Unaided Parents and Severe Autism

Recently, I’ve noticed a trend wherein brave parents of children with autism who are severely affected, go on the Internet to tell all about the miserable truth regarding the disorder. To live with a child with classic autism is devastating and frightening. The accurate descriptor would be: nightmare! 

Every time I read one of these posts, I can’t help but think: why are these parents doing this by themselves? Why is there no professional involved in setting up a treatment program for their child? If there is a bona fide autism professional involved, why is horribly egregious behavior still happening?

The science of behavioral treatment has come a long way and there are professionals who arequalified to eliminate anti-social behaviors and encourage pro-social behaviors. If the issue is money, which it often is, these parents would be wise to see that what monies are available can possibly be redirected toward a behavioral treatment consultant who can set up a treatment program to extinguish maladaptive behaviors.

We all know that government programs set up to help are usually a huge pain to navigate. It’s exhausting and frustrating to advocate for one’s child in a mindless bureaucratic system. However, if the child is truly out of control and is aggressing toward the parent, it’s only a matter of time until the system inherits responsibility for that child. Therefore, it’s in the best interest of “the system” (i.e., less expensive) to support the child at home. If the parent can bring this message across successfully, the system will probably find monies to divert to the proposed in-home behavioral treatment program. If the parent cannot do this on his/her own, perhaps a local advocate or attorney can assist in bringing the cost-benefit argument across persuasively to government officials. 

It is truly outrageous that families of severely autistic children suffer in this way, especially when there is a viable alternative a phone call away.

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Sabrina Freeman, Ph.D. on Twitter
Sabrina Freeman, Ph.D.
Sociologist (Ph.D. Stanford '95), autism advocate, author of several books & a DVD on autism, mother of an adult w/ autism, founder of FEATBC in '96.
Sabrina Freeman, Ph.D.

Sabrina Freeman, Ph.D.

Sociologist (Ph.D. Stanford '95), autism advocate, author of several books & a DVD on autism, mother of an adult w/ autism, founder of FEATBC in '96.

0 thoughts on “Unaided Parents and Severe Autism

  • November 26, 2012 at 11:58 pm
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    My niece’s daughter is profoundly autistic.  She didn’t speak until she was 6.  My niece struggles with trying to get the services her daughter requires, but somehow she keeps it all together and manages to support the family on her wages as manager of a drugstore.  My niece has learning disabilities that prevented her from finishing her 8th grade year, so how far she’s come, and how effective she is as an advocate for her daughter is truly inspiring.  It’s not easy.  

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  • November 25, 2012 at 10:36 am
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    I have to agree with the above comment.  In our state (Kansas) there is a 5 year waiting list for in-home supports.  We applied for services with the state/county developmental disorder org. when our son was 3.  His time on the wait list did not even start until he turned 5.  When he turned 10 his turn for services came up.  With the dire straits that the ecomony is in for not just KS but the nation, do you really think the wait lists will get shorter, there will be more $$ for what families need???  Our kids are not a top priorty on any ones agenda but our own.

    The system can not withstand the increase in those with developmental disorders, for which autism is just one of several, that parents can apply for and receive help with.  As far as I know there is not a grading scale for wait list.  The severity of the disorder does not mean you get off the waiting list sooner than later. Once off the wait list amount and type of services vary depending on the severity of the disorder.  We went into debt, let our house start to fall apart to put our son in a private autism training center when his behaviors got out of control and the school district refused to acknowledge their part in that regression, that his behaviors were anything they could not handle.  We watched our little boy descend into innumerable self injurious behaviors but because he was too small to really hurt anyone else with aggression the school refused to appropriately deal with it.   4 years, $200,000, later in attorney fees and private education, my son’s behavior got better and he started learning, and the public school now treats him and us with respect and serves him appropriately.  But our other kids – the entire family paid dearly for it. 

    Most families wouldnot be able to do what we did.  Many would not think what we did was necessary and we should have just lived with it and give the school district a chance.  We felt we had no choice.  We will continue to advocate and sacrifice for our son 

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  • November 24, 2012 at 5:27 pm
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    A viable alternative phone call away?  Really?  You were pretty vague about what that alternative is.  Advocates and attorneys cost money and redirecting unsaid source of money is not an option for many.   Navigating the system is exhausting and there isn’t a lot of compassion for an overworked system with diminishing resources.  These parents don’t have energy to spare. If there are actions that can be taken please specify them more clearly, otherwise they just don’t help. 

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