Autism Therapy Site

Lately, I’ve seen a need to address those people who work with young adults with
autism. I recently wrote a chapter for a book which is written specifically for therapists and other professionals who work with this population.  Unfortunately, many of these therapists have little training or experience working with individuals with autism. They don’t know how to talk to them and often don’t know what those with ASD truly want and need. These therapists may spend an inordinate amount of time addressing the feelings of the person with autism and encourage that person to talk until they discover how to solve their own problems.  That’s often what psychologists do. Unfortunately, individuals with autism have a very difficult time problem solving, self-reflecting, and understanding the feelings of others.  They may be experiencing severe anxiety and depression, which is typically inherent in autism, and their anxiety and depression may prevent them from being motivated to change or to care about themselves or others.  This is the first of a two-part article on the wants of needs of young adults with autism and how to treat them.

Young adults with autism are faced with a sad situation when they graduate from high school, usually between the ages of 18-22. Their world changes dramatically because they no longer have the daily structure and routine of school. The loss they feel can be tremendous, since they not only lose their purpose as a student, but even more important they lose their peer relationships and school friends.

Many of these young adults with ASD stay home, often with little to do.  If they can’t or won’t attempt to get a job, their lives may become centered around computer/video games,  online sites and their own peculiar interests. Their dependency on caregivers increases, as well as their egocentric demands .  What friends they have are probably online.  Many of them are unmotivated and may suffer from anxiety and depression. As a result, they often can’t or won’t attempt anything new, such as a job or community college, or any new activities. Change of any kind is hard for them. It’s a bleak future for them unless there are more options to address their wants and needs.

As I’ve said before, anxiety and depression is a huge concern with this population.  Suicide by young adults with autism is at least double that of their neuro-typical peers.  It’s practically an epidemic! Concerned parents may send their adolescent and adult kids with ASD to therapists, psychologists and even psychiatrists to try to help them feel happy, motivated and fulfilled.  But what do these ASD individuals want and need most of all?

It may surprise most people to learn that these ASD adults typically want what everyone else wants.  They want friends and intimate relationships(boyfriends/girlfriends), a job they would be comfortable doing, perhaps more education(college or technical training), and more control and independence in their lives. And many of them want relief from the inherent anxiety and depression associated with autism, which is often keeping them trapped in their homes and unable to get out in the world.

So, what do they want and need:

1. More authentic relationships and real, long-lasting friendships. We all want and need friends, and so do people with ASD.  Many of them are lonely and afraid. Many of them have tried and failed at friendship, but it is still something they want and need.
2.  Intimate relationships–  Most adults with ASD want a boyfriend or girlfriend.  Some will say they want to get married or have a long-term intimate relationship. They need someone who will love them(other than family members) for who they are.
3. A job, a purpose, an activity or interest which is fulfilling to them. Whether they have a paid job or volunteer their help, people with ASD need to do meaningful activities. Playing online games all day can be fun, but it’s not meaningful or ultimately fulfilling.  Eventually, such non-meaningful, selfish activities can result in increased isolation, depression and addiction, and will close them off to others.
4. They need active treatment or therapy to combat anxiety and depression. Anxiety can become a huge factor in their lives, effecting everything they do.  Anxiety and its evil twin depression, cause isolation, fear, overwhelming sadness, lack of motivation and caring, feeling as if you have no control over anything, and suicidal thoughts. If a young adult with ASD is exhibiting anxiety and depression, it’s essential that these problems are addressed before anything else.
5. Opportunities to connect with others: clubs, organizations, classes, teams, and any social opportunities. Social interaction skills will always be a challenge to them, but the more practice they have interacting in various situations, the more comfortable and confident they will become.

I’ll talk more about treatment in my next blog.  Until then, let me now if you have any questions about this topic.

Mary

Anxiety is such an innate part of autism and much of the behavior exhibited by individuals with autism is directly related to anxiety. I wish I knew that years ago when I was first working with kids with autism.  Because kids with autism are anxious! Unfortunately, teachers and adults working with these kids just don’t recognize that anxiety. We see the behaviors they exhibit, and react to their behaviors instead of the underlying anxiety which causes their behavior.

Kids with autism don’t understand their feelings of anxiety and don’t even know how to explain how they feel to adults-even parents.  Even if they know enough to explain it, they likely don’t have the specific language to describe exactly what’s going on with their minds and bodies. They just know that they feel bad and upset, and usually don’t even have the words to say what is upsetting them.

Most of us as adults can usually recognize our own anxiety, and we may even know why we feel anxious. But that’s not typically true of kids with autism. I’ve often said that individuals with ASD need to be able to recognize their feelings of anxiety and identify what causes them to be anxious in order to manage their anxiety. We can’t manage what we don’t understand. But unfortunately, I think this is a long, on-going process, which probably takes years, along with much maturity, experience and self-awareness.

With kids with ASD, it’s up to us as teachers, therapists and parents to recognize their anxiety, identify what causes it, and help these kids understand and learn to manage their anxiety, to the best of their ability. In the meantime, we adults need to recognize and manage their anxiety for them.

When I look back on the students with autism that I worked with, I can now see their anxiety and subsequent behavior, often out of control behavior, with a clearer, non-judgmental  eye.  In the moment, we adults typically react to bad, aggressive behavior, thinking only of stopping or controlling the behavior.  We often assume their behavior is a result of task avoidance, temper tantrums over changes or not getting what they want. We don’t usually see the overwhelming anxiety that initiates the behavior.

I once had a student who lashed out at anyone who got too close to him. He would hit with lightning speed and great force, hurting adults and students alike. Needless to say, it was difficult to work  with him. Adults at school didn’t like this student because of his behavior, and would get angry when he attacked people around him-for seemingly no reason.  What we didn’t see was how scared and anxious this boy was all the time.  He had a difficult time understanding what was going on around him. He was easily overwhelmed and didn’t even have the language or speech capability to tell us he was upset.  Instead of attempting to calm him down and explain things in a way he’d understand, he was punished and isolated.  This was a great disservice to this student, and I’m sad to say the story doesn’t have a happy ending.  When this student got older and stronger, and more out of control, public education could no longer deal with him.  He was eventually sent to a residential placement where he was heavily medicated.

This is not an unusual situation. Many kids with ASD, especially those who are at the lower end of the spectrum and have poor cognitive and language skills, end up in residential placements due to out-of-control behavior.  As adults, we need to take a serious look at the anxiety that drives the behavior of these kids.  Because I’m now convinced these kids all have fear and anxiety.  And overwhelming, sensory-filled situations, with added confusion and poor understanding of what’s going on, only causes their anxiety to hit the roof! And then we see out-of-control behaviors. I now know that my students with ASD love school, love the structure, and all want to do a good job. But their sensory integration issues, confusion, and language difficulties just add to their anxiety and prevent them from doing their best in school.

Anxiety in children with ASD can include many different behaviors. learn to recognize the anxieties of your students and children. Here are some:

• looking anxious, fearful, worried or stressed
• increased self-stimulation-frequency, intensity, and duration(i.e from subtle rocking to frantic, fast rocking)
• a change in their self-stimulation, such as a self-stim behavior you haven’t seen before or typically don’t see
• attempts to block out sensory (i.e: covering their ears, closing eyes, verbalizing or vocalizing loudly)
• shutting down and not responding at all
• increased echolalia, including reciting movie scripts
• increased refusals, negative responses, including negative echolalia, often spoken with agitation
• attempts to escape the environment, or hide
• extreme focus on an activity(as if to block everything else out) and not responding to others
• covering themselves up with blankets, pillows, a jacket or anything
• walking around in circles, walking aimlessly
• not letting anyone get near them
• screaming/yelling or talking loudly
• self-injurious behavior, including picking at scabs, fingers or pulling out hair
• aggression toward others or objects

We need to explain to our children and students with ASD just what anxiety is and work with them to figure out what causes them to be extremely anxious.  We need to help them understand that there are ways to decrease anxiety and feel better. We need to start teaching them self-calming strategies from the time they are young in order that they will continue to learn to manage their anxiety as they get older.

Next time I will talk about ways to manage anxiety for people (young and old) who have ASD. Managing anxiety and behavior is the key to helping people with ASD get out of their comfort zone, make friends, learn new things and be successful in the world.

I’d love to hear about your experiences with anxiety and how you have dealt with anxiety when it happens to your children or students. And I’d love to read your comments about my blogs.

Until next time,

Mary

Anxiety and Autism

People with ASD always have some level of anxiety-period. It’s part of the condition of autism.  Some people will say that it’s the cause of many of the behavior problems associated with autism. When you add confusion, over sensory stimulation, fear, negative thoughts and an inability to respond appropriately to a problem situation, that level of anxiety is going to hit the roof.  This is often what happens to people with autism.  Fear and anxiety and the inability to problem solve causes them to freak-out and do irrational things.  Anxiety limits what people with autism will attempt to do in their lives, including job opportunities, new relationships, exploring their community and trying new things.

There’s a reason people with autism like routine and predictable situations, and why they hate change and anything they can’t control.  Change and unpredictability can cause fear and anxiety. And most people with ASD are battling anxiety constantly-especially when they are outside of their comfort zone and interacting with others. As a result, many adults with autism are trapped in their own homes because they would rather stay in a safe place than attempt going out and dealing with their anxiety. Temple Grandin once said at a conference I attended that she takes medication for anxiety and won’t step out of her home without her taking her meds.  That says a lot for what adults with autism are dealing with, and most of the adults with ASD that I know take some form of medication to relieve the anxiety in their lives.

Unfortunately, anxiety doesn’t just go away and stay away.  People who suffer from anxiety and panic attacks need to learn how to control them effectively.  Sometimes that requires medication, which we know many children and adults with ASD take on a regular basis.  But medication isn’t always effective and furthermore, all medication has side effects.  Although it helps, medication alone is usually not the answer when battling anxiety.  People with autism need to recognize what causes their anxiety and learn to control it, or at least manage it to the best of their ability.  That takes self-examination, acceptance and practice.

Later this week I’ll talk about ways to recognize anxiety and determine what causes anxiety for an individual.  And then I’ll talk about ways to manage/control your anxiety. Anxiety won’t go away, and if not managed it can lead to depression. More on all that later.

Until then, stay positive!

Mary

Discussing the “Birds and the Bees” with ASD Kids

It’s been a while since I contributed to my blog.  As it is I have been busy writing other projects and haven’t had much time to give to this blog.  Teaching kids with ASD about puberty, personal safety, relationships and sex are my area of comfort and expertise.  So here are a few thoughts on teaching kids with autism about sex, and the steps to take before teaching this topic.

Here goes: suggestions from Mary Wrobel

Children develop at their own rates and some need the “sex talk” sooner, while others won’t be ready for it until they are older. Hormonal changes during puberty cause children to become more aware of their bodies, especially sexual changes to their bodies. These changes will eventually lead them to their own sexual awareness, and cause them to have sexual urges. This is true of all adolescents. Usually the onset of puberty is a good time to start laying the ground-work for talking about sex.

• Before beginning any discussions of sex, talk about the changes to your child’s body(everything associated with puberty) and explain why this is happening. You can simply say that his/her body is starting to grow to be a man or woman(like big brother/sister or mommy and daddy). Use a line drawn puberty progression chart, so that your child can see how changes to his/her body will take place over time starting with an age 7 picture and ending with a line drawn naked image of an adult man or woman.
• Establish rules about modesty and touching(touching themselves, touching others, and people touching them). Be sure that your child understands the rules about touching especially regarding their personal safety. The risk of sexual molestation and abuse is high for any student with a disability, including autism.
• If your child is masturbating, be sure to establish rules regarding that(i.e masturbating is personal and private and should only occur if they are alone in their bedroom or bathroom with the door shut). Realize that kids can act on their sexual urges without any knowledge of sex.
• When it’s time to have a sex talk with your child first find out what they might already know. Ask them, have you ever heard the word, sex? What do you think it means?
• Begin discussing sex with what they already know. What your child tells you will be a big indication of what facts they know about sex(if any) and what he/she is able to learn and understand.  You may discover that your child has a lot of false information and ideas about sex.
• When it comes time to explain what sex is, keep your explanation simple. Much depends on the age and comprehension capabilities of your child.  Don’t get too technical or include too much detail. There is plenty of time for that when they get older.
• Also, you shouldn’t explain everything they need to know about sex in one sitting. Instead, have many mini lessons and discussions. And only explain what your child’s attention span and comprehension capabilities can handle. Begin each mini lesson with a review of the last discussion/lesson you had.
• Allow your child to ask lots of questions, and be sure to answer them as simply, clearly and truthfully as you can. Be sure to address issues that your child is especially concerned about, even if his/her concerns may seem silly or inconsequential to you.
• If your child has participated in a sex education curriculum at school ask the school for a copy of that curriculum. You can use the school’s curriculum to guide your instruction and help you answer any questions your child might have. Realize that being exposed to sex education instruction at school does not mean that your child has learned much about sex.  Most school based sex ed instruction for general education classes is condensed and presented in one or two sessions. In other words, your child probably got little out of any school-based general education presentation on sex.  And sometimes it might just add to your child’s confusion about sex. Expect that you will be the one giving appropriate instruction on sex education to your child.
• Use visuals, as needed, with all your instruction. Line drawn pictures as well as photos can be helpful when explaining all puberty and sex education information.
• As your child gets older and needs to know more(definitely by high school), define sex for him/her and help your child understand a broader definition of what constitutes sex.
• Make sure your child understands the rules of sex, such as who can legally have sex, where you can have sex, and when sex is illegal.
• Your child also needs to understand the consequences of sex, such as pregnancy and sexually transmitted diseases.
• Finally, make sure they understand that sex is always a choice, a choice that responsible adults can decide for themselves. No one is allowed to force you or persuade you to have sex against your will. Sex that is not a choice is considered rape, and rape is against the law.

Hope this helps.  If you need more, detailed information I would suggest getting my book: Taking Care of Myself 2

Ask me a question if you have any,

Mary

School is right around the corner. By now, many gen ed teachers have experienced a student with autism in their classrooms. I would imagine if you are a gen ed teacher and you had a student with autism that the experience was eye-opening and you learned a lot from it. But before you pat yourself on the back because you now know how to manage and educate a student with autism, you need to realize that not all students with autism are alike. In fact, students with autism can be very different from each other. Which is why you need to know as much about your new student with autism as you possibly can before he or she steps foot in your classroom. Learn everything you can about him/her and prepare, prepare, prepare. Even given all the knowledge and preparation you can have regarding your new student, it will still be difficult.

I’ve known teachers(self-contained and gen ed) who refuse to ask those important questions about their new student with autism because they want to give that new student a clean slate and an opportunity to start the school year without any judgement or pre-conceived ideas on the part of the teacher.  That thinking is not only wrong, but will likely cause huge problems for the student and the teacher. It’s essential that you learn as much as you can about your new student and have your room and yourself as ready as possible before your student with autism arrives.

Let’s start first with the questions you need to ask of last year’s teacher and the educational team. And do not forget to talk to the parents, because your student’s parents know their child better than anyone. The first step is usually to meet with your student’s educational team(speech/language pathologist, social worker, psychologist, OT, PT, special services teacher and parents). His educational team will discuss goals and supports he will need. Pay attention to what is discussed and don’t assume that this team will take care of the educational needs of the student and release you from any responsibilities.  That also goes for any personal aide your student might have.  You are the teacher and ultimately responsible for your student’s education.

Questions you should ask:

• What are his receptive and expressive language skills, and how well does he communicate? Does he have a communication system other than verbal language?(if so, learn all you can about it fast)
• How best does he learn and what are his educational levels?
• What modifications will he need? Are there any you can provide?
• Does he have sensory sensitivities/sensory integration problems?
• Any food issues? Sleep issues?(many kids with autism are poor sleepers and have a limited repertoire of food they will eat.  These issues can effect their ability to learn)
• How is his peer interaction? Does he have friends in your class? You need to think of ways to connect him with buddies in your classroom.  Most kids with autism have few, if any, friends.
• Does he have allergies or any medical conditions? medications? Is he diagnosed with anything other than autism?(such as Fragile X, seizures, Tourettes, OCD, learning disabilities, etc) Most kids with ASD have other conditions which accompany their autism.
• What triggers his anxiety? What causes any possible meltdowns?
• What are his preferences and needs? i.e: seat location? alone or with others at a table? lighting? noise level? visual aids? structure and routine? transitions? breaks? toys/objects for self-stim?
• What to do you do when there’s a meltdown-what’s the behavior management plan?

All these questions are likely to have complex answers, which you as the teacher will need to know well.  Remember, you need to create a safe and comfortable environment that will allow your student with autism to focus and learn.

As odd as it seems, the more structured and rigid your classroom schedule and the more specific rules you have, the better your student with autism will manage in your class. Kids with autism need structure and routine.  They need to know what to expect and what will likely happen.  They need easily understood rules and consequences.  They need you(the teacher) to be predictable and consistent.  Here are things you can do to help structure your classroom and help your student anticipate and cope:

• Post a short list of simple and specific classroom rules(not too many and not too vague) and explain the rules to him.
• Post the class schedule of activities for each day.
• Post a calendar of special events(field trips, assemblies, etc.)
• Always give a visual heads-up(if possible) if there is going to be a change of any kind(i.e: substitute teacher, visitor to class, re-arranging desks, no math today, no art class, no recess, a fire drill, etc.) never surprise a student with autism. You will learn quickly that they don’t like change, and if you surprise them there will likely be behavior problems.
• Use pictures, if necessary, for all the information you post.
• Find ways to help your student stay organized, on-task and motivated. This may take some creativity on your part.
• Individualize for the needs of your student and be sure that whatever you make and post will be helpful and understood by your student.
• Don’t assume anything.
• Be consistent

Behavior problems are probably the biggest concern classroom teachers would have regarding a student with autism. Learn to recognize when your student is becoming anxious and upset, and try to prevent a meltdown before it hits.  Sometimes distraction, assurance or a quick break will prevent a meltdown.  But sometimes meltdowns still happen.

When there’s a meltdown:

• Remain calm and speak quietly(this is often harder than you think-we all become alarmed and may panic in the moment)
• Make sure your student and everyone else is safe(meltdowns can become aggressive)
• Don’t bombard your student with lots of talking and questions.  It’s hard for someone with autism to process language when they are melting down.
• Sometimes it’s best to say nothing during a meltdown, but when you have to talk to your student be calm and allow for plenty of processing  time.
• Things you can say to your student while he is melting down may include: “I know you’re upset, but we’ll work through this and figure out what to do”, “What can I do to help you?”, “I’ll stay here with you until you feel calmer/better”
• Have a plan for getting staff help, if necessary. During a meltdown a student with autism may need to be restrained by someone who is qualified to do it.
• Have a place your student can go to self-calm and decompress.
• As a processing and preventive tool, have a team member create Social Stories to address anxiety, transitions, meltdowns and self-calming.
• You may need to create a reward system, as well as a task completion and problem solving aides such as:  First This, Then That(for task completion) or If___, Then_____ for behavior and cause/effect understanding. Also, create a picture system to allow your student to express feelings/emotions. Enlist the SLP and social worker to help create these for you.
• After a meltdown, when your student is calm again, figure out what triggered his upset behavior. Ask the student questions or give him choices.  Don’t assume the meltdown is about task avoidance.  Many things can trigger a meltdown.
• At some point you and your student need to create step-by-step self-calming strategies that he can use the next time he feels upset. Self-calming is key; everyone with autism needs to learn this.

I wish the best to all you teachers, support staff, students and parents as we start a new school year. Stay positive! It will be a great year for everyone…especially all those students with ASD.

Mary