Autism & modern love

Jeremy Sicile-Kira

Here is an article I wrote five years ago  – Jeremy was 20 years old. (It first appeared in  Spectrum Magazine). I’m reprinting it here now because it is still as relevant today as it was back then. Enjoy!

Jeremy is quite a catch – he’s buff from working out at the gym, has an endearing personality, and he starred in an award-winning episode of the MTV ‘True Life’ series. Never mind that he is autistic, needs help with everyday living skills, and probably always will. (In my opinion, he should be looking for a traditional wife who will take care of him, instead of a girlfriend, but I digress.)

One night recently I woke up at 3:00 am to find that all the houselights had been turned on. Usually a sound sleeper, Jeremy had been making the rounds. I heard him downstairs and decided to investigate. He was looking through my husband’s collection of architecture books. He found the one he was looking for, Las Vegas: The Fabulous 50s, and flipped it open to the section on strip clubs and showgirls. “Why are you up, Jeremy, what’s going on?” I asked. “I’m thinking about girls,” he replied.

Oh, how I miss the prepubescent years when Jeremy was examining the guitars in the music magazines and not the beautiful models holding them. Although Jeremy has been showing an interest in females for some time, he is now communicating that guitar magazines just don’t do it for him anymore. I long for the days when his choice of reading and viewing materials ran along the gamut of Dr. Seuss’s ABC and Sesame Street when he wasn’t occupied with his school work.

The show that finally got his attention away from Big Bird is Entourage, a HBO series which is a show about four good friends from Queens, N.Y., now living in Los Angeles who try to get laid and avoid relationships in-between acting gigs. There is a lot of eye candy for the guys on here (and the male actors are not so bad-looking either). Dusty, one of Jeremy’s tutors, offered us the DVD of the first season as a gift. Jeremy got hooked. When asked what he liked about it, Jeremy spelled out by pointing to letters on his letterboard, “I like that they are good friends.” So I bought him Friends, which I thought was a little tamer but still dealt with friendships, but after watching two episodes, Jeremy didn’t want to see anymore. Frankly, there isn’t enough female nudity to keep his interest. I guess it wasn’t the male bonding between the main characters on Entourage that he was focusing on.

My main concerns for Jeremy up until now have been: where will he live, what can he do to earn money, what will happen when my husband and I are no longer alive? Not a week goes by when I don’t research the possibilities and create new possible scenarios in my mind. He is now 20 years old, the same age as the young adults I worked with in a state institution for the developmentally disabled years before Jeremy was born (I guess you can catch autism by osmosis). It is one thing to help people with autism and their families with the emotional detachment of a professional; it is quite another to be caring for and planning for your own child. At the end of the day, it is the parents who are responsible, and it is difficult emotionally as well as practically to try and create a future for your loved one. For most parents of autistic kids, just providing the basic necessities of food, shelter and work for them is a constant worry. But loving caresses, physical intimacy, love, and a relationship with someone who is with you because they choose to be (not because they are related to you) are also basic necessities. I am not immune to the sadness embedded in the emails from parents of young adults writing to me for advice, asking for answers, asking me what they should do. How are they going to cope? I feel their pain. My heart aches as it mirrors my own distress. We have barely enough energy to make it through an autism-filled day, let alone plan for the tangible—and less tangible—future needs of our children.

My son learned to communicate by spelling out on a letter board and has been doing it now for about four years. The way he describes what autism is like for him, it sounds like a less severe form of “locked-in syndrome,” similar to what Jean Dominique Bauby, the editor-in-chief of Elle suffered. Bauby had a stroke and lapsed into a coma and when he woke up he could move only his left eye. He wrote his memoir, The Diving Bell and the Butterfly, blinking out a code representing the letters of the alphabet presented to him on a letterboard.

Jeremy is clear about what he feels and thinks. “Being severely autistic means being stuck in a body that doesn’t work well with no way to communicate. People ask: Do I feel emotions? Yes I do, I just can’t show them. Like when my mom helps me I am really grateful, but I can’t get my face to move. You know autism is very different from being retarded and the difference is that nothing seems different to me. I am the same as you inside. I can’t control my body but I am smart.”

Before my son could communicate his feelings, I had no idea how he felt about people and relationships. To look at his body language, which he can’t really control, you would think he does not want to be around people. Yet, he wants to connect so badly with people his own age and he struggles to find ways to communicate this. His quest to connect with friends was effectively documented on MTV: Jeremy masters assistive technology in order to have a voice, yet has difficulty staying in a room full of noisy people at his own party.

On his 19th birthday, Jeremy let me know for the first time that he was unhappy with his birthday presents. When I asked him why, he spelled, “I want a cell phone.” “What do you want with a cell phone? You are nonverbal,” I exclaimed. “I want to text my friends,” he spelled. He sees how adept his younger sister, Rebecca, is at connecting with her friends via text, and he was hoping to do the same. This cell phone business has been difficult. Those little keyboards are not easy considering the visual processing and motor problems my son has. And the only real friends he has (sadly) are his tutors. But I know he is lonely and wants to connect. So he got a cell phone.

Since Jeremy keeps bringing up girls, I suggested he join Facebook and work on his communication skills, as this is important for any kind of relationship. “Do you think I will really find a girlfriend on Facebook?” he asked. “It’s not that simple, but you will meet people and you can connect with others right from home and practice communicating,” I told him. Now, he goes on Facebook about every other day with one of his tutors. He likes to see if he has any friend requests and to comment on what he is doing. What are you doing right now? Jeremy is thinking the girls at the gym are hot.

Mark, one of his tutors, suggested that Jeremy start working out. He took Jeremy to check out different gyms. Once they had narrowed down their search, Jeremy and I went to discuss membership terms. When it came time to ask questions, mine were the usual, “What is the initial membership fee? What will the monthly payments come to?” I asked. Jeremy’s questions at the first place were a bit different. “Are the girls nice here?” he spelled out. “Are they pretty?”

As we arrived at the second place, LA Fitness, the doors flew open and more than a dozen gorgeous, shapely young women came running out. Jeremy was all smiles. We walked in and the receptionist said, “You’ve just missed the Charger Girls!” Jeremy was even happier. The Charger Girls are the cheerleaders for the San Diego Chargers football team. A Charger Girls poster is the only athletic memorabilia hanging in Jeremy’s room. “I like this place! This is where I want to come workout,” he said. Jeremy got straight to the point with the salesman. “Do the Charger Girls really work out here? Are they good at sports? What is their schedule?”

Jeremy joined LA Fitness, and goes there regularly with either Mark or Troy, another tutor. This past Christmas, Jeremy spelled out, “I want to buy a calendar with pictures of girls for Troy.” “Uhhh…okay, ask Janine,” I replied. Jeremy is, after all, over 18. Sure enough, Jeremy went to the mall with Janine (another tutor) and came back with a calendar aptly titled “Hot Buns.” I’ll leave the rest to your imagination. I’m sure he was inspired by the Charger Girls.

When Troy came over the following Wednesday as usual to take Jeremy to the gym, Jeremy gave him the calendar. Now, Troy is an ex-Navy guy, single dad of an 8-year-old girl, and works in a middle school classroom for students with aggressive behaviors. He is not your shy, withdrawn type. However, he looked perplexed when Jeremy handed him the calendar. “Jeremy, thank you, and I’m honored you thought of me, but why are you giving me this calendar?” Jeremy rocked excitedly back and forth and spelled out, “Because you are the best tutor to help my mom understand she needs to find me a girlfriend.” “Jeremy, I know you need a girlfriend, the question is how to find one,” I said. “Troy is the best tutor to help,” insisted Jeremy.

I asked Jeremy what he wants in a girlfriend. “When I think about having a girlfriend I am thinking about sex,” he explained. I asked, “Is sex all you think about?” “That really is not the main thing. I want a relationship. I want to have someone to talk to and laugh with,” he replied.

We have discussed a lot about what it means to have friendships and relationships and the meaning of love and how that is different from just having sex. He is beginning to understand the complexity and difficulty of it. Even without autism, having a loving intimate relationship with another person is not a given. “I think finding love is not easy for anyone. What I mean is that most people greatly search for love but do not find true love. I know this because I frankly see that my aunt is not married and she is a great person.”
I ask him, “What does love mean for you?” “Love for me means that someone likes my way of thinking about life and the same philosophy about living. Love is not a prisoner but it makes you realize that you care about this person more than anyone else.”

I could not have said it better myself.

While Jeremy has his eye on Entourage for inspiration, I have my sights set on another HBO show, Big Love. Having three wives, a three-house suburban home, an extended family and strong community ties – it sounds like a better model for what Jeremy’s future should look like. With three wives, Jeremy would have the love and intimacy he craves, and the women would have plenty of respite. This arrangement would also solve the housing problem and our worries about what will happen when his father and I are no longer alive. For now, I keep searching for ways for him to connect and relate with people, and to keep alive the flame of hope he carries in his heart that one day, he will find true love.

What You Need to Know about Seizures and Autism

Silently Seizing I received the book Silently Seizing a while back and only recently found the time to crack it open – and I’m glad I did! Most people recognize grand mal seizures. However not many know how to recognize an absence seizure, a partial seizure, or a complex partial seizure – they may interpret the odd behavior as a characteristic of autism. Recognizing possible seizure activity is only one of the areas covered in this book which was the winner of the prestigious National Parenting Publications Award. (I like this book so much I also posted about it  on Psychology Today).

This clearly-written book is by Caren Haines, RN who is not only a registered nurse, but also the mother of a 24 year old son diagnosed with autism who suffers from seizures. Caren makes the important point that often times medical professionals analyze the behavior of a person with autism as just being part and parcel of autism, when in fact most of us parents and wise educators have figured out that all behavior is communication. In some cases, a child or teen may be having subclinical seizures and instead of treatment is given a behavior plan.

Caren shares not only how to recognize possible seizures, but describes the helpful data for parents to collect for the neurologist looking to see if a silent seizure disorder is present. As well, Caren shares her son’s experience as well as that of other families, which helps the reader understand more about life with seizures. Dr. Nancy Minshew and Dr. Darold Treffert provide valuable information as well. Also included in the book is a very helpful chart of medical tests to identify underlying causes of autism that may influence the ultimate prognosis of autism.

An important fact that I always tell my audience when I present on the topic of Adolescents and Autism: Many teens on the spectrum who have not been diagnosed as having seizures earlier, develop (or are identified as having) seizures during the teen years – probably related to puberty.

Parents should read this easy-to-digest book to understand more about seizures. It might make a big difference in your child’s life!

 

Practical Training on Adolescence and Autism for Parents and Educators

Teenager:autism.001

Are you a parent (or educator) of a pre-teen or teen? Do you wonder about how, what and when to explain puberty to your growing child?  Are you wondering what an ITP is and how to best prepare your child or student for adult life?  Or do you just think his or her autism is getting worse? Then  this  three-part series taking place on Tuesday evenings September 10, 17, 24; at 6:00 pm – 8:00 pm  PST  (9:00 pm to 11:00pm EST) is for you. This on-line series, will be available from the comfort of your own home (no matter where you live).

Based on the award-winning book, more recent information, and Chantal Sicile-Kira’s popular national presentations, this three-part interactive series on  Adolescents on the Autism Spectrum costs $99 and  includes:

  • The basics on what you need to know when your child or student (of different ability levels) is a pre-teen or teenager
  • Resources for more information on various topics
  • Opportunity for the participants to write in or call in their questions to Chantal.
  • 6 hours of training
  • PowerPoints provided before the live training to help with note taking.
  • BONUS: Opportunity to watch replay of training at a later date (convenient if you miss a session).
  • BONUS: Opportunity to take part in Google+ hangout discussion with Chantal following the series.

Here’s what some past participants have to say about this online course:

“This was so informative. Thank you so much for sharing your knowledge and experiences. I’m looking forward to hopefully meeting with you in the near future.” – Danielle (educator)

“I just have to say that I’ve attended your classes before and I always leave with great information.”  Rachel (parent)

“This is really informative and has just given me lots of things to think about and do.”  Linda (parent)

 “ I’m really enjoying these classes. They’ve been very informative. Thank you.” – Erika (parent)

To attend this class, register here.

September 10: Adolescence 101: The Teen Basics : Everything you need to know (but don’t know who to ask)

Topics to be covered include:

  • 13 things every parent or educator needs to know about teenagers;
  • The general challenges faced by ASD teenagers;
  • Sensory processing challenges in adolescence;
  • Functional strategies to help with daily transitions;
  • Family and sibling concerns;
  • Teaching about puberty, hygiene, self-care, masturbation.

 September 17: Adolescence 102: Relationships: It’s Complicated

Topics to be covered include:

  • The notion of privacy and consent;
  • Relationship boundaries;
  • Introduction to sexuality;
  • Self awareness;
  • Self- regulation;
  • Bullying,
  • Interdependence.

September 24: Adolescence 103: The Transition Years : Plan, Prepare, Practice for  the Real World of Adult Life

Topics to be covered include:

  • Preparing the transition to high school;
  • the ITP- Individual Transition Program and IEPs;
  • Teaching life skills needed for work and / or college including:
  • Self-esteem; Self-advocacy; Executive functioning, Self-reliance;
  • Building on strengths and the use of mentors.

The cost is $99.  To register, go here.

The teen years

The teen years

Resources on Autism and Puberty, Hygiene, Sexuality, Bullying, Abuse

In early October I was invited by the Family Resource Network in Oneonta, New York to present for six hours  on  A Full Life with Autism: Preparing for the Real World.  It was a pleasure to meet everyone there and I promised to post some resources here in regards to puberty, hygiene and sexuality. I have added a few in regards to bullying and abuse as well.

For those unfamiliar with my book on adolescence, there are many resources listed in it on a variety of topics. You might find it useful as a general guide: Adolescents on the Autism Spectrum: A Parent’s Guide to the Cognitive, Social, Physical, And Transition Needs of Teenagers With Autism Spectrum Disorders (Penguin).

Please read descriptions of the following books on-line so you can decide which of the books would be appropriate for your tween, teen or students.

  • Autism – Asperger’s and Sexuality:  Puberty and  Beyond, by Jerry and Mary Newport
  • A 5 Is Against the Law! Social Boundaries: Straight Up! An honest guide for teens and young adults
  • Taking Care of Myself  – A Hygiene, Puberty and Personal Curriculum for Young People with Autism by Mary Wrobel
  • The Girl’s Guide to Growing Up
  • The Guide to Dating for teenagers with Asperger Syndrome
  • Intimate Relationships and Sexual Health

 

Here are some resources in regards to bullying and abuse:

Hope you find these resources useful!

 

Need Information re Teens with Autism? Autism College course beginning Tuesday August 28

Are you a parent (or educator) of a pre-teen or teen? Do you wonder about how and when to explain puberty to your growing child? Are you at a loss about what to explain about the birds and the bees? Are you wondering what an ITP is and how to best prepare your child or student for adult life? Then the course Adolescents on the Autism Spectrum is for you.

Based on the award-winning book, more recent information, and Chantal Sicile-Kira’s popular national presentations, this interactive course will be taught on-line to a small group on Tuesday August 28, Wednesday August 29, Thursday August 30; from 6:00 pm to 8:00 pm PST (9:00-11:00 EST) for a fee. To sign up, go here.  Instructions will be sent to you within 24 hours of sign up.

The cost for the  6 hour- course over three days is  $99.00 and provides:

  • 6 hours of training
  • PowerPoints provided before the webinars to help with note taking.
  • The basics on what you need to know when your child or student (of different ability levels) is a pre-teen or teenager
  • Resources for more information on various topics
  • Opportunity for the participants to write in or call in their questions to Chantal.
  • BONUS: Written transcript booklet from the original live course  provided in March will be provided to those who sign up (a $39.00 value – see description in the Autism College store)
  • BONUS: Opportunity to watch replay of webinar at a later date (convenient if you miss a session).

Topics to be covered during the 6 hours include:

Adolescence 101: The Teen Basics :Everything you need to know (but don’t know who to ask)

  • 13 things every parent or educator needs to know
  • The general challenges faced by ASD teenagers
  • Sensory processing challenges in adolescence
  • Functional strategies to help with daily transitions
  • Family and sibling concerns
  • Teaching about puberty
  • Hygiene and self-care
  • Masturbation

Adolescence 102: Relationships: It’s Complicated

  • The notion of privacy and consent
  • Relationship boundaries
  • Sexuality
  • Self awareness
  • Self- regulation
  • Bullying
  • Interdependence

Adolescence 103: The Transition Years: Plan, Prepare, Practice for the Real World of Adult Life

  • Preparing the transition to High school
  • The ITP- Individual Transition Program and IEPs
  • Teaching life skills needed for work and / or college: self-esteem, self-advocacy, executive functioning, self-reliance
  • Building on strengths
  • The use of mentors

Sign up now to reserve your spot! Questions? Send us an email!

13 Things to Keep in Mind as Your Child with ASD Reaches Adolescence

 Often I get emails from parents who  think their child is getting worse when they hit the double digits.  That’s what it seems like when puberty hits!  So I’m reprinting this article I wrote about adolescence that  first appeared in the Autism – Asperger’s Digest. The article appeared a few years ago, but the worries and challenges faced by parents are the same as they were when I wrote it. I hope you find it useful.

As well to provide an opportunity for parents and educators to have more in-depth information, I’ll be giving a course on Adolescence and Autism here in the  Autism College Classroom on September 10, 17, 24  from 6:00 pm to 8:00 pm PST  (9:00 pm to 11:00 pm EST)   Participation is limited so that participants can have time to ask questions and get advice.  Click here for a description,  Click here forpricing and to enroll. Questions? Email me at Chantal@AutismCollege.com. 

 13 Things to Keep in Mind as Your Child with ASD Reaches Adolescence

0009Living with a child on the autism spectrum day after day, parents often miss the little changes that are so typical of all kids’ development. One day I looked at my son, Jeremy, and realized he was already up to my chin. And what was that – facial hair? His behavior started to change as well. As a young child he’d always been compliant; we spent years trying to teach him to say “no” and mean it. So I was thrilled when he just didn’t want to do what we wanted him to do anymore.

Autism and adolescence: each on their own can be interesting and challenging, to say the least. Together, they form a volatile mix that can arouse daily anxiety in even the most prepared adult. If you live with or work with a pre-teen with an autism spectrum diagnosis, attention to the following 13 points can help you and your child navigate those years a little more smoothly. One caveat: it doesn’t matter the functioning level of your child with autism or Asperger’s; everything here applies. You’ll work them out differently depending upon his or her cognitive, emotional and/or communication abilities, but don’t overlook them, thinking they don’t relate to you child. They do!

  1. Noncompliance: it may not be autism, it may be adolescence. Whether or not they have autism, there’s a definite ‘shift’ in behavior and personality when children turn into teenagers. Wanting your attention changes to wanting their independence. For kids on the spectrum, this behavior change may look like non-compliance; they don’t follow through on your requests as before. But it’s actually a normal part of their development, entirely aside from their autism. As a parent it’s important to support your teen as he struggles to become his own person, and even though it may be hard to appreciate, this is a positive development. After years of being taught to do as he is told, your teen needs to start learning that it is acceptable at times to say ‘No,’ or he might find himself in dangerous situations with peers or others looking for an easy victim to prey upon.
  2. Teenagers need to learn to make their own choices. Giving choices to your growing teen will teach him about decision making and accepting the consequences of his choice (good and bad), as well as help him realize he will eventually have more control over his own life. This applies no matter what the functioning level of the child. Offer him choices, regularly, and abide by the choice he makes. Remember, as he gets older he will want and need to be more involved in his life and his transition planning. By letting him make choices now (within your parameters at first) you are teaching him valuable life skills.
  3. Chores teach responsibility. At any age, it’s good to teach children that being part of a group (whether it is a family, a work group, or a community) brings with it a certain level of responsibility. If your pre-teen has somehow been exempt from chores and group responsibility, let this slide no longer. Teens need to learn that living in a house with other people entails responsibilities as well as pleasures. Chores teach the teen to be responsible for himself, to live independently, as well as foster self-worth and self-esteem. ALL individuals with autism can be taught to contribute at some level. Do make sure your child has opportunities to do so.
  4. Watch out for seizures. One of every four teenagers with ASD will develop seizures during puberty. Although the exact reason is not known, this seizure activity may be due to hormonal changes in the body. For many the seizures are small and sub-clinical, and are typically not detected by simple observation. Some signs that a teen may be experiencing sub-clinical seizures include making little or no academic gains after doing well during childhood and preteen years, losing behavioral and/or cognitive gains, or exhibiting behavior problems such as self injury, aggression and severe tantruming. (Read my post about a useful book here).
  5. Talk to your child about his/her changing body. Imagine how scary it must be to realize your body is going through some strange metamorphosis, you don’t know why and there is nothing you can do about it. Whether your child has Asperger’s Syndrome and has sat through hygiene classes at school, or he is more impacted by autism and you’re not sure how much he understands, it is important to discuss the changing male and female body in a simple way he can understand. Otherwise, your teen may be overly anxious and agitated when she starts menstruating or when he has wet dreams. Visuals that include photos or drawings and simple words may be helpful, especially at the beginning. Be concrete and don’t overwhelm – this is certainly not a one-time talk!
  6. Masturbation: a fact of life. Let’s face it; masturbation is a normal activity that almost all teenagers engage in. Once discovered, it is an activity hard to stop, especially for individuals who enjoy self-stimulatory activities and can be obsessive compulsive, as are many people on the autism spectrum. The best approach is teaching your teen that this is a private activity to be done only in private at home, in a designated place such as his bedroom.
  7. Relationships and sexuality: topics that need to be discussed. Sexuality is a topic that most parents are not comfortable discussing with their children, even their neurotypical teens. However, it is necessary to talk to your teen on the spectrum about sex and the many types of relationships that exist between people. It is naïve of parents to think that because their child has autism s/he won’t need this information. Teens talk, and invariably your child will be hearing about it from their NT peers at school. Whatever the functioning level of your child, he needs to be taught about appropriate/inappropriate greetings, touch and language when interacting with members of the opposite or same sex. Don’t leave this important part of his social-emotional development to locker room education.
  8. Self-regulation is important for life as an adult. An important skill for every teen to learn is the ability to control his or her reactions to emotional feelings and sensory overload. Hopefully, by the time they are teens your child or student has learned to recognize their feelings and impending emotional or sensory overload, and ways to handle the situation. In school this could mean practicing self-calming techniques or signaling to the aide or teacher they need a break and having a ‘safe place’ or quiet room to go to. At home, teens should have their own quiet spot to retreat to when overwhelmed. And parents: respect their need to do so!
  9. Self-esteem is the foundation for success. While children are young, start building this foundation by emphasizing strengths rather than weaknesses. If your child with ASD, no matter what his age, has low self-esteem pay attention to the messages he is receiving from people around him at home, at school and in the community. In all likelihood, the message he is hearing is that he can’t do anything right. Teens need to be told when they are acting, responding and communicating appropriately, as well as that their (considerable) efforts to do so are appreciated. Where there are challenges, it is up to us, as the adults in their lives, to help them find strategies to be effective. Teens can be at high risk for depression. Parents should ensure their teen knows they are valued and loved under all circumstances, not just when they ‘get it right.’
  10. Self-advocacy is required for independence. Eventually your teen will be living away from home and will not be under your protection. He needs to know how to speak up for himself. Start this training while he is in school. IDEA 2004 mandates that students be invited to participate in transition planning and this supportive environment can be good ‘training ground.’ Make sure your teen is aware of his strengths and weaknesses and how he is different from others. In this way the teen can gain a real-life understanding of areas he may need to improve upon or that require assistance from others, and areas in which he is proficient, or that are his strong points to build upon.
  11. Bullying is a serious problem and should be treated as such. Bullying can range from verbal taunts to physical encounters. At any level it is not an individual problem, but a school problem. Unless your child’s school strongly enforces a no-bullying policy from the principal on down, your teen may have a difficult time. Teens on the spectrum are poor at picking up social cues, understanding ulterior motives, sarcasm, and predicting behaviors in others. As such, they unknowingly put themselves in unsafe situations. At other times their unconventional grooming or dress, often stilted language and rule-bound obsessions can render them targeted victims. Ensure your teen learns the meaning of non-verbal behaviors and the hidden curriculum (i.e. the unstated rules in social situations). Enlist the help of a neurotypical teen or sibling when shopping for clothes or getting a new hairstyle so your teen has at least a semblance of ‘fitting in’ with his peer group.
  12. The Individualized Transition Plan (ITP) is your teenager’s business plan for the future. Second only to the early intervention years, the transition years in high school are the most important years in your child’s educational life. Skills your teen needs to learn to survive and thrive as an adult, in adult settings, should be the focus of this time in school. The ITP, mandated through federal special education law, is the roadmap for your teen’s future. Once your child graduates or ages out of high school, mandated services are few and programs have waiting lists that extend into years. Spend time (and include your child as much as possible) thinking about what he wants to be doing when high school ends, and 5-10 years from now. Then plan how he will get there and what skills will be needed. This “futures planning” should drive the goals written into his IEP.
  13. Parents, you need to take time out for yourself; it’s good for your child too. With all the responsibilities you have as a parent of an adolescent on the spectrum, you need to take some time out for yourself. Whether it is a short break you take every day to go for a walk, exercise or engage in a favorite activity, or a weekly evening out with your significant other, you need to recharge your batteries. This is also positive modeling for your pre-teen and teen. It teaches that life can be stressful and overwhelming at times for all of us, and that we need to develop ways to manage our stress, and enjoy life, not just l

Just the other day I was looking around the house for Jeremy. I knocked on his bedroom door. He opened the door a crack, one of his Guitar World magazines in hand. I could hear Dave Matthews playing in the background. “Go away, Mom,” he said, and I did, with a little smile on my face. Jeremy is significantly impacted by his autism. Yet moments such as this remind me that he is first and foremost a teenager, with his own personality, his own wants and wishes. He’s on the road to becoming his own person, figuring things out in preparation for adulthood. I wouldn’t have it any other way.

For more information on Adolescence and Autism, sign up for my on-line course.

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

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.

Puberty brings changes that are difficult for a teen on the spectrum

Most children with autism have a terrible time with change. They like things to stay the same, as they are used to the familiarity of routine. If there are no new things, they don’t have to anticipate for any ‘attacks’ to their senses; they can anticipate what is coming next.  Many like things to be the same and will spend time lining up their toys or objects. Some parents have reported that when they have moved the furniture around, the child will move it back to where it used to be.

Now, imagine that you are the type of person who cannot stand change, that you are afraid of it.  And then you notice something really freaky – your body is changing on you and you have no control over it. It is even worse if no one has told you what was going to happen. Boys start noticing the hair on their legs growing in tougher and longer, and hair sprouting in places there wasn’t any before. Then, they notice their Adam’s Apple has grown and become more prominent, and their voice is starting to change and is cracking at times. Not only that, but something weird is happening ‘down there’ – their penis gets hard and sometimes there is a liquid leaking out. How weird is that??!!
For girls, it is much the same – think of  all the ways a girl’s body changes, and imagine how frightful that could be if you don’t like change.  Especially when the girl begins to menstruate, if no one has explained to her in a way she can understand what that is all about, then she will have a difficult time going through this change towards womanhood.

Some tips:

  • It is best to start explaining to the preteen what bodily changes to expect before puberty hits. For girls, puberty usually starts at age 9 or 10, for  boys at 10 or 11.  However, better late than never.
  • Explain what will happen to both the male and female bodies during puberty, so that the child is not surprised when they see their peers changing as well.
  • Show pictures of trusted , loved adults of both sexes – mom, dad, aunt, uncle – as babies, then children, then teens, then  as adults, so that they see how the transformation has happened to everyone, and that it is a positive thing to go through.
  • Explain the bodily function inherent to being a boy (hardening of the penis, ejaculation) and being a girl (menstrual cycle).If you have a girl on the spectrum, it might be a wise idea to have her wear a pad for a while before she begins her menstrual cycles, so that she gets used to the sensory aspect of wearing the sanitary pad.
  • The use of social stories and a picture book you can create with the above information is helpful. You can then go over the picture book and social stories as often as needed.

The point is, body changes are scary for those who do not like change, but by telling them and showing them the changes that will happen can make it much easier for them. For more autism parenting tips when it comes to teens, you may wish to sign up for our course, Adolescents on the Autism Spectrum. Also, you can read Adolescents on the Autism Spectrum, or 41 Things to Know About Autism.