Category Archives: Early Intervention

Future Funding A Serious Issue for Autistics

Road to Adulthood

We always talk about how to best get people on the autism spectrum the resources they need to thrive. Typically, that conversation centers around early intervention, therapies inside and outside of school, routines and advice for parents in the home, and advocating for a safe and healthy environment for these kids. But what happens when they become an adult? We put all this effort into having them reach their highest potential, but not everyone on the spectrum at 21 is developmentally at that age. So does all that effort go down the drain?

Christopher Merchant, now 19 years old, was diagnosed with autism and is developmentally on par with an elementary school student. He can read and do simple math problems and dedicates three hours daily at a car dealership where he has an aide to keep him on track. His mother, Lisa Merchant, has seen her son reach these milestones that she didn’t think were possible after his diagnosis, “it’s like learning a sport or playing an instrument: The more therapy he gets, the better he gets at it,” she explains.

When Christopher turns 21, he will no longer be eligible for therapies that address his speech and feeding challenges. His mom, expresses her concern, “Our biggest fear is he won’t end up with funding and he’ll end up sitting on the couch. My school district does a really food job–I’m just afraid all their good work will be for naught.”

In Pennsylvania, where the Merchants live, the number of people with autism has more than doubled, with adults being the majority of the growing population. In 2013 there were 8,395 adults on the spectrum in the state, and that number is projected to be over 30,000 by the year 2020. These numbers are reflected across the country with autism diagnoses being made for 1 in every 68 children. A report from their Bureau of Autism Services (BAS), created in 2007, found that even though they have started creating programs for adults on the spectrum, “as people transition to adulthood, the needs for supports and services often increase, although services become more difficult to access.”

This transitioning process and lack of funding/resources for people in the autism community is a serious issue; it is an issue for the parents who sometimes lose their job since their adult child still needs them, it’s an issue for the person on the spectrum, who after making so much progress up to this point now faces a brick wall, and it is an issue for the state, who has to find a way to incorporate people on the spectrum as productive members of society worth investing in. However, states like Pennsylvania are really taking these issues by the reigns. Other states should also being to recognize the need to address these challenges sooner rather than later.

 

Read the original article HERE

Read about ICare4Autism’s Workforce Initiatives HERE



Autism and Race, are they connected?

autism and race

Since the rate of autism diagnosis has more than doubled between the year 2000 and now, many studies have pointed to the importance of early diagnosis and treatment. The idea is that, the earlier the symptoms can be detected, the better equipped family and professionals will be to provide the right treatments and therapies. Not only this, but also by helping their child sooner rather than later, they are giving their child the best chance at reaching their full potential. However, for many families, it can be challenging to receive all of the appropriate resources they need to help their child.

According to the Center for Disease Control, African American and Hispanic children do not get an autism diagnosis as promptly as their Caucasian peers. While many children tend to get diagnosed on the spectrum at the age of 4, research shows that African American children are diagnosed one year to two years later. Those two years may not seem like a huge issue, however those are years of critical brain development, where children learn many of their language skills and social skills. Research also shows that when minority children do get a referral, they are often misdiagnosed as having ADHD or other behavioral conduct problems.

This lends the question of whether autism may look different or manifest itself differently in African American or Hispanic children. So far, research has shown that regressive autism is twice as common in African American children as it is in Caucasian children. Regressive autism is when children lose social and language skills after they have developed them. Other studies hint that African American children are likely to exhibit challenging and aggressive behaviors, or that they have more severe problems with language and communication. The causes for these differences are not known, but it could still be traces back to the lack of resources and diagnosis of this specific population.

Recently Dr. Daniel Geschwind, autism scientist and researcher at UCLA, has joined with the Special Needs Network (SNN) to work on a large research project that will help identify genetic causes of autism in African American children. You can read about this project and how to get your child involved with his study here. In a topic full of uncertainty, one thing is certain, and that is the lack of scientific research to help us understand any differences in autism due to ethnicity or race. As more research is underway for underrepresented populations, we hope to be able to provide the right resources and service these children will need to thrive.

At Shema Kolainu, we serve children of all religions and backgrounds in the New York metro area and have a strong belief in giving every child their best chance.



Autism Siblings Need Support Too

Parents who have an autistic child often struggle to find a way to balance their time and attention, especially with other children they may have who are not on the spectrum. This can create tension and stress between siblings that isn’t healthy for anybody in the family. The autism society proposed the following steps to help siblings cope with having an autistic brother/sister:

  • Siblings need age-appropriate information about their autistic brother/sister so they can begin to understand why their sibling is behaving in a way they may find weird. Keeping this information from your child will cause confusion and potential resentment later on.
  • The same way you praise your child on the spectrum for their progress and effort is the same way you should praise their sibling as well. This recognition is important for keeping up your child’s self-esteem and make sure they feel accomplished when they overcome their own obstacles as well.
  • Take a small chunk of time where you spend direct one-on-one time with your typically developing child. Siblings may feel ignored sometimes and so doing this may lessen any building stress or worries they may have that you don’t care for them as much as their brother/sister.
  • Teach your child how to play and interact successfully with their autistic sibling. Use toys and activities that interest them both, and provide positive reinforcement for them working together, such as praising.
  • Work together with your typically developing child to be more patient and understanding of each other. Help them develop positive ways to cope with and manage their emotions.
  • Explain strategies for dealing with questions and comments from their peers or other people in their community. Prepare them for situations that may arise where people do not understand what autism is and how to react.
  • Make sure to give each child the space they need from their sibling. Despite the typically developing child may have more responsibilities, make sure that they aren’t overwhelmed or resentful of things they may have to do for their sibling that will not necessarily be reciprocated.


Group Training for Parents Proves Highly Beneficial

Antonio Hardan and his colleagues at the Stanford University School of Medicine and Lucie Packard Children’s Hospital Stanford conducted a study where they found that training parents in groups about basic autism therapy was a beneficial method in helping children improve their language skills. Dr. Harden, the study’s lead author and professor of psychiatry and behavioral sciences says, “We’re teaching parents to become more than parents.”

The 12-week study included fifty-three children with autism, ages 2 through 6, who all had language delays, and their parents. Focusing specifically on language building, parents were trained how to use systemic rewards for the child making an effort to talk about it. For example, if a child shows that they want a ball, the parent responds with, “Do you want the ball? Say ‘ball.'” Even if the child only manages to make out a “ba” the parent then rewards the child with the ball in order to encourage their functional language use. Though this sort of therapy is similar to applied behavioral analysis or other behavioral therapies, it is a lot more flexible and parents are able to focus in on their child’s interests.

The therapy used in the study, called pivotal response training, was introduced to half of the parents in the study, while the other half were exposed to basic information about autism. Researchers measured the children’s verbal skills at the beginning of the study, 6 weeks in, and again at 12 weeks at the end of the study. They found that 84% of parents who received the pivotal response training were able to use it correctly and their children did show an increase in the number of things they said as well as their functional use of words when compared to the children in the control group.

Dr. Grace Gengoux, co-author of the study and a psychologist specializing in autism treatment explains, “There are two benefits: the child can make progress, and the parents leave the treatment program better equipped to facilitate the child’s development over the course of their daily routines.” With the rise in autism diagnoses, many parents are finding it difficult to receive the services they need and to the extent that they need it. This group training allows for parents to continue therapy based practices in the home. Dr. Harden explains that, “parents can create opportunities for this treatment to work at the dinner table, in the park, in the car, while they’re out for a walk.”

Researchers also found that when training parents in a group, they feel more empowered to help their children since they are surrounded by people with similar experiences and can connect on many levels. The bottom line is, when parents work together to provide the resources that their child needs, they can really make a difference in their lives.

To read the original article, click HERE



ABCs of the IEP

Individualized Educations Program (IEP) meetings are an important part of giving your child the best education to help them succeed. IEPs are personalized for each child and their families so that the school and staff can work at the child’s level to create a school program that addresses their needs. It can sometimes be difficult to allocate large amounts of time for these meetings, since teachers and other staff may need to find coverage for the duration of  the meeting, and parents have to take time from work or daily activities to participate–but it is an opportunity for parents and professionals to collaborate to improve the quality of education their child will receive.

The National Center for Learning Disabilities expand this idea to, “These individuals pool knowledge, experience, and commitment to design an educational program that will help the student be involved in, and progress in, the general curriculum. The IEP guides the delivery of special education supports and services for the student.” This makes it important to do some planning for the meeting ahead of time in order to make the most of it. Below are some tips for before, during, and after your child’s IEP.

Before:

  • Build positive relationships with the people who will be involved in your child’s IEP meeting, whether that is the teacher, school psychologist, etc.
  • Make a list of points that you think should be addressed at the meeting so that you don’t forget to mention them.
  • Do some of your own research on the format and goals of the IEP meeting so that you are prepared.
  • Send the people on the IEP team copies of assessments and materials containing information they will need about your child in order to personalize his/her program.
  • Review any data about your child that you may have i.e. last year’s IEP, evaluations, medicals, etc., so that you are familiar with the material as well.
During:
  • No one knows your child better than you, so make sure to talk about their strengths, interests, and needs
  • Remember that you may not always agree 100% with a particular method they want to use to develop a specific skill; however they are trained to design the best step-by-step ways to help your child based on the information you give.
  • Don’t hesitate to ask questions or for clarification on anything you don’t understand. You can also write down your questions if they are for a specific team member, to discuss one-on-one.
  • Make yourself at ease so that you can be your child’s best advocate–if that means bringing along a spouse, family member, or friend for support, make sure to let the school know ahead of time who you will have with you.
After:
  •  Take a copy of the IEP home with you to review, especially if you aren’t able to make decisions at the meeting.
  • Review the agreed upon IEP with a team member to make sure everything is clear. Remember that you can always change your mind and withdraw your permission from any part of the IEP that does not seem helpful or appropriate.
  • Communicate with your child, the best you can, about what he will be working on during the school year.
  • Continue to develop a collaborative relationship with the professionals who are constantly interacting with your child so that you can reinforce skills and any progress they make in the home as well.


Going to the Dentist

Taking your child to the dentist can be an ordeal, especially for the first few times, since they are expected to let a strange person put cold metal tools into their mouths and sit still during the whole visit. For a child on the spectrum, this ordeal can be especially challenging for the family as well as the dentist. For Nicole Brown and her daughter Camryn, going to the dentist for a basic cleaning was a miserable experience. Camryn was confused and disoriented by the bright lights in her face, the strange noises the dentist’s tools made, and everything else unfamiliar in the room. She would sometimes panic and run out of the office altogether.

Ms. Brown was finally able to locate a pediatric dentist that was able to help her daughter adjust to her routine visits. Instead of suggesting that her child be sedated with anesthetics or immobilized, Dr. Luedemann-Lazar set up weekly visits to help ease Camryn to the norms of seeing the dentist. She gave her lots of breaks so that she wouldn’t get overwhelmed as well as gave incentives, with the help of mom, such as listening to a snippet of her favorite song when she sat calmly for a bit.

Now, researchers are studying how to help children on the spectrum overcome any challenges and fears they have when visiting the dentist. New programs are also being implemented to help dentists and their staff learn more about treating children with special needs. Josalyn Sewell, a dental hygienist with an autistic son, says, “There are children who are completely nonverbal, and if they have a toothache, it completely shuts them down.” This is why parents are urged to start dental care before there is an actual emergency, such as a toothache or cavity, because putting a distressed child in an unfamiliar situation never goes smoothly.

Here are some tips to help your child adjust to dental hygiene and dentist visits:

  • Start Early: get your child familiar with the brushing sensation on gums before their first teeth even come in, so that when your child is ready for the toothbrush they are used to the process and sensations that come with brushing your teeth.
  • Go Electric: since many children, including those not on the spectrum, have very little patience when it comes to brushing their teeth, an electric toothbrush can help parents make the most of the time they are able to actually brush their child’s teeth.
  • Start Small: if getting the brush in your child’s mouth is a major obstacle, then start with baby steps; maybe brush one tooth first for a few seconds and then two or three days later, try brushing the same tooth again for a few more seconds. It’s always okay to take it slow.
  • Rewards: some parents call it bribery, others call it incentives, whatever the case, introducing a small reward every time your child is able to keep the brush in their mouth or even allows the brush in their mouth can go a long way–just make sure the reward isn’t candy.
  • Set up the routine:  let your child know what is going to happen. This can be done through visual aides such as creating a picture schedule to supplement the words used to describe what will happen.
  • Careful with toothpaste: use kid-friendly toothpaste kids, especially those still learning how to spit, and even so, only use a very small amount. Sometimes a wall-mounted toothpaste dispenser can be helpful for kids learning to handle toothpaste portions on their toothbrush.
  • Set a timer: brushing until the count of ten, or to the end of a song, or setting a timer to let the child know how long they should brush for and when the brushing is okay to stop makes this activity much more manageable for both parent and child.

To read the original articles, click HERE and HERE

 



Earlier Autism Detection Raises Questions About Early Intervention

Autism is a genetic disorder that affects about 20% of younger siblings of those on the spectrum. Researchers are now saying that they often show symptoms as early as 18 months, according to a study published in the Journal of the American Academy of Child and Adolescent Psychiatry (JAACAP). The study used 719 younger siblings of those with autism, otherwise known as ‘high risk’ siblings, who were assessed at 18 months and then 36 months to identify any social, communications, and repetitive behaviors that could be early symptoms. Warning signs such as poor eye contact and/or repetitive behaviors were observed in 57% of siblings and among those without symptoms at 18 months, for the ones who were later diagnosed, started showing signs by 36 months. Researchers note that about half of the children had poor eye contact combined with limited gestures and imaginative play while other children exhibited repetitive behaviors and lacked nonverbal communication skills.

Although it is important to detect these warning signs or early symptoms of autism, John Elder Robison, author of Raising Cubby, Look Me in the Eye, My Life with Asperger’s and Be Different–adventures of a free range Aspergian, and member of the Interagency Autism Coordinating Committee of the US Dept. of Health and Human Services, expresses his concern over early intervention. According to people on the spectrum who had received early intervention treatments as children, their experiences seemed half positive and half negative.

While many people talk about how wonderful it was to have that support throughout their childhood, “others talk about suppressing behaviors that embarrassed parents…[and] imposing their will where it was not wanted.” Robison argues that this is something to take into serious consideration as we move forward with creating new treatments and therapies for early intervention. He critiques our abilities to deter autism in infants now as young as 6 months old, asking what interventions are actually appropriate at this stage and to what end?

When providing intervention for a four-year-old, we are able to see the progress we make in the child’s behaviors and adjust our plans accordingly. However, with an infant, the issues are not very clear, Robison says, “We may pick up a sign of autism, but what kind of autism? Will the child be verbal or silent? Will the child be lovable, eccentric, unable to care for themselves or talk…it’s too early to know.”

As we continue to move forward with autism diagnoses at earlier stages, we also need to move forward in the methods and treatments we use for early intervention.

To read the original study, click HERE

To read John Elder Robison’s article, click HERE



Taking Literacy to the Next Level



Dr. Marion Blank is a developmental psychologist with a specialization in language and learning, director of the A Light on Literacy Program in the Department of Child Psychiatry at Columbia University, and a consultant to government bureaus in England, Canada, Holland, Israel, and Australia. After studying how children learn language for over 40 years, she received the Upton Sinclair Award in Education. For children on the spectrum, about half are non-verbal or are limited to few words. So when we see news stories like the one about the non-verbal autistic teen who gave a graduation speech using technology, we think of them not only as an extraordinary individual but also as an isolated case that goes against the norm.

Dr. Blank uses this point to criticize the assumption we make that children who are non-verbal will not be able to use language. She asks, “what if most, if not all non-verbal children could learn to read and write and are not doing so simply because they have not been taught?” For typically developing children, spoken language comes before written language, so if they cannot speak then they are not ready for reading and writing. For these students on the spectrum, their school instruction focuses on learning to write their name, learning signs relevant to the classroom, and learning a few sight words; but they are not given the same opportunities as those that we hear about on the news.

Is it possible that all non-verbal children are able to learn language to the extent of these “isolated cases”? Dr. Blank argues that is it because its important to recognize that many of the success stories we see on the news actually started with a lot of home instruction. They were able to find the methods that fit their child’s needs in order to teach them in a way that allowed them to learn. “They [parents] also did not use traditional reading instruction and so were able to transcend the assumptions guiding the educational system and use technology to give their children the opportunity to become competent language users,” she says. This is why she designed her own program the mimic this type of home instruction, called Reading Kingdom.

Overall, it is important for parents, professionals, and the general public to understand that non-verbal autistic individuals are definitely capable of more than we usually assume. Dr. Blank says we know we succeeded when we no longer see these success stories on the news because literacy in children on the spectrum will be the norm.

To read the original article, click HERE



Understanding Sensory Challenges

Occupational therapist Lindsey Biel, co-author of “Raising a Sensory Smart Child” and “The Definitive Handbook for Helping Your Child with Sensory Processing Issues,” has some important points to make about how to best support a child with sensory issues. As the number of children with autism rises, so does the concern in the autism community for providing the necessary knowledge to understand those affected by sensory overload.

Inspired by Temple Grandin’s book, “Thinking in Pictures,” Biel became facinated with people who see the world in a unique perspective. She explains the importance of educating others about sensory challenges, stemming from her own struggles as a child with issues such as discomfort in fluorescent lighting and noise in the cafeteria. Her first two books were geared towards giving parents and professionals best practices that were usually only implemented during a therapy session or within the school. Her new book “Processing Challenges: Effective Clinical Work with Kids & Teens” is more geared towards professionals in the autism field–psychologists, therapists, social workers, etc. Many times sensory problems are not recognized as the problem and the connection between the sensory challenge and the behavior gets lost. Biel pushes the idea that we need to start to really listen to what people with sensory issues have to say. In order to make a difference in these people’s lives, we need to:

  • Collaborate with individuals who experience the world and their bodies differently and work together
  • Empower people with sensory problems to become  more self aware to self-advocate
  • Share ideas, perspectives in magazine articles both in general parenting and other general consumer publications as well as autism specific publications
  • Speak to parenting groups and have professional workshops, including staff development around these issues

She argues, “There is still so much research, education, and awareness that needs to happen. We still ask students and workers to adjust to schools and workplaces rather than adjusting those environments to meet the need of the user. Parents still have pediatricians who trivialize their concerns about oversensitivities to noise, or clothing fabrics, smells, and so on. And they still have friends and relatives who think they’re indulging their child when they give them movement breaks or special allowances to accommodate their sensory needs…Every parent, teacher, and caregiver needs to know first and foremost that when a person is at the mercy of sensory issues, it can be extraordinarily difficult to behave as expected.”

Some basic tips for caregivers dealing with children on the spectrum are:

  • avoid harsh lighting
  • provide soft and seamless clothing
  • use a reassuring and firm touch
  • speak gently and patiently using clear language that is straightforward and free of unnecessary words 
  • do not demand eye contact when you are speaking
  • understand that they are not going to stop self-stimulatory behaviors just because you tell them to
  • assume competence even if the child/person has yet to prove this to you

Shema Kolainu- Hear Our Voices, offers its students a one-of-a-kind multisensory environment called the Snoezelen room. This room is specially designed to deliver stimuli to various senses using lighting effects, color, sounds, music, and scents. It provides a sense of calm to the child who may be experiencing some form of sensory overload and allows for student and teacher to work on communication, enhance their understanding of each other and build trust. Read more about our state-of-the-art room HERE!

For more resources on handling sensory challenges:

http://sensorysmarts.com/

http://sensoryprocessingchallenges.com/

To read the original interview with Lindsey Biel, click HERE

 



5-Year-Old Raises Awareness

Iris Grace and her cat Thula

Iris Grace is a five year old diagnosed with autism who picked up a paintbrush last year and has been making waves ever since.

“It was her first painting I noticed a difference in her painting compared to how you would normally expect a child to paint. She filled the page with color but with thought and consideration…We did’t think much of it at the time, we were just so happy to have found an activity that brought her so much joy,” Iris’s mom, Arabella Carter-Johnson, explains.

Her paintings have gotten attention and praise all across Europe, Asia, and America. In fact, many have been sold to private collectors for thousands of pounds each. Iris and her family use the profit to pat for art supplies as well as all of her therapies. Even Ashton Kutcher has tweeted about her artwork:

“She will watch water, trees, wind, leaves, flowers, birds, clouds…she is so interested in movement and how it changes things…I can see so much of what fascinates her in her art, I believe she can see things in more detail or notice things in more detail,” says Arabella. By following through on Iris’s interests, they are now also able to raise awareness about the kinds of resources and tools that we need to help children with autism. They even started their own activity club that meets every Saturday to provide support to children on the spectrum.

According to the American Art Therapy Association, art therapy is the process where “art media, the creative process, and the resulting artwork is used to explore feelings, reconcile emotional conflicts, foster self-awareness, manage behavior and additions, develop social skills, improve reality orientation, reduce anxiety, and increase self-esteem. A goal in art therapy is to improve or restore functioning and his/her sense of personal well-being.”

Shema Kolainu offers art therapy as part of their program to help children on the spectrum focus their thoughts and express themselves through mediums other than verbal communication, which can be very challenging for students on the spectrum. Read more about the therapies offered by Shema Kolainu, HERE.

To see more of Iris’s artwork, click HERE