnosed somewhere on the autism spectrum also have comorbid diagnoses.  The comorbidity may be the cause of the problems you are currently facing, especially with an ASD child.

What is “comorbidity”?  If your doctors haven’t discussed this with you, shame on them.  Comorbidty means another diagnosis affecting your child that goes hand-in-hand with the primary diagnosis of autism spectrum disorder.  For example, common comorbid diagnoses include depression, anxiety, obsessive compulsive disorder (OCD), attention deficity disorder (ADD), and others.  These comorbid diagnoses can increasingly worsen if the ASD person is not treated for the ASD or the other diagnoses.

I will share with you my own experience.  As I’ve said many times on this blog, my son (now 12) has Asperger’s Syndrome, a high-functioning autism diagnosis.  He was also diagnosed with anxiety disorder and mild OCD.  We sought out every treatment and therapy in the book, sometimes struggling with insurance and availability of treatments.  We have also experienced a very high level of denial by the school systems, not believing that he has a medical diagnosis that explains his behaviors in school.

We resolved the school issue (which I will post about shortly).  But couldn’t seem to decrease his symptoms of the comorbid diagnoses.  This led to him having suicidal thoughts and admitting to depression.  (This is a very common path for ASD kids – inadequate treatment of the diagnoses can lead to depression.)  I also worried about him trying to cut himself, as he has come close to that.

BUT, during one of our recent visits to the doctor, we discussed the depression and bad thoughts and the doctor prescribed an anti-depressant.  My son doesn’t like pills, so we got it in a liquid form flavored by the pharmacist.

The result has been almost miraculous.  He is happier; no longer has suicidal thoughts; more focused on his school work; better interactions with his brother; and seeks out more social interaction with me and his mom.  He loves hugs and wants them all the time now.  Many of his Asperger’s symptoms have also lessened.

Now, I’m not suggesting that your child may have the same result we did.  What I am suggesting is not to give up on addressing the comorbid diagnoses.  Maybe, like us, if you can find the right help for the comorbidity, other aspects of your ASD child’s life will also improve.

It has made life in our house SO much better.  I hope this helps with your family and home!