Article author Iuliia Sezonenko
A practicing therapiest in
sensory integration Founder/CEO in Sensoria

Dancing has been a means of people’s communication for ages and is a unique-universal

language which comes from our body and movements.photo-1464967569081-adaf461b4ea5

In its turn, our body is directly connected with our brain, people have their internal ability to

change their thoughts and behaviour on the neuron level and this helps to improve the psychic

and physical health. We want to assist to setting this most important three level connection

Brain-Body- Behaviour. Building these links is an important basis for every person’s development

but we would like to concentrate on the people with autism spectrum disorders.

The traditional attitude to autistic people is stereotyped. They grasp the reality partially, do not

unite details into the whole picture, they perceive their environment as something they can’t

understand and something that threatens them. To keep themselves safe from the ruining force

of the environment, autistic children begin to protect themselves unconsciously; they block their

channels of perceiving the world around them. This is manifested in such actions as putting

hands on their eyes and ears, as well as in their desire to hide and also in their body tension,

creating a protective shell resulting in their imbalanced tonus, hyper-focused attention and

blocked speech. These are the symptoms when the choreography therapy can be an

irreplaceable helpful means to unblock and activate the body through moving.

Dancing is formed with a range of movement patterns united with music and results in a

complete structure. It is important to point out that the aim of the choreography therapy is to

understand autistic persons at first, to unite with them, and then to help them to arrange their

communication with the world around them. This is the starting point of this therapy direction.

Dancing in the choreography therapy contributes to:

● waking up the basic trust between the therapist and the child;

● developing skills to think in patterns and to remember sequences;

● synchronizing both brain hemispheres;

● sensory gross and fine motor planning and coordination;

● focusing on posture and breathing;

● improving physical and core strength;

● increasing self-confidence, self-awareness and self-discipline;

● developing patience during daily rehearsals;

● improving social skills;

● expanding every child’s artistic expression;

● exploring body – brain connection.

The methodological basis of the therapy is concentrating attention on the unique manifestations

of autistic persons and taking that into account while implementing the therapy which makes it

possible to arrange productive communication.

An autistic person’s strong traits can be described as follows:

● quick-wittedness, dominant nonverbal intellect;

● love to order and perfection, ability to understand distinctly defined algorithms and rules,

to follow them constantly;

● ability to get interested in something extraordinary;

● fine perception of another person’s emotional state, understanding what way they should

behave with different people;

● developed musical ear (in most cases);

● ability to orient in place and time.

The individual movement program of development is worked out taking into account children’s

strong traits and needs, considering their interests. The program contains the description of

aims and basic expected results which will be gained regarding the child and the child’s family,

the list of activities which will help to achieve the basic expected aims, the program

implementation algorithm description. Its duration and the intensiveness of the activities are also

specified in each individual program.

Dancing environment focused on its resources should be based on such key points as:

– safety, namely certain object and space environment arrangement which helps to

minimize the autistic child’s feeling of fear and uncertainty, makes it possible to orient freely in

the dancing space and to perform certain actions, owing to the acquired rules;

– intensity of culturally important objects. The educational environment provides children

with an opportunity to contact constantly with different information media, gives certain

information about the environment, introduces musical instruments remarkably stimulating their

cognitive activity, voluntary and involuntary attention, supports their positive motivation;

– accessibility of the poly-sensor perception. It implies that the educational environment

stimulates and secures the possibility to widely involve the information from different sense

receptors perceiving separate objects as well as their interrelationships.

Taking into account all the above mentioned factors we have a possibility to realize that the

choreography therapy is a reliable base for a person’s further multifunctional development and

formation. The experience of moving according to the common music rhythm unites, inspires

interest and desire to live of all the participants of this experimental activity. We agree

completely with Aristotle and his main idea running through his philosophy that “Life is

movement”.

http://www.facebook.com/sensoria.in.ua

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Burnout is very real in this field, and is common among social service occupations in general.

The work that we do, while extremely rewarding, can also be challenging, frustrating, disappointing, and sometimes dangerous (such as with aggressive clients). Since we are all only human, we are not immune to burnout.

Staff who are experiencing burnout are sloppy at their work, they make careless mistakes, they “go through the motions” without actually trying to connect with their clients, or they are snippy and irritable where they should be patient and persistent.

Sometimes you can’t tell when you are burned out on a client, or on a job, and may think you are just temporarily tired, overwhelmed, or stressed. It’s important to regularly monitor and assess your emotional state, because you won’t be an effective professional when you are experiencing burnout and you also won’t draw satisfaction and joy from your work. Ideally, management/supervisors will be monitoring staff for signs and indications of burnout, and/or creating systems intended to minimize burnout (such as small caseloads). However, I recommend assessing yourself on a regular basis to be sure you aren’t experiencing burnout.

I have learned over the years to monitor my own emotional state to make sure I am far away from reaching burnout levels. I know when to decline clients or refer out, I know when to seek out help or feedback from my colleagues, and I know how to maintain a healthy life/work balance…..but I didn’t start out in this field knowing all of that.

So what are some classic signs of Burnout?

  • Not wanting to go to work, constantly calling in or arriving late
  • Feeling constantly overwhelmed and/or chaotic at work
  • Feeling ill-equipped to perform your job, feeling like you don’t know what you are doing
  • Feeling that you aren’t making a difference….your job doesn’t “matter”
  • Being constantly annoyed or aggravated by your clients/co-workers
  • Productivity decreases…it takes you several minutes to start a task or you find it difficult to stay on task

Knowing yourself and your own preferences or needs as a professional will help you carve out a niche that works for you. Being mismatched in your career is an almost guaranteed way to rapidly slide into burnout. Let’s say I love working with adults in residential settings, but then I take a position working in a K-2 Autism classroom. See what a mismatch that is? I’m not doing what my preference is, I am not working within my skill set, and I may not enjoy my work. I would feel a lack of professional autonomy, or that I am not in control of my career and doing what I want to do. Over time, I may begin to feel that I hate my job……I dislike my clients……or what I do doesn’t matter anyway. These are all classic signs of burnout.

So what can be done to prevent the dreaded Burnout? Lots of things!

  1. Active parental involvement- I will continue to say this over and over on my blog, because it is so critical. When staff are working hard to bring about lasting behavior change in a client, only to have successes derailed or see gains disappear due to no parental carry over, that can be an extremely frustrating feeling. Staff can quickly grow to feel as if they are building sand castles on the shore, if after their session is over no one else is requiring the child to talk, to use the bathroom, to share with their siblings, etc.
  2. Supervision & Support- All ABA professionals need support, including BCBA’s. Having a few colleagues you can go to for venting purposes or to pick their brains is so important. Lack of quality and regular supervision is one of the biggest indicators I see that leads to staff burnout. ABA direct staff absolutely needs an experienced supervisor working with them to make sure they have the support and resources they need to do their job effectively.
  3. Effective training- This is probably the 2nd biggest issue I see that leads to staff burnout. When staff are quickly hired, thrown into the field, and given minimal ongoing supervision, they have no confidence in their abilities/skills. Lack of confidence leads to low job satisfaction, because no one wants to feel like they are bad at their job. Effective training is empowering. It makes people feel better equipped to do their job.
  4. Recognize your area(s) of expertise- This is something I definitely grew to learn over time, but knowing your ideal work setting and ideal client will increase job satisfaction. Not everyone enjoys working with small children. Not everyone enjoys working with high functioning teens. Working within your area of expertise doesn’t just help you to provide the best quality of service; it keeps you enjoying your work.
  5. Low pay- Ask for the level of pay that you need to support yourself, and your family. I see so many new ABA therapists accepting pay rates that are far below what they need, for fear of not being able to find something better. You have to know how to sell yourself in an interview and demonstrate competency in your work, which can often lead management to agree to higher pay rates. ABA therapy can be a physically and emotionally draining job. If on top of that you also can’t pay your bills… that’s a sure recipe for burnout.
  6. Toxic work environment- A toxic or negative work environment will severely impact how much you enjoy your work. I have had past experiences of working with verbally abusive families, or egotistical supervisors, and it really made me dislike my job. I had to be mature enough to realize that I can’t function properly in a toxic environment. If there is consistent dysfunction in your work place, it may be time to leave.
  7. Inconsistent management expectations/client expectations- When the supervisor or family you are working with are constantly demanding more and more of you, yet never satisfied with the work you are putting out, that’s a quick way to slide into burnout. It’s frustrating and defeating to feel that you can’t please someone no matter what you do.
  8. Poor or NO data collection- Some therapists don’t realize this, but consistent data collection can actually serve as positive reinforcement. You may FEEL like the child is not improving, or that what you are doing is not effective but when you can see on a data sheet or graph that small successes are happening, that can be a huge source of motivation. If your client used to scream for 11 minutes and now they scream for 9 minutes, that is progress. Clearly something that you are doing is working, and is having an impact on the problem behavior. I also personally recommend collecting data when dealing with resistant or uninvolved parents. This has helped me immensely in the past. If a parent who used to only respond to my emails 25% of the time now starts responding to my emails 45% of the time that could really make me feel increased job satisfaction. Sometimes little successes are all you have, and they can keep you from feeling defeated.

http://www.iloveaba.com/2014/04/preventing-burnout.html

 

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st summer, eleven year old Brynjar Karl set out to build the biggest Lego ship the world has seen—a replica of the Titanic itself. As we learned when we paid him a visit, autistic Brynjar is a remarkable kid fostering some high goals and big ambitions—after six months and 56,000 Lego bricks and untold hours of toil, it’s safe to say the results are amazing. With only about 5,000 bricks to go, the 6.3metre long Lego-Titanic is getting massive in scale, as you may see for yourself in the accompanying video.

Brynjar has always been infatuated with the Titanic but what inspired him to make this dream a reality? “I uploaded a video to YouTube, asking if I should build the Titanic, and Lego saw the video, contacted me and told me that they wanted me to build the ship,” Brynjar says. “When I uploaded the video I had no clue that this would actually happen.”

The ship was designed by his grandfather and is as close a replicate of the original as is possible. During our visit, we learned that Brynjar’s ambition knows no bounds—when he finishes the project, he plans to either display the finished product in a museum, or create his own “Lego Iceland,” featuring the Lego Titanic as crown jewel. “It depends on if I get permission from my mom, and if I can raise the money… Such a place would be really expensive to establish,” Brynjar told us, smiling at the thought.

Brynjar plans to finish the construction sometime in February, but the ship will go on display at the Smára Tívolí in Smáralind in a few days time. Incidentally, Brynjar’s celebrates his birthday on January 20, and he plans to celebrate by visiting the Tívolí with his class, to see the ship and have some fun.

If you want to take a look at the ship, help Brynjar with the construction or just follow him on his journey, go like his Facebook Page already!

http://grapevine.is/culture/design/2015/01/15/an-autistic-eleven-year-old-is-building-the-worlds-biggest-lego-ship/

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It is not practical to try to give a single set of instructions for every family in every home with every child with some degree of autism. Not only is each child a unique individual with distinct requirements, but there are also many differences among families, homes and cultures that would make this task impossible.

However, it can be helpful to clarify certain principles about the effects of the environment on children with autism, which parents can consider and modify for their own child, home and culture. That is the purpose of this article.

Attitudinal Environment

Optimum Home Environment for Children with Autism Spectrum Disorders photoIs your home a happy home? Is there a high level of stress? Do the people who surround your child tend to be uncomfortable or tense? Or is the predominant attitudinal tone one of ease, security, warmth and good feeling?

I once posed this question to a woman named Carol, the mother of two children with autism. Her reply was “Oh my gosh, I have so much to take care of, do you mean I have to fix that too?” She heard my question as adding to a long list of “shoulds” and “have to’s” which already overwhelmed her. She saw the issue of attitude as another yardstick with which to measure herself and come up short. She was already feeling strained, stressed and barely able to cope.

Carol had very understandably fallen into a trap. In her beautiful effort to do everything for her children, she was not focusing on herself and her own good feeling. She was exhausting herself doing all of the things that she was sure had to be done. She was more and more stressed and operating on the very edge of her ability to cope. The tension and irritability that resulted could be perceived in her voice, her facial expression, her body posture, etc.

How was Carol’s growing stress affecting her sons, Sean and Jonathan? Sean was doing the opposite of what he was asked more and more frequently. Jonathan was increasingly involved in his self-stimulating rituals. However, as Carol focused on reducing her level of stress and creating more time for relaxation, she changed the attitudinal dynamics in the family. Almost immediately there was a corresponding change in the behavior of her sons. Sean became less oppositional, and Jonathan grew more interactive.

Some people believe that children with autism are so encapsulated that they do not have any awareness of the feelings of the people around them. I do not believe this is so. For 30 years, I have had the opportunity to observe hundreds of parents and professionals work with hundreds of children with autism. After observing these adults, I generally ask them detailed questions about their attitude and comfort level. Patterns are often evident immediately.

In my experience, children in proximity to adults who describe themselves as stressed or uncomfortable tend to react with one or more of the following behaviors: an increase in either the frequency or intensity of self-stimulating rituals, more oppositional and challenging behavior, decreased responses to requests, decreased eye contact, decreased smiling and more neutral facial expressions. I have often observed children whose motor planning ability appeared to reduced (which is generally the case when a child is stressed) and observed differences in speech, such as more repetition, less articulation, more “psychotic” talk, etc. Many children also appear more agitated and stressed when they are in the same room with adults who describe themselves as uncomfortable.

increase social interaction child autism photoOverall, the children I have observed have tended to decrease their social interaction when the adults who were with them felt stressed or uncomfortable. The children appeared less motivated to interact, and some children even indicated this through such actions as leaving the room, covering the adult’s head with a blanket or putting the adult in a corner with their back turned! One girl recently packed up the bag of a highly stressed new therapist, put the bag outside the teaching room, then returned to take the therapist by the hand and escort her out the door, then returned to the room and closed the door, leaving the therapist outside!

In the course of my experience training parents and professionals to develop more clear, comfortable and positive attitudes, I have also observed many children with autism respond in remarkable ways to changes in the attitude of their parents or teachers. For instance, on innumerable occasions, when the uncomfortable adult left the room, and was replaced by an adult who felt relaxed and comfortable, the child’s behaviors and responses quickly reversed (sometimes within minutes), and the child became more socially interactive, motivated, etc. In many cases this occurred even when the previously uncomfortable adult returned, feeling more relaxed and comfortable. The children often appeared to me to be quickly “forgiving” of the previous discomfort.

Here are some suggestions to help create an optimum attitudinal environment for your child:

1) Start with yourself and your own level of emotional comfort. That is all you really have direct control over (yes, you do.) If only one person in the family system becomes more comfortable, the entire family system is affected.

2) Become more “selfish”. This seems like an odd thing to say. Prioritizing your own physical, mental and emotional well- being is one of the most important things that you can do for your family and for your child with autism.

3) If you have no time for yourself, find a way to get time. Let go of something. Ask for support. Try asking family members, friends or neighbors to relieve you by spending time with your child. Hire a helper if necessary. Make this a priority.

4) Consider getting help from a professional counselor for yourself, or with your spouse. This is especially important if the stresses and tensions are high, or if you find yourself severely depressed, frequently enraged (once a week versus once every few months), or hitting (or wanting to hit) your child. There are many styles of counseling. Find someone who will help you deal constructively with your feelings and change your feelings – not simply ventilate them.

5) You don’t have to be in extreme discomfort to benefit from some form of counseling. Consider getting support if you are generally comfortable, but feel that you could be enjoying yourself and your family more.

6) Notice how you feel after you talk to friends and acquaintances. If you find that you feel discouraged, less confident or tired after speaking to certain people, then consider decreasing your time with them. If you notice that you feel more positive, more confident or more energized, after speaking to someone, then treat that relationship as a valuable resource. Spend more time with that person. Prioritize relationships that help you feel empowered and inspired.

7) Minimize your child’s contact with extremely tense or uncomfortable people. The people that your child experiences will help to shape his/her beliefs and feelings about interacting with people in general. Do your best to surround your child with comfortable, happy people. Consider eliminating stressful environments and people from your child’s life, at least temporarily while your child is developing skill and confidence with people. Consider coaching or training the people who come into your home, to help them be more comfortable with your child.

8) Do not get uncomfortable about other people’s discomfort. Your child may be more influenced by your attitude than that of other adults. If someone is uncomfortable, focus on accepting them and realizing that they are doing the best that they know to do. If you practice this and get good at it, you will feel better, and interestingly enough, the people in your environment will be more likely to feel relaxed in your presence. All of this will tend to give your child a more positive, relaxing environment.

Sensory environment

Many children with autism have sensory differences, particularly hypersensitivities involving one or more senses. It is a good idea to be aware of the sensory environment and how it might affect your child.

Sound

Background sounds that most people tune out might be at the forefront of your child’s awareness. Background music, machine noises, traffic, wind and nearby conversations might all be drawing your child’s attention. At those times, your child might make less eye contact, and be less focused or less interactive. As much as possible, find ways to minimize the background noises – especially when you would like to engage your child. Turn off the television and ambient music, run the dishwasher after your child goes to sleep, consider placing sound-reducing materials in places where you would like to have focused time with your child.

There are some children who are so sensitive to certain sounds, that they will appear disturbed, tantrum, whine, cry or cover their ears, when these sounds occur. If this seems to be the case with your child, it is important to notice whether she/he is sensitive to particular sounds, volumes or pitches. You do not have to eliminate these sounds altogether from the environment, especially if it involves the sound of someone’s voice.

Try introducing the sounds as part of the play when your child is relaxed and having fun. Give your child control over the sound by linking it to one of their actions. For example, Ryan loved to be tickled. He was also sensitive to his Dad’s laughter when he laughed loudly. So his Dad tried never to laugh loudly. I asked Ryan’s Dad to increase the volume of his laughter during the tickling game. When Ryan said, “tickle,” he got the tickle and the laugh. Then Dad would stop and wait for the Ryan to say “tickle” again. When he did, he again got the laughter and the tickle – both now associated with fun and control. Ryan continued to ask for “tickle” and became less sensitized to the sound of loud laughter.

Visual Over-Stimulation

Visual over-stimulation is also a consideration. In many of the classrooms that I have visited in the United States and in the United Kingdom, the walls are literally covered with words, letters, objects, colors, posters, etc. The belief is that the children will learn latently by looking at the walls, even if they do not look at the teacher. This thinking can be counterproductive for children with autism. Eye contact tends to decrease in such a visually busy environment. The environment competes with people for the child’s attention. In places where you would like your child to pay attention to people, minimize the number of items on the walls.

Lighting

Lighting can also be important. Fluorescent lighting (unless it is a high speed ballast) is a pulsating light. Many children tire quickly, show diminished eye contact and have shorter attention spans in rooms with fluorescent lights. These children do better with incandescent lighting. There are now high-speed ballasts for fluorescent lights that minimize the pulsating effect, but it is not yet clear if they are effective. We are also not sure about the impact of compact fluorescent bulbs. Sometimes, it is best to try different lighting, see how you feel with it and how your child responds.

Color

In addition, colors can have an effect. Observe which colors your child notices most and use these colors judiciously. For example, suppose your child pays more attention to bright primary colors. You might remove items with these colors from the walls and eliminate them from your child’s wardrobe, since your child may pay more attention to the walls or their own clothing than to people. But when you want your child to pay attention to you, try wearing a hat, shirt or face paint in the primary colors or introducing new activities using these favorite colors.

The House as a Minefield

how to arrange your home for child with autism photoHow often do you find yourself saying, “No – don’t touch that!” “Don’t go in there,” or “Leave that alone!”?

If you are saying these things frequently, then the environment may be a kind of ‘minefield’ for your child. Children who are intrigued by strong reactions from their parents will repeat the unwanted behaviors to get the interesting reaction. Other children, who are more prone to withdraw, will tend to explore and play less and be less motivated to interact with you, if you frequently tell them “No”. Either outcome is undesirable.

Consider locking the items that you do not want touched in drawers or closets or placing them in storage for a few months while you work to gain your child’s cooperation. Again, consider your own comfort and be reasonable.

One family displayed their valuable china dishware in a glass cabinet. Their daughter was becoming more and more intrigued with these items. The more she tried to explore these fascinating and special objects, the more she was told “No”. The more she was told “No,” the more interested and determined she became to get her hands on the china.

To break the cycle, I advised her parents to put the china in storage for a few months and put some inexpensive dishes that they did not care about in the cabinet. They let their child handle (and drop) a few of those dishes, and they had no particular emotional reaction (“charge”) to these events. Having thoroughly investigated the dishes, and in the absence of any strong, exciting reactions from her parents, the girl quickly lost interest in the dishes. She showed no special interest, even when the good china was returned to the cabinet some months later.

In parenting a child with autism, establishing communication and rapport is a primary goal. Locking valuable or unsafe items away can eliminate situations where you have to say no or discipline your child, freeing you to interact with your child in more comfortable and user-friendly ways.

Locks can be seen in two ways. Some people associate locks with jails. Others see them as protection. Consider viewing locks as a means of making your home a safe place for your child’s exploration. Notice whether your child experiences tension with his/her siblings over the siblings’ prized possessions. If this happens, consider giving your other children a special way to lock up their valuable items.

Also, you must control access to reinforcing items and experiences. If your child can access these things freely, they will have no need to communicate or to cooperate.

The Playroom

Consider creating a playroom in your house, or at least having an area where you can encourage your child to focus on you and whatever you present to them. The playroom could be a bedroom at night and a playroom during the day. If you do that, I recommend using a mattress on the floor as the bed, and removing it during session times.

If your house is large enough, it is ideal to dedicate one room to be used for your work with your child. The room is designed to enable you to be the focal point and to provide an environment in which you can most easily use your time with your child to help him/her develop communication and interaction. In a special playroom, there are no distractions drawing your child’s attention away from you (or yours away from your child). There should be nothing in this room that you have to say “No” to.

Here is a list of suggestions about the playroom:

1) For most children, a room about three meters by three meters is sufficient. Size is discretionary – if your child is small and the room is really large, it can defeat the purpose of trying to create a more focused environment. If your child is large, you will both want more space for movement.

2) Minimize visual distractions. Put the shelves up high so that toys and other items are out of your child’s each and not at eye level. Your child will then need you to reach them, thus providing more opportunities for communication. Do not use patterned wallpaper. Paint the walls a light, neutral, pleasing color.

3) Include a table that can be used as a desk, and a chair in the room. We recommend using a table that is standard table height, and a Stokke Tripp Trapp chair that can be adjusted for your child as they grow. There are a number of advantages to this kind of seating arrangement.

4) Consider putting a covering on the windows that admits good light, but eliminates the view outdoors and decreases your child’s interest in staring out the window. The rough Plexiglas that is used in shower stalls is ideal.

5) If possible, choose a room with an adjoining or nearby bathroom, so that trips to the bathroom don’t become long and distracting expeditions.

6) Use comfortable lighting.

7) A padded floor is safer for certain kinds of play. This will also be more comfortable for you, as you may be spending time on the floor or on your knees. Consider putting linoleum over padding. There may be spills – and it is nice to not have to worry about wet carpet.

8) Be sure to have the items that you will need in the room at the beginning of every session, such as food, drink, toys, books and activities that correspond to your current curriculum. If your child asks for something, you can then run to the shelf and get it, without having to leave the room and disrupt the session.

9) If you are running a program several hours a day primarily using the playroom, consider some means of observation – either a one way mirror or a CCTV or both. One way to do that is to take the existing door off and store it. Mount a new door and cut a window opening into it. Mount a one way mirror. (Be sure to use tempered glass or some form of safety glass.) A listening device can be installed – even a baby monitor. If you use CCTV, this can be wired into your house television. Some people can switch on the playroom action in any room that has a TV. Also, this allows for video recording of sessions.

One final, but very important consideration is to make the environment that you create for your child a comfortable place for yourself too. None of these suggestions are rules. They are guidelines and basic principles that you can adapt for your child, yourself and your unique family and cultural circumstances. Have fun!

Copyright © 2012 Steven R. Wertz

http://autism-programs.com/articles-on-autism/optimum-home-environment-for-children-with-autism.htm

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Michael Moscariello, 32, looks out through the front door of his Cambridge apartment complex. Michael is on the autism spectrum, as is his younger brother, Jonathan. “[My sons are] the pioneer generation” for children on the spectrum, their father, Pete Moscariello, says. (Jesse Costa/WBUR)

“Mom, Dad, what’s wrong with me?”

Michael Moscariello was a smart, thoughtful 10-year-old when that question burst out one evening before dinner.

He knew from kids at his school in Reading that something was not right. His parents knew too; they had a diagnosis. But it was a condition that almost no one had heard of — not doctors or teachers, and certainly not friends or family.

That night, Michael’s parents used a classic diversion tactic. “Nothing’s wrong, nothing’s wrong, everything’s fine,” Michael remembers them saying. “Do you want to get pizza?”

“[My sons are] the pioneer generation” for children on the autism spectrum.

– Pete Moscariello

May Moscariello, Michael’s mom, had taken him to Franciscan Hospital for Children in Boston three years earlier, in 1988. “They evaluated him and came up with Asperger’s syndrome. It was their first case,” May says. She remembers a doctor telling her that Asperger’s was a hot topic in London at the time. The doctors “gave me a lot of written material from England,” she says. “None of it mentioned autism.”

Today, Asperger’s is folded into the broad diagnosis of autism spectrum disorder (ASD). This includes people like Michael who are bright and articulate, but can’t understand the look that says, I’m serious, or that hint of sarcasm in a friend’s response, or why people back away during a conversation. One in 68 children in America has an autism spectrum disorder.

Michael, now 32, is on the spectrum, as is his younger brother, Jonathan, 29, who has a sort of catchall diagnosis of pervasive developmental disorder not otherwise specified. Their lives, as adults with autism, raise troubling questions about whether the flood of children receiving this diagnosis will find meaningful work, safe housing and networks that will help them become happy and productive adults.

“[My sons are] the pioneer generation” for children on the autism spectrum, Pete Moscariello says.

Being The 1st Child With Asperger’s — Over And Over Again

The Moscariellos’ pioneering journey with autism began with Michael. His childhood was a series of “dead ends, many, many dead ends,” says May, a small, fit woman who coaches amateur figure skaters.

At first, she thought Michael could be happy at the local elementary school. One person on staff had read a little bit about Asperger’s. Teachers who weren’t familiar with Michael’s condition still “bent over backwards to try to help,” May says. Through trial and error, teachers figured out how to avoid the emotional outbursts that could ruin Michael’s day. He could handle two setbacks, teachers realized, before he would explode.

“I don’t know how they did it, if they had walkie-talkies or what,” May says, but the teachers would know, “OK, one more disappointment and he’s going to blow.” Michael could have stayed in the public elementary school and succeeded academically, May says, but socially, he was miserable.

The Moscariellos went looking for options. It was hard to find a place where Michael’s awkward social skills and emotional outbursts would not make him a target of ridicule, and where the goals went beyond learning to read, which Michael started doing at age 3.

The Moscariello family (Michael is at left, Jonathan is at right) at the wedding of Brian Gordon, Jonathan's mentor (Courtesy)

May remembers constant phone calls to doctors, researchers, her insurance plan and other parents. She and Pete drove for hours on weekends to the homes of other families who had young sons with Asperger’s, “because all these kids want to feel is that they belong,” she says. “[None of the] medical stuff is really going to help them as much as having a friend.”

Michael found friends. “We’re still searching for that for Jonathan,” May says.

May shudders, remembering the times she punished her children for doing things that she realizes now they did not understand were wrong.

One hot day, May asked Michael to pull down the curtains. She meant shades, and “pull down” was not the right phrase to use with a child who takes words at their literal meaning. Michael ripped the curtains right off the wall and was beside himself when May yelled for him to stop.

Michael spent six years at a Lexington special education program for students with learning disabilities. But Michael longed to go to what he calls a “regular high school.” So he went back to Reading, where his dad was head of the math department and the baseball coach. The school built a program for Michael and he persevered.

“I was very proud of myself. I didn’t think I was going to be able to do it,” Michael says. But a friend in Lexington told Michael, “’I believe in you.’ Next thing you know, I started straightening up my act, getting more control over my emotions.” Michael says Dave, the friend, “saved my life.”

Michael graduated from Reading High School at age 22. A federal law, the Individuals with Disabilities Education Act, requires that schools provide appropriate programs for students, including those on the autism spectrum, until they are 22. Some students stay in high school until they “age out” because they need extra time to complete graduation requirements. Others delay graduation because once they leave school, their access to special education programs ends.

“There is no entitlement to adult services,” says Susan Parish, a professor of disability policy at Brandeis University.

One recent study found that more than half of young adults with ASD had not moved on to higher education or had a job, two years after they graduated from high school.

“We knew from talking to parents that outcomes are not great for lots of kids on the autism spectrum when the leave high school,” says Paul Shattuck, the study’s lead author and an associate professor at Drexel University’s Autism Institute. “We were kind of shocked at just how not great things were.”

Michael had a mentor, training in social skills and a daily routine that all ended when he turned 22. He and his parents began the next leg of their pioneering journey, searching for ways to help Michael become a happy, productive adult with Asperger’s.

For Michael, The Perils Of Life On His Own

Michael Moscariello works on an anime character PVC model in his apartment. (Jesse Costa/WBUR)

The Moscariellos spent about $40,000 each year for the next five years after high school, sending Michael to residential programs where he learned how to grocery shop, cook, manage a bank account, apply for jobs and live outside his parents’ protective home. There are no low-interest college-type loans or tax-free savings plans that cover these programs for young adults with disabilities. That may change if bills pending on Beacon Hill or Congress pass.

The legislation in Massachusetts would also lift an outdated restriction on disability benefits. Right now, no one with an IQ above 70 qualifies; both Michael and Jonathan score well above 70.

But they need help, a lot of help, with their social skills. Michael worries a lot about losing friends. He doesn’t want to repeat mistakes he made as a young adult.

“There was a girl I was friends with,” Michael begins. “Every time I saw her, I’d just have to go over and talk to her. I’d be like, ‘Hey, it’s me, let’s talk.’ ” Michael realized he was “talking her ear off” and perhaps missing some clues about whether the young woman enjoyed the conversations. He was devastated the day that young woman said, “Stay away from me, I don’t ever want to speak to you again.” Another friend helped Michael understand what he’d done wrong.

“Sometimes just saying hello is more proper than stopping to talk to everyone I know and see all the time. People got stuff to do. That’s how things work,” Michael says. “I didn’t know any of that.  Finding out hurt, but I took it as a learning experience.”

Michael’s parents call him a worker bee. When he has a setback, he tries again with a different approach. Michael must learn the rules for executing everything from a casual hello to close relationships, practicing steps that many of us take for granted.

Michael’s parents speak to him almost every day and see him once a week.

After five years in residential programs, Michael told his parents he wanted to get an apartment on his own. May and Pete worried that someone might take advantage of their son.

“Michael’s loving and giving and trusting of everybody, that’s the danger,” May says. “He’ll say to me, ‘I’m good mom, I’m safe, I’m fine,’ and I would say, ‘Yeah, until you’re dead. So wake up.’ ”

That conversation happened after Michael told his parents that he’d been bringing people he didn’t know very well back to his apartment, people who needed a place to stay. No more, his parents said, or you’ll give up the apartment and move back home.

Michael’s apartment is partially subsidized by the city of Cambridge and the state. He gets Social Security assistance, based on his disability, which covers most of his expenses. He’s on food stamps and Medicaid. His parents help with about $300 a month.

Michael is working on a book about his experience with Asperger’s. (Read some of his writing.) He also writes science fiction. “Star Trek” and various superheroes have pulled him through many difficult moments. When he was the only kid who didn’t get picked for kickball, he’d wander into the woods and imagine himself saving people. Today, he and his brother both love dressing up as superheroes and going to conventions where they can socialize with like-minded superhero devotees, and feel as fearless as their characters.

‘I Want Actual Job Satisfaction’

Michael has not been able to find or hold a job that he says is worth his time. He’s had internships in bookstores, volunteered in animal shelters, and worked at Toys “R” Us, Walgreen’s, a Web hosting company and a grocery store bagging items.

“I had to stand at the edge [of the counter] and wear this stupid apron and say ‘Paper or plastic?’ so many times that the words lost all meaning,” Michael remembers. He wasn’t allowed to talk to people, something he loves to do, “because if I tried, it was like, ‘You’re holding up the line.’ ”

For two years Michael saw a job counselor at a state agency for disabled adults, but he says everything they suggested was menial work.

“I don’t want to sort through huge piles of batteries,” Michael says. “I want actual job satisfaction.”

He meets once a month now with a jobs counselor at a different agency. In the meantime he plays video and board games a few nights a week with friends, and he writes.

“Mike’s a success story,” Pete, his father, says, “but it’s been a tough road and it’s always going to be.” His parents, who are in their early 60s, remind Michael that they won’t always be around.

“I feel like the window is kind of closing here in terms of getting him everything he needs to be able to live a happy life,” Pete says, pausing to let a wave of emotion pass.

Pete is optimistic that Michael will eventually find the right job. But who will keep an eye on his son? The Moscariellos have a daughter, but Pete says he’s determined to let her have her own life, and not expect her to take care of elderly parents and two brothers with autism.

“As we look for lifelong support for Michael, we don’t know where to turn,” Pete says. “That’s the scariest part, the day-to-day worry I know my wife and I suffer through.”

Worry Increases With Jonathan

Jonathan Moscariello, left, and his mentor, Brian Gordon, chat while standing in line to order breakfast. (Jesse Costa/WBUR)

At age 3, when Michael’s younger brother, Jonathan, started to read, May cried.

“That was my cue. I knew I was in trouble,” May says.

There were other signs of autism: Jonathan was obsessive, anxious and prone to temper tantrums. He would be another exceptionally bright boy, May imagined, struggling against a world he could not navigate and that would not understand him.

The brothers are different. Jonathan is three times more anxious than Michael, May says. Jonathan went to several different schools before graduating from Reading, at the age of 21. But he was too afraid to try the residential programs that helped Michael learn to live independently.

“We couldn’t make it happen without,” Pete pauses, “throwing him off the deep end, you could say, and letting him swim.”

While Michael was still in school, the Moscariellos brought one person after another into their home, trying to find someone who could draw Jonathan out of himself and the house. Finally, a mentoring agency sent Brian Gordon.

“He saved my son’s life,” May says of Gordon. He worked with Jonathan three times a week. Jonathan started playing the guitar, they would go out to eat, and Jonathan got a job.

Then Jonathan turned 22 and, like Michael, he aged out of state services.

“Jonathan was left in a world without Brian, and the world fell apart. There was no one there to support him,” May says.

Jonathan had a disagreement with a customer at his job. He lost his temper and was fired. Now, May says, he’s too afraid to work again. The family hired Gordon on their own, with more limited hours. Jonathan, seeing Brian outside the mentoring agency, decided that Brian should become his friend. Jonathan didn’t want to work on any of the life skills Brian thought he needed to tackle. Brian pushed back with new rules for their visits. These days, the two see each other weekly. It’s one of the few times Jonathan leaves his parents’ house.

The transition from high school into the adult world “is often catastrophic” for young people and their families, says Parish, the Brandeis professor of disability policy. “With the prevalence of autism, we’re talking about thousands and thousands of individuals across the U.S. who, when they leave high school, face a dead end.”

Parish says it’s such a waste. “Denying these individuals their chance to participate in society, civic life, communities, is just a terrible thing to contemplate.”

But creating the right opportunities will be costly — for parents or for taxpayers.

Pete and May have looked at expensive day and residential programs for Jonathan, but so far he refuses to consider them.

“Jon’s very articulate, very bright and he writes well,” Pete says. “He’s got a sense of humor. But his anxieties and fears have just hamstrung him to the point that we’re not progressing right now. That’s our day-to-day worry.”

May, who says she’s the stricter of the two parents, tells Jon, “We [your dad and I] only have 20 years left. You’ve got to get your [act] together. We’re on borrowed time.”

May does not blame Jonathan. “The end of the story is that my kids were crushed socially, by the world,” May says.

Pete says the next generation of kids on the autism spectrum — many of whom have more significant challenges than Michael and Jonathan — will be better off than his sons because the services begin earlier and begin to fit the specific needs of children with autism.

But Michael and Jonathan need help now.

“They’re tired of being pioneers,” Pete says. “They need support.”

http://commonhealth.wbur.org/2014/06/aging-out-autism-services

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