The State vs Autism Families


A series of disturbing news stories paints a grim picture of the State’s intervention in the families of individuals with autism.

Perhaps the most harrowing case emerged from The Detroit Free Press, who recently published a six-part investigation into the Wendrow family, who have a teen daughter with severe autism and a son with Asperger’s Syndrome. The parents pressed for their daughter’s school to use facilitated communication (FC), a highly controversial technique in which a facilitator aids an individual in typing their thoughts. When the Wendrow’s daughter assisted keyboarding began spelling out allegations of sexual abuse committed by her father and brother, a nightmare of epic proportions began in which the parents spent time in jail and their children were placed in separate juvenile homes and kept apart from their parents for 106 days.

Authorities acted upon an assumption of guilt even when a sexual assault test found no proof and a prosecution witness insisted their was no abuse. For her part, the aide refused to believe she was influencing the daughter’s typing, even though the child was clearly not capable of the complex language being attributed to her. The judge who finally dismissed the case described it as “a runaway train."

In another case out of Canada, Derek Hoare briefly lost sight of his nine-year-old daughter who was playing in their backyard which is surrounded by a six-foot fence. He immediately called police and a frantic search found her safe and sound over at the neighbor’s pool. 

Happy ending, right? Not exactly.

Four days later, Hoare’s daughter was removed from his home by authorities, who maintained they were lightening the load of the single father of three. The daughter is being held in a psychiatric facility and can’t even see her father until a hearing determines his rights.

London brings us the story of a judge finally ruling that a 21-year-old man with autism had been unlawfully detained and his human rights breached when a center that his father brought him to for brief respite care refused to release him after the agreed upon two-week period. The center was concerned about the way the son acted while there and committed him to a “positive behavior unit." It took a year for his devoted adoptive father to win his release.

Once a child is taken away from the home, the process for achieving his or her return is horribly long, which makes it all-the-more important to take utmost care in making initial decisions. Obviously, any child summarily torn from their family is going to be traumatized, but for the child with autism, the trauma expands exponentially. Given the condition of psychiatric units, residential centers and foster homes, these stories are even scarier. Loss of custody means loss of parental choices over treatment. In foreign environments, children are subjected to drugs and other actions the parent would never consent to.

Clearly in the Wendrow case, the starting point should’ve been a closer examination of FC. In the story of single father Derek Hoare, in-home support and a tracking bracelet would’ve been in order. And for the poor dad who lost his adult son, the son was obviously acting differently in the center than he would at home and in-home respite care would’ve been the answer. 

The flip-side of these stories are the tragic tales of lack of intervention as in the case in which a woman strangled her son with autism, or the beleaguered mother of a child with both cancer and autism who withheld chemotherapy from him. Surely, a mother escaping a battering husband living with her son with autism in a motel room is the epitome of a red flag scenario, as is the single mother enduring caring for her critically ill child at home with no help and support.

I worry about the power of the State over autism families because of the zeal in which they pursue dubious cases and the increasing number of tragic outcomes from families that fall through the cracks.

23 Responses to The State vs Autism Families

  1. Meredith says:

    I have an autistic son, and I have been hounded by CPS “investigators” who constantly mistook my son’s symptoms as neglect on my part. They first came when I was packing to move. I refused entry, which was my Constitutional right. I was then harassed by two social workers and four cops for at least 40 minutes. I explained several times early on that opening the door makes my son very upset, because he thinks it means we’re going somewhere, and that he was about to get very upset if they didn’t honor our rights and leave. Sure enough, before too long he became very agitated and started throwing around all the stuff I’d been packing. By the time I let them in, making sure to say it was under duress, they wanted to take him away because the house was a mess! I believe most people would sympathize and not hold that against me. I even had an official school document that I showed them on that very first day, that clearly stated that he “destroys his classroom every day”. Many parents of autistic kids are familiar with the kind of destruction that can happen with an “autistic meltdown”…but they weren’t. The social workers wanted him in a foster home because of how he was behaving in the meltdown…the cops wanted to institutionalize him.

    The supervisor overruled them all and he stayed with me, thank God. I was then badgered repeatedly from July through November. I canceled my move so things would not be in disarray. But they repeatedly tried to construe my son’s normal autistic behaviors as neglect on my part. It was insane. I kept telling them to look it up and they’d see I was right, but that I was NOT going to do their job for them. I have a tape of them, several weeks into the investigation, admitting that they still hadn’t bothered researching the issues.

    I want everyone to think about it for a minute. What if complete strangers with the power to take your children, made judgments about your parenting and the safety of your home without even knowing about your child’s disability? It’s a terrible feeling, especially since I knew that if my son were taken he’d be with people who didn’t understand him at all.

    My son was already having a regression due to the schedule change after school ended. He had lost many of his skills, including toileting on his own. He was also self-mutilating. I took him to the hospital four times and his doctor’s office three times…NONE of these medical professionals had any problems with the care I was giving my son, and several actually commented on how well I was doing with him. I’d needed to focus my attention on these needs, but CPS seemed to ignore the obvious and focus on the ridiculous. One of the most infuriating moments was when CPS “dropped in” while I was folding and putting away laundry. I’d also spread out some jeans on the floor because I’d wanted to see what would fit for next season…I hardly think this is a crime. I was criticized for having laundry out. I was also criticized for having dirty dishes in my sink. While she criticized me, my son was self-mutilating right in front of her eyes. What kind of person would expect a mother to focus on the dishes when her child is ripping off his skin?! Those are not an immediate danger and can wait until the child is in bed! There was no common sense displayed during this investigation.

    The whole ordeal was very upsetting for us. They took a bad summer and made it immeasurably worse. My daughter is still scarred and repeatedly asks me to buy a house with a secret room so she can “hide from CPS”. She also tells me that she is so sorry that they yelled at me (she was there when they yelled at me). I believe that more details of my story will be in a future issue of Rise magazine. Many other parents of autistic kids are suddenly finding themselves under the scrutiny of the state. This has got to stop.

  2. Meredith says:

    Oh…they realized the first day that the initial complaint was wrong. The report wasn’t even alleged child maltreatment, it was a report of a home repair! The floor in my master bathroom had issues…my landlady wanted me to pay for it and she had her handymen say it was my fault. I’ve talked to other experts who say that they lied. I said that I was going to seek other expert opinions about the floor, and CPS was called in retaliation.

    Homes have problems. It happens to every home. Most adults are capable of handling this and keeping their kids safe. Otherwise we’d send CPS into the homes of anyone who had a household project. A problem with the master bathroom is not an immediate danger to children and the reporter knew this. He also knew I was keeping the room locked. CPS realized right away but instead started focusing on my son’s behavior.

    Also, they said during the very first visit that I had a great support system and that I’m great with my kids. It all makes me so angry that our home was violated. I’m looking into suing.

  3. tammy says:

    i went through something very simular to you meredith a few years ago. i will never forget thst helpless feeling i felt. these people have so much power and make so many life altering decisions based on pure ignorance!!! ripping a child with autism out of their home is way more damaging to them! but these people will not hesitate to do it because they think they know everything!! i had my home criticized as well coincidently it was during the summer as well, my son was having a tough summer that year. the investigator was horrified that he liked to stand on the kitchen table, in the windows, and sut between the fridge and oven.. he found those areas comforting!!! i would let him do it as long as he was safe which he was. all the investigator saw though was that it was odd and dangerous behavior. i asked her to look up autism and sensory issues and she would find that behaviors like that were normal for children with autism and they fullfilled some of my sons sensory needs! the investigator never bothered to look into it.. did i mention that the investigator was also very young, fresh out of college, has no kids, we were one of her first cases ever AND she knew nothing about autism!!

  4. Meredith says:

    Many of the horror stories I’ve heard about CPS occur at the hands of young, inexperienced and idealistic caseworkers. They believe they have the answer for everything, but so often their answers don’t fit into lives other than their own. My caseworkers were both very young and childless. Well, the first one was very pregnant and gave birth within a few months. (One of the few times I got upset was when I was notified that my case was being transferred to a new person, when the original had led me to believe that she’d close my case before she went on maternity leave. Yeah, I got angry at the thought of our misery being prolonged!) I repeatedly wonder if that first caseworker always does all her dishes right away, now that she actually has a child to watch!

    I understand what you mean with your son. I’ve also had to do similar things with my son. He really likes being on the counters…there’s very little risk of him falling so I often let him do it to comfort himself. Sometimes we have to choose our battles.

    CPS’ main beef with me was that I locked my son in his room at night to prevent wandering. I made the mistake of casually mentioning this during that first day, ironically in an attempt to explain the things I do to keep him safe. Nighttime wandering is potentially dangerous and this is the method that works best for us. It’s also recommended by many autism experts. Many other parents are having to do the same thing. I repeatedly told them to research it but they refused for months. Finally, when the second caseworker finally got around to it, she said she “didn’t care” what the autism experts said. Because a recent college graduate with no parenting experience at all, let alone with autistic children, would no better? It was terrible. I was the expert, but she treated me like I knew nothing and was a constant danger to my children, and that she knew everything. No other system was better. It’s the least distressing option for him as well, because it sends an obvious signal that it’s time to stay in bed. He’s become much less distressed at bedtime since I started that. They were worried about fire. Yes, that is a risk, but it’s a small one. Wandering is much more likely. It’s dumb to plan for a less likely risk instead of a more likely risk!

    I know a mother in CA who lost her kids because she locked her autistic son’s bedroom door, and because there were tiny scratches on her daughter’s face from her son. She was right to lock the door. And the scratches were very minor and just a case of a minor sibling spat…nothing out of the ordinary at all. She lost those kids in August, and then they took her newborn from her straight from the hospital. She has had over a dozen EXPERT witnesses testify that she’s a wonderful mother. CPS had one witness, and it was just the girlfriend of the oldest son’s father…but the judge ruled in favor of CPS. It was terrible. The baby is growing up barely knowing her. The older two children get hysterical whenever her supervised visits are over. It’s obvious to anyone with a brain that these children want their mom and feel safe with her, and that they’re being traumatized by the separation. CPS says they’re “just tired” after every visit. It’s infuriating.

    They seem to think that parents have to remove all potential sources of harm. That’s just not how the real world works. As parents, we remove the dangers that we can. However, some dangers can’t be removed and then our job becomes to supervise and protect our kids the best way we can. Parents are allowed to make potentially risky decisions for their children. We’re supposed to be presumed fit unless a court proves otherwise, but these people were literally trying to run my household anyway.

    I highly suggest nccpr.org for anyone interested in how the child “welfare” system really works. That site has weeks worth of reading and is very thorough. People need to learn about how the system really works, like the lack of meaningful due process and the fact that people in the system generally aren’t who they think they are.

  5. Susan says:

    I really empathize with all this. The frightening thing is the total immunity CPS has. They can say or do anything without fear of consequences.

    -SM

  6. Meredith says:

    They don’t have total immunity, but it’s extremely hard to sue them. It needs to be easier. If they do terrible things (hide exculpatory evidence, violate due process, etc) they should be legally accountable for the harm they’ve inflicted.

    Unfortunately, it’s hard to sue them. In addition to all the legal protections they have, it is hard to find attorneys who will take on this government agency. The result is that families are left scarred with no way to seek justice, and the agencies continue doing whatever the hell they want without meaningful checks and balances.

  7. Susan says:

    Social workers can fabricate and distort evidence without it being illegal. CPS drags out cases against them forever, trying to make the person give up.

  8. Lisa says:

    this is a subject close to my heart. I have introduced my son to the local cops so that they will recognized him. He won’t wear a wrist monitor or a gps. A necklace with his name and address didn’t work. I lock all doors constantly. I worry at school about his wondering. What laws do we have to protect ourselves

  9. Susan says:

    Excellent question!

  10. Sometimes, it is not just the young, inexperienced caseworkers who contribute to incidents of ignorance, but also the seasoned social-workers who have witnessed true cases of abuse against children, but are also placed alongside loving families of children with disabilities and unable to reconcile the fact that the situation is distinct. While diversity is more widely embraced by society, legislation to protect basic human rights for individuals with disability is largely archaic or lacking altogether. Where it does exist, adherence and enforcement is problematic. In our case, my daughter, born with a rare medical diagnosis and with Autistic tendencies – we were informed by Ministry Representatives – could not have access to government funding for required medical and therapeutic supports unless she resided outside of the family home under Ministry direction. This expectation that a child cannot be raised at home has been a plague on families for years… first through institutionalized care and now within foster care placements. It is absolutely ironic that families are alienated and more monies be attibuted to out of home care rather than in support of the natural home. It is both unethical and financially draining public funds. Following the death of my daughter, an Amendment in legislation was established to counteract the oppressive stance previously held: “The Family Support for Children with Disabilities Program to have separate legislation from that of child protection services.”

    http://www.child.alberta.ca/home/527.cfm

    Alberta FSCD (Family Support for Children with Disabilities) Act, Section 2-3, Manual Amendments: Policy and Procedures in Family Centred Supports and Services retroactive December 2006. In loving memory of Samantha Martin, June 4, 1993 – December 3, 2006.

    A petition exists in which formal title will be requested from the Court to attribute the title, “SAMANTHA’S LAW”, for the life and death of the child amendment stems from.

    http://www.petitiononlinecanada.com/petition/samanthas-law/67

  11. Veronica says:

    I feel for all those families out there who have a child with autism. I too have a son with autism. He is 15 years old now. However, I can remember when he was much younger and we were dealing with his behavioral meltdowns. It was a scary and stressful time for all of us. We were compelled to seek medical attention for our son, in order to help control his severe behavioral meltdowns; as they were becoming violent at times. Our son’s neurologist put him on behavior management medication; which helped him tremendously. This was only meant to be a temporary measure. He no longer has to take this type of medication; as he is doing much better now. We have also learned some new techniques in dealing with our son’s behavioral and emotional issues. Strangely enough, some of these techniques evolved from just observing our son on a day-to-day basis and trying to place ourselves in his world; in order to try and comprehend what he’s feeling. They need all the help that we can give to them. We need to try and understand their world first, before we can truly help them. Don’t give up!

  12. Susan says:

    Velvet, your comment made me cry. You have performed a huge service with Samantha’s Law.

    Veronica, thanks for the encouraging words. I’m glad the state never tried to intervene in your lives.

    - SM

  13. social worker, mother of 4, 2 kids on the spectrum says:

    Social workers cannot fabricate stories of abuse and neglect. They are notified by others in the community that believe that issues are present in the home. I agree that a lot of social workers are young and childless and do not truly understand all that goes into raising a family – especially one where special needs are present. It is our job as parents to educate these individuals before they enter our lives. Just as we do when our children go to school, at open house, we give the new teacher a run-down on our child and the behaviors. We need to push for training for social workers, judges, teachers, pastors, etc. Anyone who may see our unique experiences and determine that neglect is an issue.

  14. Susan says:

    Well I had an encounter with a social worker who in the course of an investigation fabricated and distorted evidence resulting in a dependency case being filed. I was told by my team of lawyers that the protections for CPS social workers are so broad that what she did wasn’t considered illegal.

    I disagree that the onus is on parents to educate over zealous social workers. It’s not even possible when you are suddenly on the defensive. Like policemen who encounter individuals with autism and don’t know how to respond, their organizations are responsible for training them in special needs families.

  15. krista furguson says:

    i am the single mother of 2 autistic kids, also have had probs with cps coming in and deciding what they wanted to believe one time someone that stayed with us and i kicked her out, took things that were done and twist them, and just make up some things, like “i gave my kids drugs” which is i give my son medication given by a doctor to help him control behaviors, and i “lock up all the food” aka, i lock the pantry and freezer, his doctor told me to because he was gaining weight quickly and we needed to stop him from eating all day and night, this was a huge nightmare, i too was in the process of packing and getting ready to move, i would not stop my move, though, they terrified my kids, and kept coming bk for months and months, trying to “catch me offguard doing something i shouldnt be” also had probs with my ex who says “there is nothing wrong with his son” and wants to have him visit his house 3 hours away without me or his sister, i am currently awaiting him signing away his parental rights so we can live our lives without fear of him anymore

  16. Susan says:

    I’m so sorry to hear of your troubles and hope it all gets resolved soon.
    Hang in there. This too shall pass…

    SM

  17. MD says:

    I am not a parent, and have no connection to Autism or CPS whatsoever. I stumbled upon this issue online and just wanted to say that I am amazed by all that you poor people have to work through and deal with. You have my best wishes, and I hope everything works out well for all of you and your families.

  18. Susan says:

    Thank you for your kinds words.

    Susan Moffitt

  19. Julie says:

    I suggest doing an internet search under “Autism Experts Don’t Know Much” to see how fed up many parents are of these fake autism experts who know little about autism. This is really sad and disturbing. As the blog written here says, it takes experience and skills to be a real expert in autism, not someone getting a credential and talking about autism as if rattling off a bunch of memorized descriptions. Understanding of autism is key to any expert witness.

  20. jay says:

    we are going through this now. We both have mental illness and have case management and counseling and med management my fiance had a breakdown his meds were not working so he went and checked himself into in patient mental hospital. I am also physically disabled and we have three kids in home. I had one go to her aunts to stay knowing i cant take care of them by myself. He was there 4 nights and someone call child services saying he was using drugs lie and dd had a diaper rash which she is very prone too and has prescriptions for. The social worker scared us into signing kinship papers and letting my brother take my autistic 5 year old and two year old who also is showing signs of being on the spectrum. Because our house was a mess kk had meltdowns daily while his dad was in the hospital i cant bend or lift and Couldnt vacuum the cleaning was started but now she has let our two year old come home but still wont let kk. She has no court order and only the three day respite agreement.

  21. jay says:

    she keeps making sure she comes when we are alone taking advantage of our disabilities and i dont know what to do. We have never hurt our kids they are our whole life! A year ago my two year old was so delayed she Couldnt hold her head up roll over sit up or anything we worked with her took her three days a week to out patient therapy and spent hours of everyday at home doing what we learned there. They thought she would never talk or walk without assistance and today she is at or close to age in all areas she runs and she never is quiet. But when the social worker came we had been up all night with them slept two hours just eating she wanted to take pics of baby having food on her face and i was crying in pain. Had just called my mom to ask my brother to take kk for the night anyway so we could sleep. Someone needs to stop them from destroying families i know a mom who drowned her son he had to be brought back from dead by the Drs and cps gave him to her.

  22. Amanda Miller says:

    Can someone please help me, the school is using CPS to harass my family so we will leave the school district, they cannot handle my autistic daughter who is 7. We have only been in the TEXAS CITY SCHOOL DISTRICT for 1 and 1/2 school years and have already had 2 investigations against us, the second is currently underway. Does ANYONE know where I can turn to??? email me if you have answers firebug8856@gmail.com

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Did You Know?

  • * In 1970, Autism affected 1 out of 10,000 children
  • * Autism now affects 1 out of 88 children
  • * Autism affects 1 in 54 boys
  • * 1.7 million Americans have some form of autism
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