Asperger’s Syndrome and why some adults may not have been diagnosed

May 26, 2011

This was first published in my “Ask Chantal” column of the Autism File.

Dear Chantal,

I am currently reading your book Adolescents on the Autism Spectrum,… I have a son who is 27 and throughout his entire life he has been different… Recently I have come to believe he is autistic. My girl friend who has a 13 year old autistic son, says she has always wanted to tell me that she feels the same way in the belief that he is of the autism spectrum, possibly Aspergers. He has almost all the symptoms. I am now in the process of trying to get my son into some doctors in Melbourne, FL who are specialists… He has been a struggle to raise with all of his illnesses and challenges. He has been with disabilities since he was 4. We have been seeing the same psychiatrist for 22 years and were going to the same pediatrician for 17 years. …Why has no doctor been unable to suggest this diagnosis? Help me please. I am very interested in knowing if you have any other books out for adolescents and young adults with autism and/or Aspergers?

Jamie in Florida

Dear Jamie,

It wasn’t until 1994 that Asperger Syndrome was added to the DSM IV (Diagnostic and Statistical Manual of Mental Disorders) which is used for establishing diagnoses. It is only in recent years that Asperger’s Syndrome (AS) has become more understood and recognized by professionals and parents. That is why many adults with AS were actually misdiagnosed as children, often with bipolar, schizophrenia, OCD, and so on. You are right to look for a specialist experienced with Aspergers to ascertain if your son falls on the spectrum. Being properly diagnosed is useful for knowing why someone is the way he is and what strategies can be helpful in the areas in which he may have challenges.

My latest book, Autism Life Skills, based on interviews with adults on the spectrum may be helpful to you and your son to find out what many people on the spectrum say has been helpful to them. As well, you and your son may find GRASP a useful resource for more information.

Chantal

 

Will mouthing objects interfere with my son’s speech development?

May 23, 2011

This was first published in my “Ask Chantal” column in the Autism File magazine.

Dear Chantal,

My son has been diagnosed with autism since he was 3 years old.  He will be 5 years old in June of this year but he is still mouthing a lot of things.  He loves to put his toys likes legos or blocks and any other items around him in his mouth and will bite them.  My son is non verbal although he is currently talking in baby language and making noises.  I have tried explaining to him using sign and facial expression not to mouth the things around him.  I believe he understands what I am saying as he stops doing it and then after a few seconds he starts to mouth the things again.  I have been giving him the chewy tubes recommended by the occupational therapist and he chews them for awhile and then throws them away and seeks to mouth other things.  He loves to feel the water by rubbing some water or even soap with both the palms of his hands and then runs them through his lips to sense it.  I am so worried as I have tried everything even massaging his checks and using an electric toothbrush.  A speech and language therapist that saw my son said that it is possibly his sensory concerns that is stopping his speech from coming on.  I am so worried as I do not want this stopping my son’s ability from talking and am also concern that this habit will not stop until he grows up.

Your advice and guidance on this matter is greatly appreciated. Thank you very much.

With best regards,

Suha

Dear Suha,

It is a very good sign that your son is talking in baby language and making sounds- these are precursors to true language. Luckily, from what you say your son is only mouthing, and not eating these other objects, which would be far more serious.  In regards to the oral fixation, all babies go through a period where they are mouthing everything to explore their environment, and perhaps he is going through that developmental stage now, as well. However, you are right to be concerned as these  kinds of  oral hyposensitive issues are common with children with autism, and we can’t just hope our children will outgrow them. Mouthing objects shouldn’t interfere, but you do want to work on strengthening and toning the oral area and articulators. Usually as these areas strengthen the mouthing will decrease. It would be a good idea  to talk about this with an Occupational therapist that is experienced with that age group fo children with autism and with sensory integration challenges. Here is a website that may be helpful with some ideas : http://www.sensory-processing-disorder.com/oral-sensitivities.html.  Also, try to find a parent mentor to ask about similar situations and what has helped, by visiting the TACA website http://www.talkaboutcuringautism.org/index.htm I would continue to offer him safe items to chew on, but I would also suggest that you encourage him to use his baby talk, verbal sounds more and more by trying to get him to  sing with you, and engaging him in ‘conversation,’  ie back and forth verbal exchanges even if just sounds. The more practice he has using his sounds appropriately (in a fun way) and using those mouth muscles,  the more possibility of him using his sounds to speak.  Also, if he is busy trying to sing and speak with you, he can’t be mouthing at the same time.

Chantal

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

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

 

Jeremy’s Graduation Speech

May 13, 2011

Some people have written to me to say that Jeremy’s graduation speech is difficult for them to understand on the U-Tube video, so here is a transcript:

I have spent seven years at Torrey Pines High School.

Three years ago, I walked the graduation ceremony. Today I walk the same path, in the same cap and gown, but I have now earned my academic diploma.

My education at Torrey Pines has been my greatest achievement. I was once diagnosed autistic and severely retarded. When I arrived at Torrey Pines, I could not communicate and I spent my days in a class for the severely handicapped. Now I am going to college. I am writing a book about my life. I have become an inspiration nationally to many parents and educators of children with autism.

My story is like Helen Keller’s, the deaf, mute, and blind girl. Helen Keller had a teacher, Anne Sullivan, who taught her and took her out of isolation. My first great teacher was my mom, then the high school teachers.

My favorite story about Torrey Pines is when my teacher, Allan Gustafson, realized for the very first time that I understood everything. He was really trying to learn how to communicate with me. He said “Jeremy, I know you are in there somewhere. I can’t know what you are capable of unless you tell me.” I looked at him and saw tears in his eyes. I really wanted to make him happy. My nice teacher continued to try and reach me. He said, “Give me a sign.” I looked at him and spelled with him for the first time. Great teacher Allan was so happy.

The teachers here gave me good advice on more than just the subjects they taught. They understood that I might be different on the outside, but that on the inside I was just like any other student. Other important people include the ladies in the administration building who always said “hi” to me, and told me they were happy to see me. My speech teacher, Dr. Palmer, was nice, even if she tried to convince me to become a Republican. An exciting memory from this campus is when an MTV camera crew followed me around campus for the show, True Life: “I Have Autism”.

I would like to thank Bruce Cochrane, Director of Pupil Services, for the chance he took and the faith he had in me. I would like to thank the administrators, the school staff, the educators, (including Maureen and Janine), for allowing my voice to be heard. Without you, my life would still be imprisoned in darkness.

Nicely I wish I had made more friends from my years here. Being autistic, that is the hardest part. It is important to include all students in general education classes so they can be with their peers.

When Helen Keller grew up, she graduated from college, became an author, and an advocate for people with disabilities. I hope to do the same.

My real message to you today is:

Teachers, never underestimate your students no matter how disabled they may appear or what difficulties they face.

Parents, believe in your children and encourage them to fulfill their dreams.

Students, give yourself the power to hear the voice inside telling you that you can create the life you dream of. Believe in yourself, and never allow anyone to discourage you.

 

Autism can create stress in couples, what to do?

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?

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