Dear Governor Brown: Is There a Future for the Disabled — Including Adults With Autism — In the Golden State?

Chantal Sicile-Kira May 19, 2011

This first was published on HuffingtonPost.com, May 18, 2011

Dear Governor Brown,

Recently, I read a an article in Disability Scoop discussing a 50-state analysis from United Cerebral Palsy that compared services to the disabled offered across the country, giving preference to states where more individuals are served in the community as opposed to institutions.

California ranked as one of the highest states, coming in at number five. This should have made me happy, considering I’m an autism advocate known for my expertise on transition to adulthood, and I have a son who is now at that magical age of 22 where he is now eligible for adult services.

However, the looming budget cuts remind me of the old Prop 13 days. You were opposed to the passage of Proposition 13, the People’s Initiative to Limit Property Taxation, when you were governor back then. This amendment of the Constitution of California enacted during 1978 cut property taxes, and this decrease in property taxes had a negative effect on public education.

California public schools, which during the 1960s had been ranked nationally as among the best, have decreased to 48th in many surveys of student achievement. Until 1985, California’s spending per pupil was the same as the national average, when it began decreasing.

Years ago, after the passage of the Lanterman Act which gave civil rights to individuals with developmental disabilities in California, I helped prepare young men and women from de-institutionalization so they could live in their own community. Now, my son is 22 and I fear that with the looming budget cuts, the civil rights of many like him will be destroyed, and that institutionalization will once again be the norm for people like him.

Money may not buy happiness, but it does help in providing people the tools to have an education and become a productive member of society, as well as the right to live fully included in the community.

Can you imagine even trying to cut the hard earned civil rights of the African-Americans, or women — two groups who had to fight to be given the same rights as any other (read white male) American? Yet, the state of California is getting ready to cut the civil rights of the disabled and no one seems to notice. The parents of the disabled are so tired caring for their dependent adults and trying to make money they don’t have the time to march or protest in full force.

My son, Jeremy, would be glad to visit you in Sacramento if you need to put a face on the possibilities of the disabled when given a chance, and when families are given the supports needed. You can see how far he has come thanks to his hard work, IDEA and the hard-working public educators. Now, we are struggling to plan his future as budget cuts loom. He wants to become a contributing member of society, but without some help, he won’t be able to do so. What will happen to him, and those like him?

Governor Brown, please think carefully about the civil rights of those with disabilities when you reflect on the budget cuts. They need and deserve our support.

Respectfully,

Chantal Sicile-Kira

Autism can create stress in couples, what to do?

Chantal Sicile-Kira May 12, 2011

Parents all over the world feel the stress of having a child with autism. This letter is from a parent in the UK and was first published in The Autism File.

Dear Chantal,

My husband and I are near a divorce, the pressure is immense with our autistic son who is 4 years old. My husband blames me and I blame him, all our arguments I know are from stress, then we drink to numb the pain of helplessness. We need help and I don’t know where to turn to. I need to talk to someone and I am desperate for my husband to love me again. Autism has simply wrecked our lives, I love my son but I feel I have lost my life and husband now. Please help.

Feeling the Pain

Dear Feeling the Pain,

My heart goes out to you. You are not alone in your situation, unfortunately many marriages become very stressed when trying to deal with having a child with autism. It sounds as if you and your husband need some time away together from your child, time to enjoy each other’s company, to rediscover what you enjoyed about each other before autism entered your life. Try to find someone to watch your son on a regular basis (ie once or twice a week) so you and your husband can leave the home and have a date. Individual counseling for you to have someone to speak to, and couples counseling may help you learn how to deal with the new family dynamics. Finding the right therapist is important. Perhaps contacting your local autism society chapter and finding out if there are any recommendations from other parents. Finally, joining an autism support group could help you feel you are not so alone and you may find other moms you enjoy connecting with. As well, there are many on-line social communities available to connect with to share information and vent. There are more and more dad support groups as well. My best wishes in re-connecting with your husband, and finding the support you need.

Chantal

My son with autism quotes TV dialogue, what do I do?

Chantal Sicile-Kira May 10, 2011

For a while, I wrote an “Ask Chantal” column for The Autism File magazine

So many people enjoyed reading the column that I have taken the liberty of reproducing some of the more popular letters I received and the corresponding advice I gave

If it doesn’t help you, maybe you know someone it can help

Dear Chantal,

My son mumbles and talks to himself all the time

He seems to go into his own world, I cannot get him out

He seems to be quoting parts of films or things he sees on the computer/game boy

Do you have any suggestions how I can direct the speech to a conversation with me? He obviously is verbal but I can’t interact with him

Perplexed

Dear Perplexed,

You don’t mention how old your son is, but the fact that he is quoting dialogue from films or video games is a good sign in terms of his verbal abilities

He may be repeating them because he likes the sound, or he is understanding those words and phrases form listening to them over and over

Pay attention to whether or not he is repeating bits of dialogue at appropriate times, which would show that he is understanding the meaning or intent

For example, my son used to repeat certain lines form Sesame Street that had to do with eating cookies when that is what he wanted to eat

When he slips on the stairs, he says “Whoops! Sorry!” in the same voice he has heard in a favorite video

This is a good sign

I would suggest you get him interested in communicating with you by getting to know the movies and games he is quoting from, and then dialogue and connect with him by repeating them as well

He will be more interested in you if you take an interest in what he is into

You can repeat the bits of dialogue at appropriate moments

Then, use the characters from the movies and write social stories about what they would do in certain real life situations, getting him to help more and more, gradually getting him into talking about the here and now and not so much the pretend world

Using his interest to connect with him and to teach him how to connect with others is an important first step

Chantal

Non-compliance is normal teenage behavior, not exclusive to teens with autism

Chantal Sicile-Kira April 25, 2011

In an earlier post, I discussed the need for teens with autism to have more choices, just like any other teen. So, how can we as parents and educators provide them more freedom, more space? Here are some tips:

Give them more opportunities to make choices, within parameters. For example, if a teenager has had a schedule to stick to after school, why not give him the choice of what order to do it in?
At school, provide more opportunities for making choices, perhaps in choosing the group activity, or more control over planning his schedule, and in how he spends his day.
Give him or her the choice of what the family will eat for dinner, (within limits) once or twice a week – maybe he can even go do the shopping and help prepare for the meal with a helper. responsibility, and that is a lesson all teens need to learn.
Instead of always planning activities or outing for your teen on the weekends, pick one day where your teen can choose on a regular basis what his afternoon will look like.

Have more questions about teens and autism? You may want to consider signing up for my course on Adolescents on the Autism Spectrum.

Why does it seem like their autism is getting worse when they hit puberty?

Chantal Sicile-Kira April 20, 2011

Something happens when children turn into teenagers. They go from demanding your attention to wanting their independence. For those on the spectrum, it may look like non-compliance; they don’t seem to want to follow through on your requests anymore. As a parent it may be hard to appreciate, but this is a necessary development. Being appropriately non-compliant is a positive step towards self-advocacy. However, it is important to differentiate between appropriate teenage non-compliance, and problem behaviors that must be stopped. As a parent it’s important to support your teen as he struggles to become his own person.

When tweens on the spectrum go through puberty and hit the teen years, they also have the same hormones acting up as the neurotypical teens, and they feel the need to be more independent, only they don’t have the same outlets as neurotypicals to show their independence. Thus we see more defiant and on-compliant behavior.

Neurotypical teens are able to communicate to us that they are needing independence, they need more time away from their parents, and more choice over how they will spend their time. Sometimes they start acting up by staying out later than a pre-established curfew, go to parties, and get into environments where they have to make choices about their behavior. They usually have friends, and start negotiating with us to change our house rules in regards to their social outings. At school, they are involved in small group project or on sports teams and they get to make choices that effect the team.

For example, my daughter, Rebecca, loves alternative rock concerts, and has been asking to attend them since she was 11 years old. Now, at 17, the rules have changed in regards to attending concerts. When she was 11, she could go on a weekend night with a few friends if there was a trusted parent who went with them and stayed with them the whole time, and she had to be home at a certain time. Now at 17, she is allowed to stay out later, does not have to have an adult accompany her, and at times can go during the week, depending on school and sport schedule. The rules changed because as she got older, Rebecca argued her case to us, her parents, about why she should be allowed to stay out later, and to show her responsibility.

Pre-teens and teens with autism, however, don’t usually negotiate or tell their parents they need more space, even if they are verbal. They rarely have opportunities outside the home with other teens that are testing their parents authority. Yet, they have the same hormones and the same urge to have more freedom. This leads to non-compliance – which is never any fun for those involved.

In my next post, I’ll give you some autism parenting tips on how to provide your teen or student with more freedom or more space. Meanwhile, you may want to consider signing up for my course on Adolescents on the Autism Spectrum.

Free Live Webinar with Dr. Ricki Robinson – Autism College Visiting Professor

Chantal Sicile-Kira April 18, 2011

Autism College will present a free live Q & A on Monday, May 2, 2011 from 6:00 to 8:00pm PST. Sign Up for this webinar here.

Have you ever wished you had access to a pediatrician who knows a lot about autism – including biomedical therapies and treatments ? Have you ever wondered what a medical professional has to say about the importance of vision processing and why assisted typing works as a communication tool for some children with autism? Sign up for this free Q & A and you’ll be able to ask questions from an experienced pediatrician who is an expert in the field of autism.

Autism College is pleased to announce that our first visiting professor Q & A will be with Ricki G. Robinson, M.D., M.P.H, author of the recently published Autism Solutions: How To Create a Healthy and Meaningful Life for Your Child.

Dr. Robinson,a pediatrician, has been providing hope and help for children with Autism Spectrum Disorders for more than 20 years. Her integrative, strengths-based approach to treatment includes a thorough evaluation of a child’s medical, developmental, social, emotional, behavioral and educational issues to find the solutions that maximize his health and well-being. In Autism Solutions, Dr. Ricki, as she is known to her patients, explains how to establish a team of professionals who can work with the child to give him or her the opportunity to live well, learn, interact and thrive.

Dr. Ricki Robinson is co-director of Descanso Medical Center for Development and Learning in La Canada, California. She is a Clinical Professor of Pediatrics at the Keck School Medicine of USC and Senior Attending Physician at Childrens Hospital Los Angeles. She has been in private pediatric practice for over 30 years, specializing in children with developmental delays for over twenty years. Dr. Robinson received her M.D. degree in 1973 from the University of Southern California. She trained in pediatrics at Childrens Hospital Los Angeles, having served as Chief Pediatric Resident for CHLA in 1976. She is Board Certified in Pediatrics. In 1988 she received her MPH from the University of California at Berkeley School of Public Health.

She has been actively involved in the field of autism since 1990, developing multidisciplinary educational and medical programs for children with Autism Spectrum Disorders and devoting endless hours in education, legislation and research efforts on a national level. She is a founding board member of Cure Autism Now (now Autism Speaks) and the Interdisciplinary Council on Developmental and Learning Disorders (ICDL), and currently serves on the Scientific Review Panel of Autism Speaks, the world’s largest autism advocacy organization. Dr. Robinson organized and chaired the first nationally recognized task force to define the standard of care for clinical trials in autism. The results of this outstanding effort were published in CNS Spectrums (January 2004, Vol. 9, #1).

Tips on helping your child and teen with autism make friends

Chantal Sicile-Kira April 18, 2011

On an earlier post, I discussed why it is hard for children and teens to make friends. Relationships are important, but difficult for many on the spectrum. With help they can learn some social skills that will allow a connection with others to be made on which to form a friendship. Here are some autism parenting tips on how to help them in this area:

Connect with the child by playing with what he wants to play with, and in the way he is playing with it.
Teach him turn taking skills using the toys or objects he is interested in, and then try some simple games.
If the lack of eye contact is getting in the way, suggest that the person on the spectrum focus on the ear of the person they are conversing with. To the conversation partner, it will look like they are making eye contact.
Teach social skills to the level possible. Teach about body language and social cues. Think of how foreigners in a strange land don’t understand the local customs and have to learn them: it is the same for a person with Asperger’s and neurotypical body language and social cues.
Teach wherever possible beginning and ending conversations and what kind of topics to bring up. Practicing them in a small group with peer tutors or buddies is a great way to get used to using them.
Find special interest groups where they can discuss the topic they are passionate about at length. For example, if they are into Legos, trains, or Star Trek, find a local club that is based on that interest. Then limit the conversation on that topic to specifically scheduled times and to the club, by reminding them they can talk about it then.

For more information and autism parenting tips on teens and relationships, read my book Adolescents on the Autism Spectrum, or sign up for my course on Adolescents on the Autism Spectrum.

How can we help our children and teens with autism make friends?

Chantal Sicile-Kira April 14, 2011

From the neurotypical person’s point of view, it seems as if children, teens and adults on the autism spectrum are not interested in having friends. They do not show the same type of social cues or social behaviors and body language that indicates to others that they want to have a relationship. The adults I have interviewed make it clear they enjoy having relationships, including those who are mostly non-verbal such as Sue Rubin (“Autism is a World”). My son Jeremy often communicates about wanting to have friends. However, understanding the concept of different types of relationships and knowing the appropriate behaviors and conversations expected from the neurotypical viewpoint, does not come naturally, and can be magnified for those who are non-verbal.

Ways in which it is difficult for them to make friends:

Many children on the spectrum are good at playing alongside, but not with, peers. They may be fascinated with a toy, but not play with it in the way it is meant to be played with, which means that peers may not connect with him.
Games are difficult. They need to learn turn taking and waiting.
They may be very interested in certain objects or past times that are not usual for the developmental level
They have a hard time making eye contact (as discussed elsewhere), and for many neurotypicals, eye contact is important and if you do not make eye contact then you appear rude or shifty.
Children and teens may have poor social skills.
They are not good at picking up on non-verbal communication skills, such as social cues and body language, and this makes it hard for establishing a relationship. Those who are non-verbal may have communication systems that are limited and unfamiliar to neurotypicals.
Many who are verbal are not good at social chit chat and are frankly not interested in it because they don’t get the point of it. Often they have difficulties starting and ending conversations, or only want to speak on topics they are passionate about.

In my next post I will discuss tips on how you can help your child learn skills that will help him / her have meaningful friendships.

For more information and autism parenting tips on teens and relationships, read my book Adolescents on the Autism Spectrum, or sign up for my course on Adolescents on the Autism Spectrum.

Tips on getting your child with autism the right education

Chantal Sicile-Kira April 12, 2011

As described in a earlier post, your child has the right to a free and appropriate education under The Individuals with Disabilities Education Act (IDEA) and you must learn to advocate for your child. Following are some tips in regards to ensuring that your child gets the educational help he or she needs:

Know what your child’s educational needs are.
Learn about the educational strategies that work the best for students that resemble yours on the autism spectrum.
Learn what you can about your local school district. School districts vary depending upon the administrators in charge and how they are funded. What do parents and professionals in your area have to say about the different districts?
In some geographical areas there are knowledgeable educational consultants who can help. Try to find one experienced with the level of autism your child has by asking knowledgeable parents in your area if they have used one.
Get to know the different school options in your area. What do parents and professionals have to say about the different classes and school sites?
Learn about IDEA and “No Child Left Behind” and what the parent’s duties as well as what the school’s duties are in terms of the education of children.
Visit different types of classrooms and different school before making a decision regarding your child’s educational program.
Develop and maintain good relationships with school staff, educators and other professionals there to help your child, as well as in the community.
Keep good records of any phone calls, meetings, conversations about your child.
Keep good records of all assessments and IEP’s.
Do not be afraid to ask questions, and do not feel intimidated by the professionals. Remember you are the expert on your child.
Monitor your child’s progress and educational program.
Keep focused on your goal – a free and appropriate education for your child.

Remember, an informed parent is the best advocate for your child! Read more in my book, Autism Spectrum Disorders. Tips on how to communicate and negotiate more effectively with your school will be given in the course Empowerment Strategies for the ASD Parent.

Making sure your child with autism gets a good education at school

Chantal Sicile-Kira March 23, 2011

A good education is important to helping a child to develop and learn. In the United States we are very fortunate to have The Individuals with Disabilities Education Act (IDEA). If your child has an autism spectrum disorder and needs special education, you will need to become familiar with the rights your child has under (IDEA).

Since 1975, IDEA requires that all individuals have access to a ‘free and appropriate education (FAPE).’ IDEA is a federal act, and each state may not take away the special education rights provided under IDEA, but may provide more.

Basically, every child under the age of three and at risk of developing a substantial disability if early interventions are not provided is eligible for early intervention. The names of the different programs my vary by state, but you can check with your state’s Department of Health, Department of Developmental Disability, or Department of Education about early intervention. If you need help finding help or information in your area, look at the website of the Federal Interagency Coordinating Council (www.fed-icc.org).

In the educational system, if a student is eligible, an Individualized Education Program (IEP) is developed that sets out the ways the child will be helped with his areas of difficulties, and goals and objectives are developed. The IEP is developed by an IEP team at IEP’s that take place at least annually.

An IEP team consists of the parents, the child’s teacher, a general education teacher, a special education administrator, any professionals providing services such as occupational therapy, speech and language therapy, and adapted physical education.

Sometimes, some members of the IEP team and / or the parents may not be in agreement as to how a child’s educational needs should be met, and what constitutes a ‘free and appropriate education’ for your child. As a parent, it is important to get to know how your child learns. Remember that you are the expert on your child. Also, it is important to keep abreast of the educational methods that are out there that may help your child.

If you are in disagreement with the rest of the IEP team, there are appropriate ways for you to express your disagreement. The first step is to try and have good and open communication with your child’s teacher and other professionals involved in helping your child with his difficulties. The second is to make sure you know your child’s rights under IDEA. As a parent you will need to become an advocate for your child.

As laws and regulations change, parents and educators can stay informed by checking the US Department of Education (www.ed.gov) and your state department of education.

Most, if not all, states have an agency that helps people with disabilities and tells you your rights in plain language, and provides information in different languages. To find out how your state interprets IDEA, These are usually called Protection and Advocacy offices. Often these agencies have decoded the complicated IDEA and made it available on-line in easy to understand layman terms so that parents can understand the rights their children have in terms of education.

In my next post, I’ll cover some autism parenting tips to ensure your child is getting the education he or she needs. You can also read more in my book, Autism Spectrum Disorders. Tips on how to communicate and negotiate more effectively with your school will be given in the course Empowerment Strategies for the ASD Parent on Thursdays May 5,12,19,26, from 6:00 – 8:00 PM PST.

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