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Opinion / Columnists / Policy points

Why too many children with autism end up in foster care

by  /  9 January 2018

Foster care is intended as a temporary solution for children whose parents cannot care for them. At any one time, about half a million children in the United States are in foster homes.

Policy points:

Frank talk about policy issues in autism

The foster care system has a reputation as a place for children who are victims of abuse or neglect; this reputation is only partially deserved. About half of children in foster homes have a chronic disability that can make caring for them difficult. In fact, many of these children enter foster care because they have complex medical needs that their families cannot manage, often because of limited resources.

When children enter the foster care system, they are automatically enrolled in Medicaid, and their foster parents receive funds for their care. As a result, this system is becoming a critical component of caring for children with disabilities.

We have found that children with autism are particularly likely to end up in the foster care system.

Long- and short-term outcomes for children in foster care are not good: Children who spend any amount of time in foster homes are less likely than their peers to graduate from high school and more likely to end up homeless, in the criminal justice system or in long-term residential care.

Foster care may be an even less desirable place for children with autism, given their special needs. Although foster parents may receive some specialized training, it is generally not nearly enough to help them adequately care for these children.

Disability policy, especially that specific to the healthcare and child welfare systems, should be designed to help the children’s biological or adoptive parents care for them and keep them in their homes.

Moving out:

Because all children in foster care are on Medicaid, using Medicaid claims is one of the best ways to study the prevalence and healthcare experiences of children with autism in the system. In our first study using national Medicaid claims, in 2008, we found that 7.3 percent of Medicaid-enrolled children with autism were in foster care. This is well above twice the proportion of all Medicaid-enrolled children in foster care1.

Last year, my colleagues and I decided to address this question in a more rigorous way. We wanted to know how the prevalence of children with autism in foster care is changing over time. We also asked whether children with autism are more likely to enter foster care than their neurotypical peers.

To see if there is something specific to autism that puts a child at risk for ending up in foster care, we compared children who have autism, intellectual disability or neither.

We found that the prevalence of children with neither condition in foster care was stable from 2001 to 2007, ranging from 3.5 to 3.9 percent. The prevalence of children with intellectual disability was more than twice as high in 2001 (8.3 percent), but went down over time to 7.3 percent in 2007.

The prevalence of children with autism in foster care started out slightly lower; it was 7.5 percent in 2001. It climbed to 10.5 percent in 2005 and then declined to 9.1 percent in 2007.

When we statistically controlled for children’s age, race, sex and state of residence, we found that children with autism were 2.4 times more likely, and children with intellectual disability 1.9 times more likely, to enter foster care than typical children2.

We don’t know why this is so, but we see at least three possibilities — all of them related to the challenging behaviors that often accompany autism and the difficulty in obtaining high-quality care.

First, raising a child with autism is stressful for families, as the condition is unusually difficult to manage effectively. Some parents may simply not have the skills and resources to do so. This may result in neglect or abuse — and placement in foster care. Alternatively, families may voluntarily place children with autism in foster care because they can’t handle the children’s behavioral problems. Third, parents may relinquish custody so that their children can obtain Medicaid-funded or residential care that they otherwise cannot afford.

These three scenarios are known to happen among other children but have not been studied in those with autism.

Help for families:

To lower the chances that a child with autism will land in foster care, clinicians working with these families should talk openly about the stresses of raising a child on the spectrum. They should ask how that stress is manifesting in the family, and assist the family members in getting the support they need.

In addition, all U.S. states should offer home visits from professionals or short-term breaks for parents of children with autism. (Only a handful currently do.) Home visits and respite services have been shown to lower the chances of psychiatric hospitalization among children with autism, and also may reduce the risk of foster care placement3.

Foster care arrangements may involve care from a relative, from a stranger or in a residential facility. Public funds pay for all of these placements, which can cost between $30,000 and $50,000 per child per year. That means that if we can identify children at high risk for foster care placement, we could intervene intensively and still save money.

Beyond cost savings, we have an ethical obligation to help families care for their children with autism. We can and must do better to help these most vulnerable children and their families.

David Mandell is director of the University of Pennsylvania’s Center for Mental Health Policy and Services Research.


References:
  1. Mandell D.S. et al. Pediatrics 121, e441-e448 (2008) PubMed
  2. Cidav Z. et al. J. Autism Dev. Disord. Epub ahead of print (2017) PubMed
  3. Mandell D.S. et al. Arch. Pediatr. Adolesc. Med. 166, 68-73 (2012) PubMed
  • Planet Autism

    You’ve missed out other vital reasons for children ending up in foster care (or indeed going into ‘care’ homes, or being forcibly adopted). Many autistic children (including those undiagnosed) end up taken by the state through autism ignorance and falsely accusing the parents of neglect or abuse. In fact, the action of taking them into care can be a reason to prevent diagnosis and therefbre access to expensive resources. A hot favourite to falsely accuse parents with is MSBP/FII or emotional abuse, also neglect. Autism ignorance is responsible for a lot of shocking discrimination against autism families.

    In the UK, recent research has shown that there is widespread discrimination against autistic mothers. Autistic children are not unlikely to have at least one autistic parent, as it is a heritable condition. Many females are undiagnosed and their communication is misunderstood and misrepresented by professionals.

    “Positive and Negative Experiences of Autistic Mothers”

    “​Disturbingly, approximately 1 in 5 mothers of a child with autism, regardless of maternal diagnosis, were assessed by social services; of those, 1 in 6 had their child compulsorily placed for adoption. Finally, rates of allegations and investigations of suspected fabricated illness amongst children with autism and their siblings were two orders of magnitude higher than the known incidence the UK.”

    “Conclusions: Mothers with autism would benefit from far more and better tailored support. Allegations
    of fabricated illness, and high rates of surveillance by social services suggest there may be discrimination towards mothers with autism.”

    https://insar.confex.com/insar/2016/webprogram/Paper22166.html

    In the UK, also law firms are now starting to report on the issue of families with autistic children being targeted with malicious and unwarranted child protection interventions as a result of challenging local authorities for SEN provision for their children.

    http://www.hcbgroup.com/site/blog/education_blog/parents-face-new-obstacle-for-sen-support

    Other research (instigated by a parent of autistic children who was targeted with false accusations of child protection concerns) has found that (in the UK at least) there are significantly higher rates of ASD in children in the care system than in the general population and that children are not routinely screened for autism when entering care. You can put two and two together there.

    http://childprotectionresource.online/autistic-children-in-care-uninformed-decision-making-leading-to-poor-outcomes/​

    “Asperger’s Syndrome – Who is Being Abused?

    Archives of Disease in Childhood 1991; 66: 693-695”

    “Six case histories of children referred and admitted to a psychiatric inpatient unit at a tertiary referral centre because of concerns about poor functioning and possible emotional abuse are presented.

    On initial assessment the children appeared to be well functioning and the impression was confirmed that their emotional needs were not being met by their parents.

    After detailed inpatient appraisal the diagnosis of Asperger’s syndrome was made in all six cases…”

    But consider, that these children were screened for ASD, many are not. And this was done after they had been taken from their parents. The damage is done by then.

    In the UK, the bar is set far too high for family support and then people struggle to cope. But even where they are coping, simply in seeking to have their child diagnosed, or have their needs met in the educational system is frequently resulting in social services getting involved and making false accusations. This can be to cover diagnostic failure/negligence, schools avoiding costs etc.

    There is no mandatory autism training for social workers, who operate in a tick-box parent-blame culture. Of course, local authorities get brownie points from the regulatory body Ofsted for removing children from parents.

    “Social workers are regularly “sexing up” dossiers on problem parents to remove children into care and even to farm them out for adoption, a whistleblower (works for a large authority in the south of England) reveals today.” (2011)​

    https://www.express.co.uk/news/uk/289232/Social-workers-sex-up-abuse-claims-to-snatch-children-for-adoption

    They are demanding “more dirt” on mothers and fathers to increase the chances of securing court orders that place their children into care and which boost councils’ Ofsted ratings.

    When asked for an example, he said: “In order to get a child through to a child protection conference, we’re told to make the situation look bad and worse than it actually is.”

    https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/302339/Final_Research_brief_-_3rd_April_2014.pdf

    “The majority of children in the ‘Left home’ and the ‘At home’ groups had diagnosed developmental or mental health conditions: a quarter had been diagnosed with an autistic spectrum disorder and many had multiple diagnoses.”

    • Tonia

      I have to agree with you on the reasons why children with autism enter into the system. I had one mom have her child taken away from her due to; her child was found on the freeway in only a diaper. The next day I received this child in my care and she went through my window and two 6 foot fences to play ball with the neighbor children. I call the social worker asap and let her know what happen and the case pending was not the mothers fault. Needless to say she was with me for 2 years before her dad could have her. So many parents are not trained on what to expect or how to apply safety tips for children with autism.

      I am a professional foster home who only cares for children with autism and the only thing that irritates me is that most parents get burnt out and not only have one child but several along with being single and the schools call all the time due to the lack of training in schools for them to come and pick up their child along with the lack of daycares having training also. Thats it! what a great idea. I will start a youtube channel training parents, foster parents, schools and daycare. I hope this will work!

  • eeka

    This is wonderful. I really appreciate you bringing attention to this intersectional issue.

    Yes, I agree there are some other issues to add. CPS in many US states is taking a “better safe than sorry” approach, so anything unusual is viewed as a risk factor. Both professionally and in my own experience as a foster and adoptive parent, I’ve seen clinicians (directly in the system as well as others who see kids in clinic and school settings) misinterpret autistic behaviors as a child being unattached to parents, fearful of parents, not used to being out and about, and so forth. Parents who are appropriately accommodating an autistic child by providing prompting and reassurance are seen as alternatingly too strict and too coddling. The tendency is especially that these behaviors in richer whiter children are seen as “clearly has sensory issues, let’s get an eval” and in poorer and less white children are seen as “stemming from environmental issues.” There is considerable evidence that Black and Latino children are very much underdiagnosed with autism and related diagnoses and are instead given diagnoses of behavior problems and poor parenting.

    Additionally, there is research showing that in utero substance exposure increases autism prevalence considerably. These children are frequently involved with CPS. Prematurity also increases autism prevalence, and these children are overrepresented in CPS, both because the premature birth can be related to maternal health and environment, and because families of babies who stay in the NICU are more thoroughly scrutinized as to their living situation and ability to meet the child’s medical needs. (Not saying this is a bad thing, just that the families of most babies who aren’t premature and don’t have any medical needs are automatically assumed to be able to take their baby home and care for them until signs suggest otherwise.)

    Finally, involvement with the system is traumatic and stressful. We all know this. While autism is obviously not caused solely by trauma and stress, people with autism report that their presentation and functioning can be vastly different depending how stable their life is at the moment. It does follow that many children with a milder presentation of something-probably-resembling-autism might not ever need a diagnosis and services if they remained at home, but when moved from home to home and facing extreme unpredictability, might present with very obvious signs of autism.

    • Planet Autism

      “While autism is obviously not caused solely by trauma and stress”

      Autism is not at all caused by either of those things.

  • Peter Lloyd-Thomas

    Being in foster care may be much more preferable to living with biological parents who cannot cope with the challenges of severe autism. Not everyone can cope and much better to be in a family environment than in an institution.

    There are foster parents who take on multiple siblings and avoid the trauma of separation.

    • Planet Autism

      Have you read of the abuse rates of children in foster care? Far better actually to remain with birth parents and where they are struggling to cope, the authorities provide appropriate support and respite.

      • Peter Lloyd-Thomas

        You should read about the long running Bucharest Early Intervention Project, which has been been covered on Spectrum News.

        It compares the outcomes of what happens to children abandoned by their parents, they either go to high quality foster care or they go to an institution. Foster care comes out vastly better, even showing differences on MRI

        http://www.bucharestearlyinterventionproject.org/

        There are some great foster parents and you would have to be a saint to want to care for someone else’s disabled child, but such people do exist and good for them.

        Of course you will find people wanting to do this just for money, but that is why you have to screen potential foster parents. Nobody screens biological parents.

  • Dewalt

    Hi there, how do you get to live in a foster home?

  • Retro80Lady30 .

    I seriously doubt foster families, and adoptive families are taking in these children, and keep them. Many are on medications, and have caused damages in the home worth thousands of dollars. We may never be able to rent again because we have no money to fix these damages unless his family members sign for us. The stress levels would be up the roof, and many are sent to group homes, nursing homes, and institutions. Society is wrong expecting aging parents to take on this huge behavior load of a child that may never progress beyond a toddler or a small baby. We need breaks, and at least temporary housing on, and off for those severely affected. People think we get sympathy for having a special needs child. Unless your child looks deformed we do not get sympathy just people treating us like we are garbage blaming us for our problems. These people look like monsters to us, and probably would not last a year in our shoes the fact you can go home to a clean quiet house makes it all the easier does it. I’m the expert in this situation because I live it every day of my life which I no longer have a life of my own because my love for my son keeps me going, and God only. My other two children are suffering right along with us. Then again heartless people don’t think about the fact that even though my son is not in a grave he has mentally died because he will never live a normal life, or be able to take care of himself. I feel I already lost a child. Think about that when dealing with parents like me in this situation. Without God many people can lose it. This situation has actually brought me closer to understanding a spiritual life with God. You say you love kids but after being in a situation like this it can make you think things you never thought before. The reason I say this is when he is at school or with other people they treat him like he is any other child with just behavior problems then they overreact when he does something that makes them angry or they take it to personally which results in police being called. When do people get it in their heads he is not mentally well he is suffering in his own body think about that he doesn’t mean to do those things his brain can’t think properly. I fear for his safety because I know people will not be able to deal with it. Nobody wants to listen to my advice. I feel so bad for these families because they try so hard, and don’t get rest they get overwhelmed which can lead to abuse and neglect in some cases. I see how the world is so selfish now when there are people out there suffering. You need to do statics on how long these children survive in the system, and were they go afterwards. We need to know the life span of these children which does not seem very long. There was a man that lived above me with mild autism, and he died as a result of his medications he got gout, and never recovered. I think there is an industry of people exploiting these families, and making money off of them nobody talks about a cure or natural methods to help these kids get better. We have been harassed for things beyond our control it is sickening. Being from foster care myself I never felt love from anyone I felt like I was a number, and a paycheck. You really want to make a difference donate your money to help build housing for those severely affected, or moderately affected. A place were parents can get some rest a couple hours is not long enough. Remember what will we do when we get to old, and our children are ten times stronger than us. Even his school can’t keep him in a room he has ran more than ten times just this last year.

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