Painful Failure of the Special Education System

The following is a speech given to a local autism support group. The speech is from the parents of a young adult who was diagnosed as being on the autistic spectrum in his late 20s, after his time in school had passed, and as discussed below well too late to prevent tragic consequences. I publish this with the permission of the parents of this young adult with the hope that their pain may spare others the same tragedy. There are many lessons to be learned from this story: keep a close eye on your student's use of the internet, social development is often more important than academic, transition planning for self-sufficient and safe outcome can not be emphasized enough, and sex education that is meaningful for students with special needs is even more important than for other students.

Northwest Suburban Autism Society  - April 1, 2008
    First of all we want to thank Kym for all the support she has been to us since we shared with her our situation. 

    Our son, A, is 30 years old.  Our other children are neurotypical.  A was diagnosed in 2006 and 2007 by top Autism specialist doctors in our area. His diagnosis is High Functioning Autism.  The wrist band I wear asks ‘Autism – would you know if you saw it?’  No medical professional saw it in A until 2006.  We wish they had.

    Our son, A, is going to a federal prison in May.  The sentence is 37 months for possession of child pornography - pictures from the internet.  A is labeled a sexual predator – the only label for a sex offender in our state.  He has to register as a sex offender for the rest of his life and follow all the restrictions on where he can live and work.  His offense is public record on the sex offender website on the internet.  Child pornography is a horrendous, embarrassing and shameful subject.  37 countries in the world have no laws against child pornography.  It is very easily obtainable on the internet.

    It was 6 am on that Thursday morning in 2005 when our doorbell started ringing furiously and we heard frantic knocking on our front door.  I ran downstairs thinking something happened with our elderly next door neighbor.  I opened the door to see 12 officers rushing into the house and up the stairs to the bedrooms with their guns drawn.  It was a team of FBI agents, state police, county sheriff’s police and our local police.  They shoved a search warrant in my face – like I’m supposed to be able to read with what I just witnessed.
They separated us and questioned us.  They interrogated A with 2 or 3 officers on him yelling  “You’re not answering fast enough.  You must be hiding something”.  A was shaking like he had Parkinson’s.  They had him sign his Miranda rights.  They asked him leading questions.  They told him to write a statement which they started writing for him and told him what to write.  None of this is illegal.  He was not under arrest and since he was in his own house there are no laws to protect him.  We could not think to say we wanted to call a lawyer.  They thought he was some criminal mastermind that was taking these pictures and they took pictures of every wall in our house to match against the backgrounds of the pictures that had from A’s computer. After 3 hours they left.

    A year and 1/2 later A was charged with 3 counts of possession and one count of distribution.   The prosecution acknowledged the doctor’s diagnosis and even said himself that after spending 10 minutes with A you could tell he had a problem.  There were several avenues we could have pursued but not with a good outcome. If we had pursued A being declared incompetent the court could have kept him locked up in an institution until he was declared competent.  97% of federal cases reach a conviction.

    The prosecution eventually offered a plea bargain of at least 60 months of prison time in exchange for their dropping the distribution charge.  It was the most painful decision of our lives, but we chose to accept.  If we went to trial A would have been evaluated by the government’s psychiatrist who did not have to know anything about Autism and would perform tests on A that would not be normed for Autism.  They wanted him to be available for 3 days of testing. 

    At the sentencing hearing the judge decided not to accept the plea bargain which in his opinion was too harsh in this case.  We then pled guilty to the possession charges which is a general intent crime.   The prosecution pushed for a jury trial on the distribution count, but the judge urged the prosecution to drop the charge as he said no educated jury would convict A beyond a reasonable doubt due to it being a specific intent crime.  A did not have the wherewithal to commit a specific intent crime.  The prosecution finally dropped the distribution count.  Each count of possession has a maximum sentence of 10 years in prison and a maximum $250,000 retribution fine.  Although the plea agreement was for at least 60 months of prison time the prosecution was pushing for 97 to 121 months in prison.

    At the sentencing hearing the judge repeated what the doctor said in his report that the real tragedy is that A was not diagnosed much earlier.  If he was diagnosed sooner he could have received the education and training to have made better decisions.  We would have been aware of his vulnerabilities and could have taken precautions we did not know we needed to do.  Since your child is diagnosed with ASD the courts may not be as lenient as they were with A.

    A was diagnosed with speech delay when he was 4 and learning disabilities when he was 5.  He was evaluated by a clinical psychologist when he was 7 and then by school psychologists during grade school and high school.  He had an IEP every year.  The school system never took a fresh look at A’s problems.  Maybe they were not educated on High Functioning Autism which was added to the DSM in 1994 when A was in high school.  A had seen a psychologist for many years during grade school and high school, who did not keep up with new developments and told us recently that he did not know about High Functioning Autism or Aspergers until after A’s therapy stopped.  The possibility of A being on the Autism Spectrum was brought to our attention when we were trying to understand why our son could have been involved in this. 
A had the same small set of friends from kindergarten through high school.  After high school most of these neurotypical friends went away to college or just stopped interacting with him.   He was often on the computer and late at night when his ‘old’ real friends had long turned off their computers he would look for someone, anyone to talk with him.  Because of his speech delay he found it difficult to make friends in person.  But on the internet in chat rooms and with instant messages, he could ‘talk’ with his internet ‘friends’ and they couldn’t hear his speech problem.  He was just like anyone else.

    In some ways A is just like everyone else.  He has the same feelings and curiosities and hormones.  He was curious about adult pornography which is completely legal and he traded adult pornography pictures much like adolescent boys would trade girlie magazines.  The problem is that there are evil people on the internet. They do very bad things.  They sent him illegal pictures and he saved them on his computer for when other evil people would ask him to send them this type of picture.  A did whatever he could to keep his internet “friends” engaged on the internet and to keep the chat going.  A will spend 37 months in prison for possession of pictures.  He had no physical contact with anyone but will have to live with a horrendous label, which affects him and his family for the rest of all of our lives.

    We could have kept this private.  Many people do.  But if we can save one person, one family from having to go through what we have gone through and continue to deal with then it’s worth it.  If by our talking with you we can bring an awareness of what can happen and prevent your young adult from any situation with the criminal justice system then it’s worth it.  We have personally seen how the criminal justice system works in this country.  There is no sympathy for people with a disability.

    We had never imagined that this could happen, but as cited in the Dennis Debbaudt’s Book “Autism, Advocates, and Law Enforcement Professionals” persons with autism are guilty of making bad friends and may compound their mistakes by the actions they take in keeping them.

    The following is quoted from his book.  “These incidents are living hell for persons with autism and the worst nightmares for parents, advocates, and those who care.  Lack of credibility as a witness or reporter of facts will often leave the person with autism in the unenviable position of being victimized twice: once by the abuser and again by a system that lacks the ability or the resolve to understand him or her.  For those who are victimized, there can be lifelong traumatic effects.”

    People with Autism are 7 times more likely than the neurotypical population to have an encounter with the police.  Some police departments are providing training for their staff on how to handle situations involving people on the Spectrum.  Your adult child should carry a card stating they have Autism and give the card to any first responder in any situation. Without an understanding of the disability, the investigator may easily misinterpret the information provided as an indicator of guilt or behavior may seem indicative of a person with something to hide.

    A large number of people in prison have a mental illness or disability.  Some prisons are privately owned and need to show profit for the shareholders. The United States has the highest documented incarceration rate and total documented prison population in the world.  As of 2006, a record 7 million people were behind bars, on probation or on parole.  More than 1 in 100 American adults were incarcerated at the start of 2008.  $49 billion was spent, more than on higher education.

    We thank you for your listening to us this evening and we hope we have provided you with some valuable information.

Comments

[Liz Ditz]

Charles, what a heartbreaking story. Please extend my gratitude and sympathy to A.'s parents.

I have broadcast this post to all I know in the [rational] autism network.

[karenrz]

I feel for these parents, since he would have not been diagnosed in the last two decades before the dx criteria was expanded.

But, this child was high-functioning and I want to know: Didn't the parents have a clue as to what their son was up to? How could they have missed the signs? Didn't the parents speak to their son about sex and appropriate behavior - did they really leave it up to the school to educate their child in this?

All parents need to teach their children right from wrong. The ball got dropped, and now he has to pay unfortunately.

[Danielle D.]

This was a truly heartbreaking story to read.
One thing that concerned me was that the parents felt that if A. was diagnosed earlier he could have gotten the training that he needed to make better decisions. The prosecution even said himself that after ten minutes with A. you could tell that he had a problem. If the problem is noticed by a stranger in ten minutes, wouldn't the school's educators see the problem and gave him some sort of training on decision making? I truly feel that this should have been added on to his IEP.
What I feel is also important to remember in this situation is that this could happen to anyone, not just someone on the Autism Spectrum. The internet can be a scary place, and is used by almost all students in and out of classrooms. I feel that smart internet training should be provided to all students in and out of special education. With everything going on the internet these days, it definitely would not hurt to teach students good decision making techniques, and prevent this type of situation from happening in the future.

[Sue Keller]

Thanks to these parents for having the courage to share this tragedy. Before we criticize the parents, we would do well to remember that even special ed. legal advocates have said pick your battles with the school system. The special ed. system is adversarial against the child and family, trying to provide only as minimal services as possible. As parents we try to do the best for our kids and become experts in all facets of their disability and in special ed. law, but those 2 things together would constitute a full-time job. Many of us have to work outside the home, also. Some of us can't work outside the home because there is no appropriate child care available for our child, thanks to that big ADA loophole: "reasonable accomodations". My point is we're all doing the best we can. Truly these parents did all of us a service, by letting us know what could happen if we remain ignorant about the problems of lonely adults with disabilities. In addition to teaching our kids the dangers of the Internet, we also need to provide opportunities to socialize in person for our teens and adults with disabilities. Encouraging our kids to have friendships and later, dating relationships, would go a long way to make our kids less vulnerable to abuse.

[Sherry Hollis]

Danielle wrote - If the problem is noticed by a stranger in ten minutes, wouldn't the school's educators see the problem and gave him some sort of training on decision making? I truly feel that this should have been added on to his IEP.

Schools see alright. They just don't want to do a thing to help children. Lots of people question why schools seem to 'not notice'?
They notice, alright. They also notice that they will NEVER get reprimanded or have to pay the price for hurting children.

THIS is why they do it.

[Sue Keller]

The Baltimore Examiner printed a story today re a 31 year old man with a disability charged with possession of child pornography.

Here's the link -http://www.baltimoreexaminer.com/local/Disabled_man_sentenced_to_home_detention_in_child_porn_case.html

The defendant is described as "borderline mentally retarded and uses a wheelchair" The defense attorney said the defendant is "computer illiterate". The defendant's family had "bought the computer at the recommendation of a psychiatrist who thought it would help him stay in contact with friends and alleviate his depression."
Because of the extent of his physical disabilities, this defendant is on home detention.

Clearly, the need to teach our children with disabilities about how to use the Internet responsibly is incumbent on us. The need for real-time supervision may also be required as well as blocking software. A few years ago in either Time or Newsweek, a father of 2 teenage sons (without disabilities) had to take the keyboards from the home computers with him when he left the house because of the sons' constant viewing of porn sites. (This must have been before the Internet was accessible from cellphones,etc.) Some kids are even more bold - I know someone whose teenage child (again, w/out a disability)would try to view porn sites even when the father was supervising Internet use in person. If he stepped out of the room to use the bathroom or for some other reason, no matter how briefly, this child was on porn sites.

So, what's the answer? A tour of the local jail? Having local police give talks at our kids' schools or rec. centers? Maybe. I wish I knew.

[GR]

As the parent and grandparent of persons with ASD, and also the parent of a Special Ed. teacher, I am disturbed by the attack on teachers and schools. Like every profession, there are great teachers and bad teachers. It is the responsibility of the parents to monitor their child's activities and Internet use, and also to go to the IEP meetings prepared and ready to fight for what is needed for their child. As a former School Board member, I know that schools have difficulty in providing all programs and resources that are adequate for the miriad of learning disabilities that a present today. As the article states, more is spent on prisons than on higher education. So why don't people get the legislatures and state officials to wake up and provide funding for the education that the law and moral principles demand?

[AS]

While schools have the responsibility to accurately identify and assess disabilities for the purpose of educational and postsecondary planning, I find it hard to understand how education in moral and legal behavior is the responsibility of the schools rather than the parent.

No school should be the primary educator for anyone's moral decision making.

[Internship]

Oh! that really is a true grievous story.I would also like to extend my gratitude towards A's parents.There is actually a need for superintendence towards our children and one's who do not really wish to care initially, have got much to learn from this post.

[Cyn]

This story saddened me. While we have surrounded our own son with professionals along the way; his public school continously denied problems. It was not until he was at a therapeutic day school for the first month, that ASD was brought up and he was diagnosed. Yes, the public school closed its eyes where others were clearly open.

Sad indeed and yet we are grateful to others who have no political agenda.

[DJ's Mom]

OMG...this story truly hits home. I am struggling with my son's school to help me educate my son in sex education: sexual safety, recognize abuse and unplanned pregnancy, etc. This story is my biggest fear that my son will end up prison because of my failure and the school's failure to properly educate him. I am doing all of the suggest things on my part and it is just hard working with a school district that just drags their heals. Time is not on my son and I side, as he is aging out of the school system in Aug. 2009. I am however determined and will not give up. I even sought the assistance of a personal psychologist, trying to work with school's psychologist and my son’s residential psychologist. I am trying to stay positive but the more time goes by that the less I feel optimistic.

[lcs]

Remember that the autism diagnosis is subjective, and aspergers or high functioning autism is very, very subjective. There is no medical test that will identify this syndrome; the syndrome is diagnosed by noting a collection of traits. Further, special education services are driven by deficit areas exhibited by the student, not by the diagnosis. Finally, MOST AUTISTIC PERSONS DO NOT ENGAGE IN PORNOGRAPHIC ACTIVITIES; CONSEQUENTLY, SCHOOLS TYPICALLY DO NOT ADDRESS THE NEED TO AVOID PORNOGRAPHIC ACTIVITY WITH AUTISTIC STUDENTS. Why would anyone think that had this child been identified as having asperger's syndrome, the school would then have known that he should be taught not to view pornography? Think about it.

[Praxis II test]

This appearance miserable me. While we take it surrounded our corner juvenile with professionals along the way; his unmistakable develop continously denied problems. It was not until he was at a therapeutic moment drill since the top month, that ASD was brought flowering further
he was diagnosed. Yes, the pronounced advise closed its sight whereabouts
others were distinctly open.

[Praxis II test]

This appearance miserable me. While we take it surrounded our corner juvenile with professionals along the way; his unmistakable develop continously denied problems. It was not until he was at a therapeutic moment drill since the top month, that ASD was brought flowering further
he was diagnosed. Yes, the pronounced advise closed its sight whereabouts
others were distinctly open.

[Mom]

I can sympathize. I too have a son, now 26, who is a felon. He is so trusting and so concrete that he couldn't see that what he was doing was illegal. His name is found under "hackers" on the internet. He has never been diagnosed but has siblings that have been...and everyone agrees dad has aspergers also. Luckily he got instead a $10,000 fine and 5 years parole...but only because they wanted to hire him to use his skills to catch others. I knew he was different from the time he was little and by the time he was 16 he was in college ...but never made it through.

[special ed fred]

I'm saddened by this story on many accounts. I feel sorry that these parents feel the need to assign blame to themselves, to the school, and to society in general. Why is their son relieved from responsibility for his actions? High functioning people with Aspergers can know right from wrong. An even bigger implication of the story is that public education should take on the responsibility of making sure every special ed child never goes to jail? Is special education supposed to ensure the economic and social success of every student later in life? When does personal responsibility begin?

[dwb]

Thank you for sharing this story. This story grabbed my attention because it read exactly like my son's story. My son was a good child who everyone loved and now he sits in prison for a computer child pornography charge. He has been diagnosed with high-functioning autism. Did we know what he was doing on the computer? No, he was good at hiding it just like boys who look at Playboys find ways to hide their material. I think he was embarrassed to let us know he didn't understand. He talks to us about everything now to help us understand his confusion. He is very good with computers and hid the material. Our son needs help and we know that now. The prison system has given him no help or treatment. We were clueless and maybe blind, but our eyes are open now. Our son is up for parole now and we are only concerned with seeking help for him. I don't know if we can put his life back on track, but we are going to do everything we can to try. My heart goes out to these parents as I feel the same way they do. Why didn't the school or someone point this out to us? Why didn't we know? High-functioning autism and Asperger's is hard to see in a person and often excused for just quirky behavior. We know different now. Thanks for sharing this article. It helps me to know we aren't alone.

[my kids my responsibility]

When a student graduates high school - they have spent 10% of their lives in school. How is the school supposed to be responsible for this and all other tragedies??? All you have to do is watch the news to see the advice given over and over how children should not have access to computers in their rooms or other areas where parent's cannot monitor them. I sympathize with the parents- however this is not a school issue. Districts cannot school and "hometrain" parents responsibilities away.

[lisa]

I need to talk to these people. My son is autistic and I am living this nightmare right now. My son has been charged for the same crime. Is there any chance of passing on my contact info?

[Teacher in Illinois]

Schools were design to impart information, period. Teacher training (costing $75,000 or more) involves learning to deliver information in whatever way possible for each student to learn and assess (knowledge, understanding, application, analyzing, etc…) in a way that they are able. Teacher training also includes learning to teach the curriculum AS DESIGNATED by their SCHOOL BOARD and their STATE STANDARDS. Special Education bashing is the new sport designed by politicians to control teacher pay and encourages parents to lay blame on someone else for their child’s lack of progress regardless of aptitudes (which are real). Negativity is never the solution to the problem. No wonder teachers leave in droves.
The only thing that matters is the child’s present level of performance in each domain and the interventions to get them to the next step. Interventions are based on what has worked in the past or new best practices and are made with a team approach-including the parents and student. Your yearly input is all that matters-don’t come back 10 years later and say not enough was done! There is no guarantee that any student will act, perform, or succeed and there cannot be due to other influences from the 17 hours of their day, when they are not in school -like diet, tv, and yes, poor parenting-. It is the parent’s responsibility to monitor their children to see if what they learned in school generalized into the home and community. And finally, no school program can cure your child’s disability. They will be adults with the same disability that they had in school, and leaving them in front of a computer or tv causes regression in all that they learned. They should be out volunteering if they are not working- supervised so that no harm comes to others because of their lack of ability to remember or practice what they learned.

[Charlie Fox]

I am so discouraged by your comment. You say negativity is never the solution but that is the thrust of your comment. I invite you to read the following story that reveals that too few schools teach cyber safety.
http://www.eschoolnews.com/2010/02/26/study-too-few-schools-are-teaching-cyber-safety/
Let's start teaching for the 21st century and stop the unproductive complaining. That is the answer not the defeatism, as expressed in this comment.

[Teacher in Illinois]

If cyber safety is in the school standards and our curriculum, we'll teach it. Why are you blaming "Special Education" and encouraging detain towards those of us who dedicated our lives and a small fortune to educate children with disabilities? You used such a disparaging title and I'm discouraging? "Painful failure of Special Education"? Your complaint should be with the state learning standards and their inability to keep up with the 21st century, not the Special Education Community.

[Charlie Fox]

I do not mean to quarrel and I have no problem with special educators every where who are incredibly dedicated and they have my life-long respect and admiration, but this last comment ignores the fact that we write and instruct special education students in reference to their IEP goals. If cyber safety is a goal then we should teach to it.

(I meant no disrespect by the title to this blog.)

[Teacher in Illinois]

And was it in the above child's IEP in the 90's? Of course we teach what's in the IEP.

Hind sight is 20 20, so do we slam dunk the "Special Education System" for something that happened that wasn't known to be an issue in the 1990's when A was in school.

It would have been better to title this A Lesson in History and Let's Solve This so It Never Happens Again.

Interesting you challenge me and let "Posted by: Sherry Hollis"'s hatred remarks stand for others to set straight.

But, Sensationalism makes blogs popular; and Due Process is a money maker.

I'm off to find one that really wants to get parents and teachers to be collaborative and benefit students.

[Charlie Fox]

Sorry to lose you as a reader and to end what I considered to be civil dialogue between two professionals. BTW I take very few cases to due process and it is not about the money!