Hire Autistic People; Here’s Why

January 28, 2013

Margaret Heffernan, blogger for for INC. interviewed me about autism and employment and wrote this blog post. You can read the original post and comments here.

Jeremy is autistic. He is also very bright, observant, and, it now appears, synesthesiac: he sees people, ideas, and feelings in colors. At first, his mother Chantal was skeptical–“I’m not, she said pointedly, from California; I’m from New York!” But she appreciated that Jeremy was being (as always) totally honest in what he told her and, when he said he wanted to start painting, she took him seriously, and encouraged him.

“He’s painting his dreams,” she says, “and people will pay for that. So often, he does advocacy for the autism community. He sits on taskforces. He has tested curriculum to teach life skills. He does conferences. He writes articles, and blogs for the United Nations. And, most of the time, people expect him to do this for nothing–or for coverage of his expenses. He is grateful for the opportunities. But he has a life, and a living to earn too. So the fact that people will pay for his painting: I’m all for that.”

Chantal Sicile-Kira is a leading authority on adolescent and early-adult autism. She’s written five books on the subject, the latest of which Jeremy co-authored. A passionate advocate for the autism community, she is adamant that autistic adults can and will be valued employees.

“Lots of people are pushed into academic qualifications and that’s fine,” she says. “But then the system breaks down after high school. It’s important for people on the autism spectrum to take an extra school year to learn life skills: self advocacy, relationships, organization. If they can do this, they can become employable. It’s utterly wrong that they should end up pushing shopping carts when, a year earlier they were getting high grades.”

As Jeremy writes in his blog, while “unemployment rates are frankly high for people in general, studies in the U.S. show it is greatly higher for those with autism. For example, the organization Easter Seals reported in a 2008 study that 22% of people with autism over the age of 16 have a paying job, compared to 75% of people who don’t have autism. This truth is that our differences make it difficult for employers, employment agencies, and job coaches to realize our capabilities and to offer specific recommendations based on our shared label. Belief in the ability of each person is necessary because judging us by neurotypical (ie “normal”) standards is not a real measure of our capacity for learning and being able to earn a living.”

The imminent arrival in the United States of Specialisterne has prompted a fresh debate about how to employ autistic talent. The Danish firm has pioneered finding meaningful roles for autistic people in Europe and now founder Thorkil Sonne hopes to do the same in America.

“It makes perfect sense,” says Sicile-Kira. “There are so many things that autistic people can do–and do well. For example, anything very repetitious and detail-oriented, work that requires great visual memory for the spotting of anomalies. You might not often think of someone with autism in terms of communication but they can be fantastic at understanding rules-bound communication, where it matters exactly what can and can’t be said to whom. Autistic people are very loyal, fastidious, and reliable. They are not going to come in late because they had too many tequila shots the night before.”

What’s key, she says, is to find (or to become) trusted intermediaries. That isn’t something that is unique to the autism community; after all, she says, she has a book keeper for her accounts. Jeremy is a wonderful painter but he needs someone to help with marketing; most actors have agents. What’s the difference?

I’ve known Chantal for a long time and have always been in awe of her astonishing energy and imagination. She’s proved a brilliant champion for the autistic community and never more so than now, when the first large generation of children, diagnosed correctly with autism, is about to graduate high school. She challenges all of us to think differently about who we might employ and how.

“It will be an economic failure if the new wave of high school graduates can’t be employed. All these kids have talent and ability and a tremendous capacity to contribute. We have to stop thinking that all employees have to be the same, with the same skills, the same attributes.”

Taking Your Son/Daughter with an Autism Spectrum Disorder to the Dentist

January 23, 2013

This blog post was contributed by: Pam Anderson, Indiana Resource Center for Autism;  Kim Davis, Indiana Resource Center for Autism; Cristina James, Riley Child Development Center; Katy Messuri, Easter Seals Crossroads; Leanne Suarez, Sonya Ansari Center for Autism at Logan.

Taking your son/daughter on the autism spectrum to the dentist poses many challenges. This article hopes to make you aware of some of these challenges prior to your first visit, as well as provide some useful ways to deal with them. Included in this article are three main areas that are most often in need of attention: preparation, sensory issues and communication.

Preparation

When seeking a dentist, call the office and discuss your son/daughter’s needs.The more you know ahead of time about their practices and why they do them, the more comfortable you will be.Ask if they have experience with children who have an autism spectrum disorder (ASD) and if they have special procedures in order to optimize each visit.Ask about those procedures.Some procedures you might ask about are:accompanying your son/daughter in the room while doing the exam; having an appointment at a time of day when your son/daughter is at his/her best; having a short wait time; and having the same staff at each visit for consistency.If you’re not comfortable with the answers to your questions, consider another dentist.Some dentists may refuse to treat your son/daughter because they’re unsure how to make them comfortable.

Is your son/daughter accustomed to daily tooth brushing? If not, consider working with an occupational therapist (OT) or an autism or behavioral professional to teach the child good oral hygiene habits. Use of visual routines and a timer are helpful for good daily brushing habits.

Use their toothbrush or a plastic tooth mirror (available at local pharmacies) and get your child use to letting you put it in his/her mouth.Make a fun game out of counting their teeth.Vibration toys that are safe for oral use, or even electric toothbrushes, are also excellent for getting your child use to the strange sensations in their mouths.

One of the most effective preparatory steps you can take is to create and read a social story about going to the dentist with your son/daughter.The social story should take the uncertainty out of what will happen at the dentist office.Be sure to highlight things that you think your child will like or be concerned about.A social narrative, “Going to the Dentist” is listed in the “Resource” section of this article.Another idea is to include an incentive/motivator for when the appointment is over.Does the dentist have a prize basket?Can you stop for a treat afterwards?There are many good books about practicing good oral hygiene and going to the dentist that you can read with your child.A resource guide for helpful books is included at the end of this article.

To get your son/daughter off to the right start with a dentist, schedule a few short “happy visits” to start off with.Keep these visits very positive and short.Let your son/daughter get use to the office environment; try out the chair; let the hygienist look in their mouth or count their teeth, and listen to the sound the drill makes.These may not all happen on the same visit.Use these visits to slowly desensitize your son/daughter to the experience, as well as discover what could potentially be difficult at future visits.

Sensory Issues

There are many potential sensory challenges at a dentist’s office – tastes, smells, textures, sounds, lights and proprioceptive. Knowing in what areas your son/daughter tends to be sensitive will help you know what coping strategies to try.Share your son/daughter’s coping strategies with the dental staff before the visit.Collaboration and teamwork are essential for a successful trip to the dentist.

To be comfortable with the doctor’s chair, you may want to ask the hygienist to lean the chair back before your son/daughter gets in it, as sometimes they don’t like the feeling of being moved backwards.Also, try using a bean bag chair in the dentist’s chair during the exam to provide some snug comfort.Deep pressure can be used before and during the visit for calming.Consult your son/daughter’s classroom teacher or OT for suggestions.Wearing the x-ray vest may be similar to wearing a weighted vest.This can be discussed with the dental staff prior to the visit, too.

Consider a heavy work task to be done before and after the visit for calming.Let your son/daughter stretch a therapy band in their hands, or even wrapped around their ankles while they are in the chair.Lighting in a dental office is often too strong for children with autism.Let them wear sunglasses and request that the staff try to keep the light out of their eyes as much as possible.Night time eye covers can be used, but will make it difficult for the staff to show your son/daughter what they are going to do.If the noises of the office are upsetting, request to be moved to a more quiet or private area.If not available, the use of headphones or an iPod/music player are good ways to limit noise.To ensure that tastes are familiar and favorable, bring your son/daughter’s own toothpaste and toothbrush to the visit.

Communication

For a child who may not be able to verbalize or recognize a problem, the accompanying feelings of anxiety and frustration can be overwhelming.The impact of these feelings on behavior can be significant.Having a dental professional who can communicate effectively will be very important.Below are some tips to improve communication at the dentist office.

Tell/Show/Do.This is a shorthand way to explain to staff what they should do. First, Tell your son/daughter what they are going to do. Next, Show the tool or action they are going to use (let your son/daughter touch the tool, if possible).Then, Do only after they’ve done the other two.This verbal preparation and demonstration will help eliminate some uncertainty for your son/daughter and put them more at ease.

  • Modeling is very effective for some children.Bring along a sibling or friend and letyour son/daughter with ASD watch as the doctor or hygienist performs the task on them first.
  • Letting the child know ahead of time how long something is going to last can be very helpful.Instruct the staff to prompt the child with time durations as they work.Some examples:“This will be all done when we finish counting to 10.”“I need to touch 20 teeth… help me count them all.”“That gritty cleaner will only be there for 1 minute and then you can rinse and spit it out.”
  • Instruct the staff that your child responds best to immediate praise for good behavior.When your child does something they want, staff should not delay their praises.This will help your child make the connection between what he/she does and the consequences.Some examples:“Great job keeping your mouth open.”“I like how you are …”“You did great while I cleaned the front of your teeth, now I’m going to clean the back of them.”
  • Ignoring inappropriate behaviors is also something you’ll want to inform the staff about.Have them try to ignore inappropriate behaviors as much as they can.Maintaining a calm voice may help to minimize behavior problems.

Other Issues

There are some unique dental issues that you will want to discuss with your dentist, if they apply to your son/daughter.For those who engage in bruxism (grinding their teeth) or self-injurious behaviors (such as picking at the gums or biting their lip) a mouth guard might be recommended so long as it is tolerated by your son/daughter.Dentists should also review your child’s medications and/or supplements.They will then be able to advise whether medications are affecting saliva production or if they contain a lot of sugar, both of which will increase the chance of cavities.

Seizures may accompany autism, and if your child has seizures you will need to discuss this with your dentist.The mouth is always at risk during a seizure; children may chip teeth or bite their tongue or cheeks.The dentist should be able to help you develop a treatment plan for these challenges.Be prepared to manage a seizure if one occurs during the dental visit.Instruct staff to remove any instruments from the mouth and clear the area around your child.A simple trick is to attach dental floss to rubber dam clamps or mouth props before putting them in so that you can remove them quickly if needed.

Sedation is sometimes used with patients, usually in cases where the child has high levels of anxiety or discomfort that prevent good coping skills, for those with uncontrolled movements (including gagging), or for those requiring extensive dental treatment.Sedative medications cause most children to become relaxed and drowsy.Unlike general anesthesia, sedation is not intended to make a patient unconscious or unresponsive.You and your dentist should select a technique based on the specific needs of the child and discuss the benefits, limits and risks of that technique.Your son/daughter may be referred to a hospital for extensive procedures to be done under stronger sedation or general anesthesia.

If you have any dietary or chemical restrictions that you are following for your child, be sure to make your dentist aware of these before the appointment begins.They need to know up front what your expectations are so that they can attempt to work within your guidelines.

Financial Access to Dental Services

Families without health insurance and those with health plans that do not cover dental care may be able to benefit from a wide variety of programs to ensure that they have access to the care they need.Before you investigate using services that provide dental care, it is wise to check if you qualify for any public or private health coverage plans that would provide dental care.

If your child is covered under Hoosier Healthwise (Indiana’s Medicaid program), dental services are a covered service.In Indiana, this coverage is limited to $600 per recipient per 12-month period, except for surgical and periodontal procedures.One topical fluoride application is covered every 6 months per recipient for patients from 18 months to 19 years of age.You can search for a dentist that accepts Medicaid near you at www.indianamedicaid.com.

Families who have private health insurance coverage may have dental coverage as part of the plan benefit.Some employers offer separate dental coverage that employees can opt to buy.Families are encouraged to seek out information about what benefits are available and procedures for obtaining authorization of services.Your employer, human resources department or plan administrator are key sources for this type of information.

A variety of clinics, programs and organizations provide dental services to children and adults in Indiana who do not have dental coverage and cannot afford standard fees.Each program has different eligibility criteria.To find options near you consider the following:

  • Many Community Health Centers provide dental services.For a list of community health centers go to:http://www.in.gov/isdh/files/CHC_and_maps_GIS_08.pdf.
  • Dental schools can be a good source of quality, reduced-cost dental treatment.The Indiana University School of Dentistry offers services for fees that are generally 1/3 less than a typical dentist practice.Contact: IU School of Dentistry, 1121 W. Michigan St., Indianapolis, IN46202-4186, Phone: 317-274-7461.
  • The Bureau of Primary Health Care supports federally-funded community health centers across the country that provide free or reduced-cost health services, including dental care.To obtain a list of centers in your area, contact the HRSA Info Center at 1-888-ASK-HRSA (1-888-275-4772) or www.hrsa.gov
  • Each year the Indiana Dental Association hosts the Give Kids a Smile Day.During this one day event (in early February) dentists across Indiana open their offices to donate dental care to children from low-income families.There are requirements that must be met.Appointments are required.Information about scheduling an appointment can be found at www.indental.org between October and December each year.

Conclusion

Taking your son/daughter to the dentist presents challenges for both the parent/caregiver and the dental office staff.By working together, challenges and anxiety can be reduced.Using ideas presented in this article, the child with ASD may have a better understanding of what to expect when he/she visits the dentist for the first time and may have a greater chance of experiencing a successful dental visit.

References

American Academy of Pediatric Dentistry. (n.d.)Sedation. From http://www.aapd.org/publications/brochures/sedation.asp

Bennie, M.(n.d.) Dental Dilemma.from Autism Today website:http://www.autismtoday.com/articles/DentalDilemma.htm

DynaVox Mayer-Johnson, 2100 Wharton Street, Suite 400, Pittsburgh, PA 15203;
Phone: 800-588-4548,Fax: 866-585-62620; Email: mayer-johnson.usa@mayer-johnson.com; Website: www.mayer-johnson.com

Indiana State Department of Health, Sunny Start Initiative.(2009, April 20).Dental Care: Options to Access Dental Services.From:
http://www.earlychildhoodmeetingplace.org/family.lasso?-token.corralexec=article_detail&-token.article_id=11893&-token.section=Resource_Fact_Sheets

Mabry, C. et al. (2008) Special Care Dentistry for the General Practice Resident: Practical Training Modules [PowerPoint Slides].Retrieved from NYS Office of Mental Retardation and Developmental Disabilities website:http://www.omr.state.ny.us/images/hp_dentistry_treatment.pdf

Miller-Kuhaneck, H.(n.d.).Going to the Dentist.from the Sensory Processing Disorder Foundation website:http://www.spdfoundation.net/library/dentist.html

National Institute of Dental and Craniofacial Research, National Institutes of Health.(2009, July 14).Practical Oral Care for People With Autism.From http://www.nidcr.nih.gov/OralHealth/Topics/DevelopmentalDisabilities/PracticalOralCarePeopleAutism.htm

Oakley, D.(2009, August 28).Autism and Dentistry: Dental Challenges for Families and Treating Dentists. The Autism News website:http://www.theautismnews.com/2009/08/28/autism-and-dentistry-dental-challenges-for-families-and-treating-dentists/

Resource List – Dental Visit

Books for Children/Students – Dental Visit

Books for Parents/Professionals – Dental Visit

Videos/Photographs – Dental Visit

Social Narrative – Going to the Dentist

Visual Support Schedule – Visiting the Dentist

 

Teaching Toilet Training to a Child with Autism

January 17, 2013

Here’s an informative article with many tips about toilet training by guest blogger, Professor Eric Lim of  Kits4Kids Foundation.

Toilet training is teaching an entire new skill. Teaching new skills to children with autism spectrum disorders works best when the steps to the task are organized into simple pieces. Teaching must also be consistent at all times and become predictable to the child in terms of rewards and consequences. In order for toilet training to be successful, the child must move from depending on reminders (timed trips to the bathroom) to recognizing the signs of a full bladder and taking the necessary actions him/herself.

As parents we look forward to that time when our child is finally toilet trained. We expect our child to learn to use the toilet as part of the growing up process. Not every child is alike, some children are difficult to train and may make toilet training harder on the parent. Learning to use the toilet is part of socialization. Children become interested in training when they become aware that other children and adults use the toilet. They assume that using the toilet is part of being considered a “big boy or girl.”

Most children enjoy the recognition and gratification they receive from adults when using the toilet as well as the rewards that come their way. However, young children with autism have trouble applying the same social interaction reason to toileting. They also are being asked to change set routines and rituals and they also may not be aware of or able to control their bodies just yet.

Signs of Readiness

For children on the autistic spectrum, it’s recommended to look for signs of readiness. Signs may include the following:

• Awareness that he or she has wet or soiled, a desire to remove the wet or soiled diaper (pulling at it, taking it off, digging in it, and or vocalizing displeasure.
• Getting a clean diaper, or taking you to the bathroom
• Ability to imitate actions (sitting on the toilet)
• Responds favorably to some form of positive reinforcement (a learned behavior increases after you reward it with something the child likes)
• Stays dry/clean most nights

When to start toilet training a child with autism:

• Many children with autism train later than the average age. Many succeed at urine training before bowel training. Many take longer to train, some reports suggest up to a year to become dry and two years to become clean.

• Start toilet training when you can be positive and the child is able to: sit comfortably on a potty chair or toilet for a couple of minutes, stay dry for at least 60 minutes, is aware of being wet or dirty, is showing interest in other people going to the toilet, showing some signs of cause and effect, and is willing to cooperate. Be prepared for it may be a long learning process.

Communication Problems with Toilet Training

For children with a communication deficiency visual learning may be an appropriate way to teach toileting skill. Does the child understand language? Does he or she understand “potty”, “diaper”, “dry pants”, “toilet”, “bathroom”, or any other words, signs, or pictures/symbols that may convey the idea of toileting. Children with Autism may have difficulty understanding and associating words with actions and most will at least need more time to process what you say. Can the child express the urge or need to use the toilet? Expressive language is almost always a problem for children with an autistic disorder. It will be important to be able to read their cues and/or teach a way to express the need or urge to use
the toilet.

Special consideration for children with autism:

• A child with autism may not be able to communicate a need to go to the bathroom, therefore body signals from the child, routines, and visuals might be significant aides.

• The child with autism may learn to use the toilet at home and be unable to adapt to a new situation easily.

• A child with autism may have sensory difficulties such as discomfort by the hard toilet seat, being afraid of water splashing, or want to play in or watch the swirling toilet water.

• In public bathrooms children with autism sometimes fear the hand dryers, have problems with the doors, the way the toilet flushes, or any number of challenges.

• Having a bowel movement is often harder and occurs less often. Some children go off alone and squat, some insist on wearing the pull-up or diaper to make a bowel movement, some fear that it hurts, some smear feces, and others want to be clean so much that they react to getting anything dirty on them.

• Rule out any medical problems and account for fears that may have developed due to pain from constipation or urinary tract infections in the past.

Before you begin toileting make sure your child does not have a medical problem which would interfere with making toilet training a success. This can be ruled out by the family physician after a routine physical. Contact your physician if you notice any unusual signs like too much or too little urination, painful urination, urinates frequently or unable to hold urine. The same applies to concerns with stool. Children with Autism have a higher than expected rate of bowel problems (constipation or loose stools or both) and require extra care if this is the case.

Making Toilet Training a Success

• Before starting, keep a record for a few days, charting every 20 – 30 minutes whether your child is dry, wet, or dirty. Some diapers have a strip that changes color to make this easier. Chart periodically, maybe once a day each week after starting training to keep track of progress, problems, and tendencies.

• When you start training, prepare the environment with the needed equipment and remove extra distractions.

• Plan a schedule that will match the report you gathered. If you child usually stays dry for an hour, anticipate to take him/her to the bathroom about 10 minutes before. Try to match the schedule to the natural cycles of the day.

• Plan the routine that you will have your child follow and make a picture chart of that routine so that your child and everyone who helps him can follow it. Change the cue level by decreasing examples as the child achieves the skill.

• Watch for signs of readiness such as when your charting shows being dry for an hour, your child indicates in some way that she is wetting or soiling diapers, indicates in some way that she has soiled or is wet, regular bowel movements, or interest in others going toilet.

• Keep positive, praise attempts, praise being dry and clean, use reinforcement and give your child time.

• When your child has some success with understanding toileting help him/ her learn to indicate that they are going to the toilet with a sign, word, or picture or several of these. Children today often use potty, pee and poop, but signing toilet may work or a picture of the toilet may be helpful. Visual cues as part of your routine helps the child tell you when they have to go potty.

Visual and Verbal Cues in Toilet Training

• Give a visual and verbal cue –such as an auditory giving the child a buzzer or bell. Decide what verbal cue you will use such as go potty, go pee, or go to the bathroom. If you use a signs, pair it with the verbal cues.

• Enter the bathroom with the cue needed (verbal, light touches, taking the child’s hand, or more physical assist).

• Pull pants down to ankles with cue

• Sit down with cue

• Pee or poop or both with cues

• Get toilet tissue and wipe with cue

• Stand up with cue

• Wipe, if needed, and throw tissue in toilet with cue

• Pull up pants with cue

• Flush toilet with cue

• Turn on water and wash hands with cue

• Turn off water and dry hands with cue

Use visuals: For many children, having a picture of a toilet or potty chair as a cue to go helps. You might also make a picture schedule to sequence the major activities of the day adding the toilet pictures before or after these. Children have learned to go on their own in this way. The pictures can be laminated and put on with Velcro or inserted in plastic sleeves so you or your child can take them off or change the order. There are also videotapes about using the potty that some children with autism have reacted well to. Other parents have made videos for their child to watch, some have paired music with the pictures. Model for you child, use books and pictures sequences about going to the toilet. Visuals
help your child know what to do, remember what to do, and learn from the sequence.

Use imitation: Imitation is a type of visual. Many children with autism are delayed in their imitation abilities, but many do watch carefully to what is going on around them even if they don’t seem to immediately imitate. Watching someone close to their size use the potty may be useful, but it is helpful for them to see that going to the bathroom is something everyone does. Some children might respond to the use of a doll to go through the steps.

Teach privacy and modesty: Most young children undress anywhere and don’t care who sees them go potty. However, as they are approaching four years of age, they often begin to want more privacy. Children’s needs must be considered and children have to be taught what society expects. Consider teaching your child to undo and pull down pants only in the bathroom as well as pulling up and fastening pants before leaving the bathroom. Once your child is toilet trained teach him to close the door. Also you might want to consider teaching your child when and where he must
be clothed or covered and not naked. Teach them to ask for ask for help with bathing.

Use words that are appropriate: Some children with autism are constant with the words they heard when very young and will not change to more appropriate words later. However, if you are aware of the need to be age appropriate it usually works to use the words that everyone else of the same age is using.

Ideas for Specific Problems That May Be Encountered:

• Resists sitting or doesn’t sit and relax long enough: Encourage your child to sit with his/her clothes on. Make sure the seat of the potty chair or the toilet is comfortable to your child, maybe it needs to be softer, maybe lined with a diaper, maybe warmer, or maybe your child’s feet need to be more stable. Some children may need to have the hole on the toilet smaller and experimenting with various sizes of seats or even covering the toilet with a towel or cardboard may help. Give your child a reason to sit such as his special reward that he/she gets while sitting. Use modeling by sitting together or having a doll or favorite stuffed animal sit. Give the child a visual or auditory cue about how long to sit by a visual timer or the length of a song. Help your child relax while sitting by providing support for feet and body where needed and rubbing your child’s legs. Sometimes children are so tense that they can’t relax and go.

• Afraid of flushing or excessively interested in flushing: Encourage your child to play in water that swirls in other places than the bathroom and at appropriate times. Always let your child know when you are going to flush the toilet when he/she is in the bathroom. Gradually bring your child closer to the toilet by providing a place for the child to stand while you are flushing. When your child is ready allow him/her to flush and either run or stay and watch. Establish a rule that you only flush once then you are all done.

• Afraid of public bathrooms: stalls, hand dryers, different sinks, toilets that flush automatically: At first, it may be necessary to be aware of the public bathrooms you may frequent to know what is likely to cause your child problems. Some of these can be avoided like being far away from the dryer and not walking under it and practicing with soap dispensers and sinks that go on by themselves in a fun way. Protect your child from toilets that automatically flush since some splash a lot. The more you know about the quirks of the public restroom the more you can prepare you child. The handicap stalls are wider and more accessible many a sink next to the toilet.

• Playing in water or with toilet paper: Take the toilet paper off the roll and put it up until your child can master the use of it. Put safety catches on toilets until your child can understand that toilets are not places to play. Allow lots of water play in appropriate places and even swirling water to watch such as in “tornado bottles”. Lower water toilets aren’t as much of a temptation while sitting. Use tissues that are folded or pre-measured, a box of wipes, and folded toilet paper are helpful.

• Resists being cleaned or not wanting to be dirty: Sometimes smearing of feces begins by the child trying to clean himself. They may try to clean up then make a mess. For whatever reasons your child may be having trouble in this area it is wise to stay as calm as you can. Establish a clean up routine that is not especially rewarding, but is comfortable and quick. Make sure the wipes are big enough and comfortable enough for your child including temperature and texture. If your child gets some feces on his hand and is distraught help the child wipe it as soon as possible. Show the child that they can wash their hands clean with soap and water. Sometimes as children with autism grow older they become upset when something happens like a toilet overflowing or they get their hands dirty and react
out of proportion, so we want to assure them early on that this can be fixed quite easily.

• Fear of having bowel movements or constipation: This is a common problem for many children with autism at some time in their childhood. It may be contributed to by diet, not sitting long enough, not being able to relax, their activity level, or various other factors. It is helpful to help a child recognize that the grunting and squatting he/she is doing helps make a bowel movement and that is good. Many children go and hide in a corner to do their poop and resist a change. Help them move closer to the bathroom and perhaps identify where to squat by using a plastic mat as the spot. Gradually influence the action to the potty or toilet over time the child associates the grunts and pushes as signals.
A child may have to go in the diaper even while sitting for a while so try a diaper-lined toilet seat. If a child experiences constipation on a regular basis bowel movements may be uncomfortable and you may need to seek advice from you doctor.

• Trouble in standing while urinating: When your son is sitting to urinate and completely toilet trained or when he shows an interest in standing he may need help. A visual chart of how boys use the bathroom may be helpful. For example action pictures of a boy putting the seat up, standing while urinating and aiming in into the toilet. Sometimes boys do not want to touch their penis because they may have been told not to touch on some occasion. A male in the family may need to demonstrate how to point and aim. Something may be used for a target like a floating paper, a Cheerio, or colored toilet water.

• Regression in toileting: Sometimes a child who is fully toilet trained will begin to have many accidents. Evaluate changes that have occurred and what information or additional supports may help your child feel comfortable again. Some reasons regression may occur are after an illness, after a parent has been away, after a move, after starting school, after a baby has been born, or when going to the bathroom has been painful. Your child may be in a situation where he doesn’t have the skills to tell someone he needs to go and holds it too long. His supports may not be in place. Sometimes at school there is something about the environment or the schedule that is causing problems for your child.
Go back to all the original supports that worked and put them back into your child’s life while reassuring your child that he/she can and will succeed.

Consistency in Toilet Training

Your child can be toilet trained. However, training your child with autism will likely take more planning, attention to detail, and consistency than training typical children. (Remember that all children with autism are different and some are easy to train.) You have to organize the sequence and provide a schedule and consistency until your child understands how all this relates to his body functions. Keep your expectations realistic and reinforce your child for trying as well as for success, always reassuring the child that he/she will succeed and there is plenty of time to try, and be persistent.

 

Pace Yourself

January 15, 2013

In the 1992 movie, Death Becomes Her, an aging actress (Meryl Streep) and her longtime novelist rival (Goldie Hawn) battle over the love of a plastic surgeon (Bruce Willis) as well as a magic potion that promises eternal youth.

As parents of  individuals with autism – many who still require our help and support as adults –  we may wish we had access to a magic potion that would keep us alive forever. But we wouldn’t want to end up like  Meryl and Goldie who after many years of life need paint and putty to cover their rotting flesh. And despite the potion,  they still can’t remember where they parked the car.

As parents, we need to learn to pace ourselves. At the beginning, after the diagnosis,  we are trying to do everything possible to help our child.  It’s  true that early intervention is important.

But it is also true that when you are a parent, you are in it for the long haul. Think of a marathon, not a 200 yard dash. Pace yourself accordingly. You’ll last longer, even without a magic potion.

Life’s Messiness : Here’s to a Dreamy 2013!

January 11, 2013

Real Life and It’s Messiness
by Jeremy Sicile-Kira

Last year at this time I posted a dream I had involving Johnny Depp (do I have your attention now?)  and my 2012 goals on my author website. I realize that reading about the dream was more interesting than reading about my goals.

However this year it’s my son, Jeremy, who is having all the interesting dreams,  and I’ve written my goals down, but not sharing them here today.

Instead, here’s a painting by Jeremy entitled  Real Life and it’s Messiness and what he has to say about it: “Justly I dreamt I painted the real messiness of life that my nice aunt Sara helped me to portray. Usually the greatness of life in my other paintings is portrayed by great layers of color, but here I painted paper mâché and rock salt. Nicely it is very true to life.”

One thing that will help your life be less messy  is to set some goals. Here is an interesting blog post and graphic entitled  We Suck at Setting Goals from the Education Database Online website that shares some research and tells you want you can do to set some successful goals in the new year.

Best wishes in setting goals to help you enjoy life’s messiness.

Together We Can Create the Future We Want to See

January 10, 2013

We all know about the high rate of unemployment for people on the autism spectrum. Below is  a press release about a venture focused  on entrepreneurial solutions for adults with autism that is having it’s first session on Thursday, January 10th.

The Autism Entrepreneurs Center, run by LTO Ventures, is operating  in collaboration with the Achievement Vocational and Life Skills Academy, Grant-a-Gift Autism Foundation, Nevada Department of Employment, Training & Rehabilitation Bureau of Vocational Rehabilitation, and the University of Nevada Las Vegas Center for Autism Spectrum Disorders.

Autism Entrepreneurs Center to Help Adults with Autism Start Up and Operate Real Businesses in Nevada

First Venture in the U.S. Focused on Entrepreneurial Solutions for the 90 Percent Unemployment Rate for Adults with Autism

HENDERSON, Nev., January 7, 2013 – LTO Ventures today announced the opening of itsAutism Entrepreneurs Center, first and only venture in the U.S. specifically established to help adults with Autism Spectrum Disorder (ASD) start up and operate real for-profit businesses.  The first session of the Center will be held Thursday, January 10, 2013 from 2 to 4pm at the Autism Center of Southern Nevada, 72 N. Pecos Road, Suite C, Henderson, Nev.

LTO Ventures  is a 501(c)(3) non-profit company with headquarters inHenderson, Nev. that develops live/work/play communities for ASD adults.  LTO Ventures created the Autism Entrepreneurs Center to provide ASD adults the specific guidance, tools and resources they need to create, launch and operate their own real for-profit companies. LTO Ventures plans to pilot the program in Southern Nevada with the first-year goal of creating 12 new incorporated businesses and putting up to 100 ASD adults to work making minimum wage or better.

LTO Ventures also plans to create two related entities: 1) partnerships between ASD adults and typical adults to jointly launch and operate businesses; and, 2) a “business incubator” to encourage businesses created within the Center to share resources.

“Most vocational programs for ASD adults focus on convincing existing employers to hire them. We believe there are ASD adults who have great ideas and unique talents who would be more successful bringing their own ideas to fruition and working in settings created to foster their abilities,” said Mark L. Olson, President and CEO of LTO Ventures. “By giving ASD adults another choice for meaningful work, we are supporting self-determination in their employment outcome.”

“But like many typical individuals, ASD adults don’t know necessarily how or where to go to get started. Our Center proposes to pick up where job development support groups, short-term vocational training, and employment toolkits end, and provide the step-by-step guidance, tools and resources to create and operate real small businesses,” Olson said.

  •  Easter Seals published in 2011 the results of a study conducted in 2010 that found that only 11 percent of adults with disabilities work full-time, and only 32 percent have any kind of employment, compared to 48 percent of adults without disabilities working full-time and 74 percent working full-time, part-time, or self-employed.
  •  Easter Seals also reported that autism was the most prevalent disability — 62 percent of adults with disabilities in their study had some form of autism (Autism, Aspergers Syndrome, Pervasive Developmental Disability-Not Otherwise Specified, Rett’s Disorder)
  •  Autism Speaks, a leading advocacy organization for individuals with autism, in a 2012 Employment Think Tank, reported more than 500,000 children and teenagers with autism will reach adulthood in this decade and join the market for jobs, housing, and services.
  •  The California Senate Select Committee on Autism reported the average salary for those ASD adults who are employed is $4,824 annually.
  •  Unemployment in Nevada statewide is the highest in the U.S. at 10.8 percent for November 2012, the most recent reported month, and 10.4 percent in Las Vegas.

WHO SHOULD ATTEND:  ASD adults ages 18 and older, and their parents, family, caregivers and agency staff are invited to attend the Jan. 10 session. Anyone else interested in learning more about how to create businesses to employ ASD adults, or to help ASD adults start their own real businesses is encouraged to attend.  There is no cost for this session.

The Autism Entrepreneurs Center operates in collaboration with the Achievement Vocational and Life Skills Academy, Grant-a-Gift Autism Foundation, Nevada Department of Employment, Training & Rehabilitation Bureau of Vocational Rehabilitation, and the University of Nevada Las Vegas Center for Autism Spectrum Disorders.

Conference Jan 11 &12: Adulthood on the Spectrum: Preparing for it—Living it

January 9, 2013

Here’s an opportunity to get educated about  Adulthood on the Spectrum: Preparing for It — Living It. The Greater Long Beach and San Gabriel Valley  ASA Winter 2013 Conference is  taking place on January 12 – 13th, 2013 at The Grand Event Center
4101 East Willow Street, Long Beach. For more information or to register contact Regina Moreno: (562) 237-1520, or visit their website.

Speakers presenting include: Brian R. King, Michael John Carley, Becky Tschirgi, Mary and Jerry Newport, Johnny Seitz, Chris Rials-Seitz M.A. , Sue Rubin, Jeremy and I among others.

Hope to see you there!

Take Care of Yourself. No One Else Will.

January 8, 2013

You are not a cat and you and you don’t have nine lives. Even if you believe in reincarnation you only have one go at this time right now. So it’s important to take care of your physical and mental health.

If you are a caregiver to others, it’s all too easy to lose yourself. There’s so much to do, you have barely time enough to take a shower.  It’s hard to make time for yourself every day.  Often we put ourselves in second place – but this is wrong! If you don’t take care of yourself, you will be no good for anyone else. Tomorrow there will be more care taking and more reasons why you can’t do something you want to do to take care of yourself. So you have to find some time every day.

For some it is impossible to leave the house, or find more than 10 to 15 minutes at a time  (I’ve been there!) but it’s important to create pleasurable moments for yourselves in even those short periods of time.

Today I’m meeting a friend and other dog-walkers for a walk. This takes care of three things important to my well-being: I’ll get some exercise (physical health), I get to spend time chit chatting with a friend (mental health), and I get to see Handsome have fun with his dog-mates ( laughing is a great stress releaser). OK, so I have to do this at 6:15 am  (where even in San Diego  it is cold and still dark this time of year) before my husband leaves the house, but hey, nothing’s perfect!

What are you going to do to take care of yourself today?

Baby Steps Are OK

January 7, 2013

I don’t know about you, but many times I don’t get things started because I feel  overwhelmed by the enormity of a task at hand, I start thinking of all the steps needed to be taken or all the answers I need in order to get results. Whether it is making plans  for when we are no longer around for Jeremy, or just  getting my messy desk under control, I start thinking of all that needs to be done and before long I feel overwhelmed.

When I worked as  a line producer for a soap opera, I had to get a 26 minute show in the can every day. I got used to having “break downs” for each show and a plan for every eventual problem that could come up. The show had to be done. Life may seem as dramatic as a soap opera at times, especially for those of us with children with autism or other special needs. But in reality, real life is a lot messier.  You may have goals –  but unlike scripted shows, you can never be sure of the ending. So trying to think ahead of all the possible solutions to challenges that may come up can feel overwhelming.

So my new mantra for getting unstuck and  moving forward is that baby steps are OK.  I don’t have to have all the steps figured out – the important part is getting started.

Baby steps can be taken even when you only have 15 minutes. The to do list can get smaller. The desk will look less scary with one less pile and a fifteen minute dent in it. Information and possible answers to help plan for a child or elderly parent  can be researched in small doses – as long as all the information is stored in the same place and easily found when needed.

Think baby steps, and you’ll get there. In the end, they add up.

 

 

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