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The Real Priorities in Advocacy – Keeping the Whole Child, the Whole Family and the Big Picture in Mind

In my observation, an effective Autism Advocate is someone who is often isolated from the rest of the “typical” society because they are the parent of a child with Autism, which is a 25 hour a day job. They become consumed in caring for their child on top of their other life duties such as caring for their other children and their partners or themselves for that matter. If they are lucky enough to have a partner that is mutually engaged in the care of the rest of the family, they only have to work 24 hours a day. An Autism Advocate is selfless, caring, nurturing, and as fierce as a mother bear protecting her cub. They become negotiators (sometimes terrorist negotiators), politicians, peace keepers, lawyers and emergency service workers all in one. They are educators, anger managers, social workers and crisis counselors. They are Moms and Dads. They are probably the most knowledgeable and intelligent individuals known to mankind in dealing with an autistic person without a degree in any of those particular fields (in most cases) because they have dedicated their lives to the care of their children and their children’s disease. They are tired, overwhelmed and almost always lonely because most people do not understand Autism and find it easier to ignore or blame on parenting skills. “They are the definition of LOVE” – Tom O’Clair, Dad of Timothy.

I am a very lucky person! I get to meet the most interesting, smart, tenacious and wonderfully different people. They may be parents, doctors, teachers, social workers, human service professionals, politicians and most importantly people with an autism spectrum disorder.

I work part time in a residential treatment facility for children with significant mental health challenges ages 5-14. I also volunteer to advocate for families in my off hours and I run a support group for parents of ASD children. I have helped start a very successful recreation program for children who have an ASD as well. I am also an intricate part of the Children’s Mental Health Coalition of WNY, Inc, a family run family support agency for families of children and youth with emotional, behavioral, social, learning, and developmental disabilities in 19 counties in Western New York. In this part of my life I provide educational workshops and consultation services for families served by and the agencies involved with the “Coalition.”

 

What Can an Advocate Do? Why is Advocacy Important in the World of Autism?

 

An advocate can be the most valuable person on any team when dealing with helping a family function and be successful when autism has become part of their life. We often help professionals navigate and interpret a tough situation. There are many different types of advocates and a family may need to use the services of more than one at times.

I am a family advocate, so when I work I try to keep the whole family in mind no matter what the makeup of the family is. I find that most times the family is in need of advice. Some families may need education about the specific disabilities associated with autism so they can accept their child’s challenges and the different ways they may have to parent – versus how they originally thought they were going to parent. Families need to understand that there are three big systems they are going to have to navigate (State Education Department, Office of People with Developmental Disabilities and finally The office of Mental Health) and hopefully give them a sense that they are not alone. I try to help build confidence and courage that a family will need for the years to come.

Here are some typical ways that I meet and work:

 

  • I usually get a phone call from a parent or a professional asking if I can help. Many times, the issues are the same, sometimes there are extraordinary situations that I am astounded can still be happening in this day and age! This call often comes when there is a crisis.

 

  • I usually spend time asking the parents or the young adult if they have their records together. So many times, a family has no idea that everybody else is going by those records except for them! They do not understand what the records say, and they do not know how to use them to access the care and treatment their loved one needs!

 

  • I usually need copies of the records so that I can write on them and highlight the red flags or important info I want to speak to them about. I will try and organize the originals in a binder so that they are all together and in some kind of order.

 

  • I also use some tools and questionnaires of my own that help me learn about the specific ASD traits and/or skill deficits that may go unrecognized yet are key to helping the child be successful.

 

  • I can usually spot where there may be missing assessments that the parents have not known to ask for, and these can be vital in helping them get a proper diagnosis and/or access the services that they need. For example, I am still surprised by how many children with autism have never had a language and communication evaluation which can be one of the main core issues causing behavior and emotional problems. A child with high functioning autism may speak at a very high level but with little give and take communication. Often times everyone assumes the child can understand and perform at that high level. Imagine 85% of the child’s verbal interactions are being misunderstood or not understood at all? No wonder they are acting out or are depressed!

 

  • I might then recommend some classes at our parent center. I might help the parent write a letter to the school district to request some of the key missing assessments. I might ask if the parent is interested in having some private testing done. I keep contact information for several agencies and doctors to make sure that the parents know what’s out there and that there is some choice. Most of all I let them know they are not alone.

 

  • Sometimes I am called to attend a school meeting. I hope to have read all of the child’s records beforehand but sometimes that is not possible. Asking for reasonable accommodations is what is needed many times, but parents are unaware that they have that right or what some of the best accommodations are.

 

  • I help the parents understand their rights in all of the systems.

 

  • Sometimes I will involve other advocates such as an educational advocate, a legal advocate or a medical advocate. An experienced advocate should be able to say, “This is not my area of expertise,” or “I don’t know the answer but I will find somebody who can help.”

 

  • Many times a family is looking for a support group with others who are experiencing the issues for themselves and their children. This can help them find friends and not feel so isolated and judged.

 

An advocate’s job is changing all the time. I am able to notice trends in the school systems or other areas. I know where the appropriate services can be accessed so that parents are not wasting time. I also know the tricks of the trade that nobody ever tells the parents. I try to create a network of support for families so they are not so isolated. Sometimes I work with extended families so they can become accepting and supportive. I do my best to create advocates of the parents who seek me out so that they learn how to be the best advocate their child has.

My job has many rewards but there are still many serious challenges and frustrations too! If you suspect your child may have an autism spectrum disorder, I would encourage you to seek out an advocate. Ask what their credentials are; make sure you know what type of an advocate you are getting. Ask if they are well networked. Who do they work for and who else do they know that may be of help to you. Lastly, trust your instincts if the advocate is not a good fit for you and find one that is. It’s ok to ask for references and to speak to more than one advocate. Autism is a complex lifelong challenge that affects the whole family in many ways – being alone should never be the way a family has to exist. Finding a good advocate will hopefully make the journey worth the effort and hopefully empower the family and person with autism be the best person they can be.

 

Christine Rosenow Hoff is a family advocate, educator and consultant for the Children’s Mental Health Coalition of WNY, Inc., which is located in Amherst, NY. For more information, please visit www.raisingminds.org.

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