For this blog, I consulted an Occupational Therapist (OT) with 21 years of experience in the field. I consulted Mrs. Vargas for her professional expertise on working with children that have Sensory Processing Disorders (SPDs), given her extensive experience. I strongly feel that SLPs working with children that have an Autistic Spectrum Disorder (ASD) comorbid with an SPD should consult an OT on strategies to help meet the child's sensory needs. Mrs. Vargas received her Bachelors at Fordham University and her Masters degree from Columbia University. She has worked with populations ranging from pediatrics to adults with an array of disorders (e.g. Autistic Spectrum Disorder, Cerebral Palsy, Traumatic Brain Injury, etc.). Mrs. Vargas has also worked in a variety of settings including homes, schools and hospitals.
Based on my experience, I think it is extremely important to consider an OT's input in order to help a child with ASD and a co-occurring SPD reach language or communication therapeutic outcomes. When a child has sensory needs that are not met accordingly, it could lead to more sensory disorganization. This could and will have negative implications as you attempt to elicit some form of functional communication, whether gestured or spoken. Mrs. Vargas defined "Sensory Processing" as the following: "It is how we take information in; how we process or put information together in order to respond in a way that allows us to carry out certain functions such as learning new skills or producing language." Mrs. Vargas indicated that children with SPD have difficulty interpreting information the way a typically developing child would. She added that those individuals without sensory difficulties are able to do things without thinking about it. However, they may have "sensory preferences." For example, one person might be able to concentrate in a noisy environment but another might require absolute silence. Mrs. Vargas explained that SPD is an umbrella term for the three following categories:
1. Sensory Modulation Disorder - Difficulty regulating responses to sensory stimuli
- Over-Responsiveness -- Children with sensory over-responsivity are very sensitive to stimulation as they feel the sensation too easily or intensely. They might feel as if they are being bombarded with information or over-stimulated. Mrs. Vargas stated that over-responsive children often have a "fight or flight" response to certain stimuli (e.g. being touched unexpectedly, loud noises). This can become a condition called "sensory defensiveness." This could also manifest itself through covering of the ears or withdrawal (SPDstar.org).
- Under-Responsiveness -- Children who are under-responsive to sensory stimuli are often quiet and passive. They also tend to disregard or not respond to stimuli. Mrs. Vargas indicated a child that is under-responsive might not respond to spoken language or to touch. Furthermore, the child might appear withdrawn, difficult to engage and/or appear self-absorbed because they do not detect the sensory input from their environment. For example, they may not perceive objects that are too hot or cold, and may not notice pain in response to falls, cuts or scrapes (SPDstar.org).
- Mrs. Vargas added that some children may be under-responsive to one sensory system or over-responsive to another.
- According to Mrs. Vargas, sensory modulation affects arousal level or level of alertness that is also important for learning. Throughout the day our arousal level is adequate so that we are able to take in information and learn new information. Some children might have a very low arousal level, which could make it difficult for them to learn and take information.
- Mrs. Vargas stated that some children have high arousal levels that can trigger "fight or flight." If the child is "too alert" they may not be prepared to learn because they are thinking about safety.
- Sensory Craving -- These children constantly seek sensory stimulation. They are constantly moving, crashing, bumping, and/or jumping. These children also have poor spatial awareness. These sensory seeking children are often thought to have Attention Deficit Hyperactivity Disorder (ADHD) and Attention Deficit Disorder (ADD) (SPDstar.org).
2. Sensory Motor Based Disorder: Difficulty with balance/motor coordination
- Postural Disorder -- These children have difficulty stabilizing their body during movement or at rest.
- Dyspraxia -- A child with dyspraxia has difficulty processing sensory information accordingly, which results in difficulty planning and carrying out motor actions (SPDstar.org).
3. Sensory Discrimination Disorder: This is the process in which specific qualities of sensory stimuli are perceived and meaning is attributed to them. It has to do with understanding precisely what is seen, heard, felt, tasted or smelled. Children with SDD have difficulty determining characteristics of the stimuli. They have a poor ability to interpret or give meaning to the specific qualities of stimuli. In addition, they have difficulty detecting similarities and differences between stimuli (SPDstar.org).
Mrs. Vargas stated it is important for children to be able to organize sensory information so that you as the clinician can get them to a place where they can respond. This is especially true for SLPs because if you can't manage the child's sensory needs you may have a hard time reaching language. She recommends the following, considering the example of a child with a sensory profile of Sensory Modulation Disorder:
- Under-responsive child, visual system: Strategy - use bright colors; bright lights; open windows and shades
- Over-responsive child, visual system: Strategy - use one color at a time; cover play table if it is colorful; environmental modifications such as darker room; organizing environment such as toys
- Heavy work has a calming effect and arouses an under-responsive system. The proprioceptive sense provides information through our joints, muscles, and ligaments about where our body parts are and what they are doing (as cited in http://www.autismspeaks.org/).
- Mrs. Vargas suggests the following types of heavy work that helps to orient the child: actively pushing/pulling, carrying materials or toys. For example for mealtime prep have the child open the fridge, wipe the table, etc. This helps the child organize the information they are receiving. Furthermore, using language while the child engages in heavy works helps orient them to the task at hand.
With regards to considering the needs of a child with ASD as part of speech and language therapy sessions, Mrs. Vargas said the following:
"Provide strategies so the child has some foundation in which they can attend and understand. We all need a certain level of arousal in order to attend and to form concepts to communicate."
Mrs. Vargas recommends the book: The Sensory Connection: An OT and SLP Team Approach
S. Vargas, personal communication, October 5. 2014.
Autism Speaks (2007). Tips for working with participants with Autism. Retrieved from http://www.autismspeaks.org/docs/family_services_docs/tips.pdf.
Star Center - Sensory Therapies and Research (2014). What is SPD? Retrieved from http://spdstar.org/what-is-spd/#sor.
When we don't have enough information about something we tend to make assumptions. I have often encountered this with the topic of bilingualism in both my practice with families and with colleagues. I always try to instill my colleagues with information regarding bilingualism in order to debunk some of their preconceived notions. This blog discusses myths and facts about bilingualism.
Myth: Learning two languages confuses children and impairs cognitive abilities.
Reality: According to Cummins' research, bilingualism enhances cognitive flexibility. In other words, bilingual individuals are better able to view things from two or more perspectives and to understand how others think (as cited in Hakuta, 1986). Bilingualism also contributes to better auditory language skills (i.e., they can discriminate sounds of a language more finely) than monolinguals, and they mature earlier than monolinguals in terms of metalinguistic abilities (Albert and Obler, 1978, cited in Cummins, 1994).
Myth: Children whose parents speak a language other than English will hurt their chances for academic success in this country.
Reality: It is always recommended that parents speak the language they are most fluent in to their children. This could be the native language or perhaps another language the parents speak fluently. If parents speak to their children in a language they are not fluent in, then they are providing models of a language that is not fully developed. Sometimes, because parents want to expose their children to more English, immigrant parents feel obligated to speak English at home even though they are not language proficient. This could have the undesired effect of delaying language development and have negative consequences for academic success.
Myth: The more exposure one has to a language, the more quickly one will learn it.
Reality: Mere exposure to a language does not guarantee proficiency. If we are exposed to language input that is not understood, much of what is said (or written) will not be absorbed. For language learning to take place, the input must be "comprehensible" or language input must be modified so that it can be understood (as cited in Krashen, 1981).
Myth: A lot of immigrant children have learning disabilities, not language problems. They speak English fine but they are failing academically.
Reality: We often encounter children who appear to speak English without difficulty. Yet when they are in a classroom setting, they don't seem to grasp the concepts. However, many people fail to realize that there are different levels of language proficiency. The language needed for face-to-face communication (Basic Interpersonal Communicative Skills, BICS) takes less time for proficiency than the language needed to perform in cognitively demanding contexts such as an academic setting (Cognitive Academic Language Proficiency Skills, CALPS). It takes a child approximately two years to develop BICS or the ability to communicate socially in a second language, but it takes 5-7 years to develop academic language or CALPS.
There has been extensive research in the area of "Bilingualism" and below are some well known researchers:
Vera F. Gutierrez-Clellan
Reference: Common Myths about Bilingualism. Myths about bilingualism in individuals. Retrieved from http://ccat.sas.upenn.edu/~haroldfs/540/bilingtl/myths.html.
Most children have the capacity to learn more than one language, even if they have language delays. It should be noted that language delays do not discriminate. If there is a problem in one language, chances are you will find it in the other language as well. However, there are many beliefs about bilingualism and language delayed children, including that it can cause confusion or hinder language acquisition. Learning two languages at once does not confuse a child, and I have often heard from many families that they were told learning two languages could in fact confuse or impede language development in their language delayed child. When a child is diagnosed with Autism and has little to no language, the question of using one or two languages arises amongst most families. This can be a conflicting decision especially if the family is not English proficient. According to Kremer-Sadlik (2005), who authored a paper focused on Multilingualism and high functioning children with ASD, parents of children with Autism were often advised to speak in English only, regardless of the families' language proficiency. This was according to parent surveys and interviews (as cited in Sigman and Capps 1997/1998). Although these interviews were many years ago, this still seems to be a common trend.
However, theories in bilingualism and cognitive development such as that of Cummins "Threshold" and "Interdependence Hypothesis" contradict use of one language only. These theories indicate that if the home language or L1 is underdeveloped, then there will also be limitations for L2. According to Cummins' theories, low levels of L1 and L2 increases a child's risk for negative cognitive effects. So if you ask a family whose not English dominant to use English only with their language delayed child, how much can they actually help in developing the child's English language skills? If you ask them to speak the native language, they can help build a strong L1 foundation which can help facilitate the L2 (English) development. In Kremer-Sadlik's (2005) article, a clinician working in a school for children with ASD in India was interviewed. The clinician reported that the two official languages of the school are English and Hindi. However, according to the clinician about 50% of the children in the school speak a third language. Kremer-Sadlik states that regardless of the language impairments, multilingual environments do not hinder language acquisition. According to the clinician interviewed, despite the impairments in the multilingual environment the children do acquire language. He also emphasized that this approach raises awareness about multilingualism and that it is a "normal circumstance" rather than something that would delay a child further.
Through my own experience, I worked with a family whose child was diagnosed with ASD, although it was not a severe case. The family opted not to use the home language because they wanted to focus on English, the majority language. They wanted to focus on English only because this is the language the child would use in the community. However, he was exposed to the home language through parent interactions. At one point in therapy, after developing a large lexical inventory and being able to produce multiword utterances in English, the child began to spontaneously produce words in the home language. Gradually his vocabulary began to grow in the home language. Although the family decided to use English only in the beginning this child had the benefit that his parents were proficient in English as well. So the family was able to provide excellent language models. However, when the families are not English proficient and the child is developing a language which is not the home language, this can lead to language barriers and a disconnect between the child and family.
Reference: Kremer-Sadik T. To be or not to be bilingual? Autistic children from multilingual families. 2005. http://www.lingref.com/isb/4/096ISB4.PDF.
When providing services for a bilingual or multilingual child, the therapist should have native or near native language proficiency. In addition, the therapist should have knowledge and skills about second language acquisition, language development for the particular language, etc. ASHA's "Knowledge and Skills Needed by Speech-Language Pathologists and Audiologists to Provide Culturally and Linguistically Appropriate Services" has documented all the knowledge and skills required. Take a look at ASHA's document for in-depth information on this topic.
- If you are a bilingual therapist and the family does have a strong foundation of the English language or at least one of the parents does and they are able to model a rich vocabulary for that child in English, you can do therapy in both languages. However, if the family wanted English only I would explain the benefits of bilingualism and the importance of the child being able to communicate with the other parent that does not speak English.
- If you are a therapist without native or near native proficiency working with a bilingual child then according to ASHA you should:
- Obtain information on the features and developmental characteristics of the language(s)/dialect(s) spoken or signed by the client/patient (see Language section).
- Obtain information on the sociolinguistic features of the client's/patient's significant cultural and linguistic influences
- Develop appropriate collaborative relationships with translators/interpreters (professional or from the community): - In other words you can use a translator/interpreter for therapy, which may be more common in some states than others.
- Maintain appropriate relationships among the clinician, the client/patient, and interpreter/translator.
- Ensure the interpreter/translator has the knowledge and skills in the following areas:
- Native proficiency in client's/patient's language(s)/ dialect(s) and the ability to provide accurate interpretation/translations
- Familiarity with and positive regard for the client's/patient's particular culture and speech community or communicative environment
- Interview techniques, including ethnographic interviewing
- Professional ethics and client/patient confidentiality
- Professional terminology.
- Basic principles of assessment and/or intervention principles to provide context to understand objectives.
As a side note, if you spend enough time in the home you will be able to tell how strong the family's English language skills are (dominance). Some families might say they speak more English because maybe they want their child to learn English, therefore want therapy in English. However, speech therapy is not about learning a language. Below I list some considerations in helping to determine the family's English language dominance.
- How long has the family been living in the United States?
- How acculturated is the family?
- Is the family proud of their heritage?
- Does the family watch TV in their native language or English?
- What language does the family speak in their community?
- How does the family feel about bilingualism?
- If there are older children in the home, do they speak both languages? With whom do they speak each language?
- How often does the family visit their native country?
Just because a family has been living in the U.S. for many years by no means is an indication that English is the home language. Remember, there are many communities in which families do not need to learn English. In addition, make your own observations even if the family tells you they speak English more in the home. As an SLP, you want to make sure you are building the bridges for communication between the child and their family and not creating language barriers that can lead to a disconnect.
What scenarios have you encountered regarding bilingualism and use of language in therapy?
Reference: ASHA (2004). Knowledge and Skills Needed by Speech-Language Pathologists and Audiologists to Provide Culturally and Linguistically Appropriate Services. Retrieved from http://www.asha.org/policy/KS2004-00215/#sec1.3
I thought it would be interesting to explore the history of autism. What is today known as Autistic Spectrum Disorder has evolved through time and drawn so much attention because of the rising prevalence, especially across the United States.
Swiss psychiatrist Eugen Bleuler first used the term "autism" in 1908. He used it to describe a schizophrenic patient "who had withdrawn into his own world." In the 1940s, there were two pioneers that researched autism, Hans Asperger and Leo Kanner. They described what seemed to be on opposite ends of the spectrum. Asperger described children with high functioning abilities while Kanner described children with more significant delays.
- In 1943, Leo Kanner studied 11 children. The children had difficulties with social interactions and adapting to changes in their routines; good retrieval, resistance and allergies to food; high intellectual potential; and echolalia. They were sensitive to stimuli (especially auditory) and had difficulties in spontaneous activity.
- In 1944 Hans Asperger studied a group of children. His subjects also resembled Kanner's descriptions; however, they did not have echolalia. Instead they spoke like adults. He also mentioned that many of the children were clumsy and, unlike typically developing children, had fine motor difficulties.
- In the 1950s, Bruno Betetlheim claimed that the problem in "autistic" children was "due to coldness of their mothers." Kanner and Bettelheim both worked towards a hypothesis demonstrating that autistic children had "frigid" mothers.
- Bernard Rimland, a psychologist and parent of a child with autism, disagreed the cause of his son's autism was due to poor parenting skills. In 1964, Bernard Rimland published, Infantile Autism: The Syndrome and its Implications for a Neural Theory of Behavior.
- Autism began to draw more attention in the 1970s. During this time period, many parents confused autism with mental retardation and psychosis.
- In the 1980s, research on autism became more prevalent. By the 1980s it was becoming more evident that parenting skills had no role in the root of autism and the idea of a neurological disorder began to emerge.
- Ole Ivar Lovaas studied and contributed to behavioral analysis and intervention of children with autism, what we know today as Applied Behavioral Analysis (ABA).
Although not scientifically studied until the 20th century, what has evolved into "Autistic Spectrum Disorder" has been explored for over a century now. How do you think it will continue to evolve?
Reference: Mandal A. Autism History. News Medical. 2014. www.newsmedical.net.
As early intervention clinicians, we are in the home once or several times per week working with each child. After some time, we get to know the children on our caseload so well, including their preferences for toys, their behaviors in response to specific tasks, what sets them off, etc. In time, you also start to differentiate typical behaviors or responses from those that are not so typical such as when you suspect red flags for an Autism Spectrum Disorder which is a serious cause for concern. However, when there is more than one therapist working with a child, differences in opinions may arise regarding the child's development including the "red flags."
In this blog, I wanted to emphasize the importance of working collaboratively and understanding one another's concerns (therapists) especially regarding red flags for autism. It is within our scope as clinicians to make referrals for a psychological evaluation when warranted. As mentioned above, we are in the home week after week and get to know that child unlike their pediatricians. The children may visit their pediatricians every couple of months and for a short time slot. On the other hand, we get to see that child in their natural environment and across different settings. I feel comfortable saying that we get a pretty in-depth look at how the child is developing because we are in the home week after week. Not only do we make weekly observations about progress but the parents are also great resources on how the child is developing.
When I am concerned about a child's ability to develop language and suspect red flags, the first thing I want to rule out is an underlying problem such as autism. This is done through a referral for a psychological evaluation. Before I make a referral in which the family agrees to, I consult the team and express my concerns. It is important that everyone is on the same page because as clinicians you want to make sure you have a similar picture of the child's true abilities, especially when you present concerns to the family. If one clinician is concerned and the other is contradicting what you are expressing to the family, then this creates a problem. It can also generate doubt on behalf of the family regarding your clinical opinion. No family wants to hear there is a problem with how their child is developing, so don't doubt the family might side with the clinician that is contradicting you. This can especially be the case when the family is unsure and is afraid of what they might learn if the child is evaluated. Something else to consider is how long each therapist has been working with that child. If you have been working with that child for a longer period of time do not doubt your concern. Chances are that you know that child a little better than the newer clinician.
I would like to end on this note: do not second guess yourself because of someone else's differing clinical opinion, especially when they don't know nearly as much about the child as you do. All you can do is present your concerns to the family and they ultimately decide if they want to go through with a psychological evaluation or not. Even if there are differing opinions, it is important you discuss it with the family so that you have done the best that you could for that child.
Recently, I came across a very helpful handout on things a family should know before making an early intervention referral. Often, parents are referred to Early Intervention (EI) by their child's pediatrician or some make the referral themselves. I think it is important to have all the facts and know what to expect from the program before initiating the process. This can help the family better understand what Early Intervention has to offer their child. Below I mention the points I thought were most important. Then, I add general information about services that I feel are important.
- You and your Early Intervention team create the Individualized Family Service Plan (IFSP)
The IFSP is the document that states the family's concerns regarding the child's development. The IFSP functional outcomes or long term goals are derived from the family's concerns and priorities. The service coordinator helps to organize the goals.
- Not all children will qualify for Early Intervention even if they do have a developmental delay
There is specific criteria, which may vary by state, that dictates whether or not the child will qualify for services. For example, in New York State a child must have a 25% delay in two domains or a 33% delay in one area. A child diagnosed with autism will automatically qualify.
- More sessions are not always better
The child's learning takes place between sessions so it is important to carry strategies over into daily routines for generalization. You can have up to five sessions a week but if strategies are not carried over by the family then progress will be minimal.
- Your EI team will work with anyone that takes care of the child during the day
Whether it is a babysitter, daycare, or relative, the early interventionist will work with them and have conversations about strategies, difficulties and the child's progress. It important that the child's caregiver be involved in therapy in order to carry over strategies.
- If the family is unhappy with any of the child's therapists or the child's progress the family may request a change in therapist.
- A justification to increase services can be submitted if the child is not making enough progress.
- Once functional outcomes have been achieved they can be updated in the 6 or 12 month IFSP meeting (may vary state to state).
NYC Health. Eight Things a Parent Should Know Before Making a Referral to Early Intervention. Retrieved from www.nyc.gov.
In a previous blog, I explained the differences between the symptoms of autism and Sensory Processing Disorder (SPD). Recently, I came across an article that researched neural connections of children with autism and SPD. As cited by Bunim (2014), Pratik Mukherjee, a professor of Radiology, Biomedical Imaging and Bioengineering at the University of California, San Francisco, found that SPD and autism have similar neural underpinnings, as they have overlapping symptoms, but they are also distinct. Bunim (2014) states it is hard to "pinpoint" SPD because about 90% of children with autism are reported to have atypical sensory behaviors. Surprisingly, SPD is not listed in the Diagnostic Statistical Manual (DSM).
Elysa Marco, MD, cognitive and behavioral child neurologist at UCSF Benioff Children's Hospital, San Francisco, and the study's corresponding author, emphasized that SPD is not yet a recognized condition. She states that this can impact the types of services children with SPD receive in their academic settings. Children with SPD struggle with processing stimulation. This can result in a wide range of symptoms including hypersensitivity to sound, sight and touch, poor fine motor skills and easy distractibility. According to their study, some children with SPD demonstrated higher levels of brain disconnection in some sensory-based tracts when compared to kids with a diagnosis of only autism.
The study examined the structural connectivity of specific white matter tracts using the following subjects: 16 boys with SPD and 15 boys with autism between the ages of 8 and 12 and compared them with 23 typically developing boys of the same age range. An advanced form of MRI called diffusion tensor imaging (DTI) was used to measure the microscopic movement of water molecules within the brain. This provides information about the brain's white matter tracts. Researchers mapped out specific regions of the brain that were affected for children that have autism, SPD, and those with both disorders. Findings revealed that both the SPD and autism groups showed decreased connections in multiple parieto-occipital tracts. These areas handle basic sensory information in the posterior area of the brain. However, only the autism group showed impairment in regions of the brain that plays a critical role in social-emotional processing. Subjects with isolated SPD showed decreased connectivity in the basic perception and integration tracts of the brain that serve as connections for the auditory, visual and somatosensory (tactile) systems. All of these systems are involved in sensory processing. The researchers claim "DTI can serve as a powerful clinical and research tool for understanding the basis of sensory neurodevelopmental differences."
I think it is important to differentiate between the two disorders to ensure that children receive appropriate services. What do you think about SPD not being listed in the DSM?
Bunim J. Kids with Autism, Sensory Processing Disorders Show Brain Wiring Differences. 2014. http://www.ucsf.edu/news/2014/07/116196/kids-autism-and-sensory-processing-disorders-show-differences-brain-wiring.
Gluten Free/Casein Free (GFCF) Diet is an alternative treatment for children with Autism Spectrum Disorder (ASD). Alternative medicine is any practice that is put forward as having the healing effects of medicine. However, it is not based on evidence gathered using the scientific method. There has been little research conducted to support that the GFCF diet improves symptoms in children with ASD. Nonetheless, despite the lack in research there are families that attest the GFCF diet has helped improve ASD symptoms. The GFCF diet restricts the consumption of gluten found in barley, wheat and rye and casein found in milk and dairy products. Penn State researchers from the College of Medicine have shown that children with autism have gastrointestinal symptoms. According to theory, children with autism process peptides and proteins found in gluten and casein differently than other children that causes GI problems and is believed to trigger behavioral problems.
Penn State researchers surveyed 387 parents and caregivers of children with ASD. They had the parents complete a 90-item online survey about their children's GI symptoms, food allergy diagnoses, and suspected food sensitivities. They also surveyed how well the children adhered to the gluten free/casein free diet. Based on the parent surveys, researchers found that the gluten free/casein free diet was more effective in improving ASD behaviors, physiological symptoms and social behaviors for children with GI and allergy symptoms compared to those without symptoms.
I have worked with some families that reported positive behavioral changes and improvements in communication with the GFCF diet. Other families had learned about the GFCF but were not interested in pursuing it. Many families were not aware this type of diet existed. The GFCF type of diet can be discussed with your developmental pediatrician or a nutritionist for professional advice. The following is advice from one of the researchers, Laura Cousino Klein, associate professor of biobehavioral health and human development and family studies:
"If parents are going to try a gluten-free, casein-free diet with their children, they really need to stick to it in order to receive the possible benefits," she said. "It might give parents an opportunity to talk with their physicians about starting a gluten-free, casein-free diet with their children with ASD."
Pennesi CM, Klein LC. Effectiveness of the gluten-free, casein-free diet for children diagnosed with autism spectrum disorder: Based on parental report. Nutritional Neuroscience, 2012 DOI: 10.1179/1476830512Y.0000000003. Retrieved from http://www.maneyonline.com/doi/pdfplus/10.1179/1476830512Y.0000000003
Gluten-free, casein-free diet may help some children with autism, research suggests (2012). Retrieved from www.sciencedaily.com.
Often times when I meet a family that has a child with a diagnosis of Autism Spectrum Disorder (ASD), especially when the child is over 24 months and non-verbal, I wonder a few things: was the child ever screened? Why was the child not identified as high risk or red flagged for ASD by their pediatrician? Did the pediatrician screen the child but the family did not want to move forward because they are in denial? There are so many reasons why a child might not be screened ... Screenings are especially important when the families come from low socioeconomic status with limited resources and limited access to information or are unaware of what potential symptoms of ASD look like (see my previous blog on early signs of autism in infants).
Keep in mind that although the American Academy of Pediatrics (AAP) has general guidelines for ASD screenings, instruments used and services for children with ASD may vary from state to state depending on the Department of Health (DOH) guidelines, including insurance mandates for your particular state.
Some general clinical practice recommendations for pediatricians are the following as per the CDC are the following:
1. Routinely screen for ASD during critical stages in a child's development.
- The AAP recommends screenings during well care visits at 18, 24, 30 months.
2. Use of a validated instrument to screen for ASD. The M-CHAT is discussed below as used in New York under the DOH guidelines, but your pediatrician may use a different instrument, and it may vary from state to state.
- The M-CHAT and follow-up interview is conducted in two steps and the purpose is to identify a potential risk for ASD. The M-CHAT screen and follow-up parent interview is used to screen toddlers between 16 and 30 months. The M-CHAT includes 23 yes/no questions regarding the child's behavior and development. For children whose scores on the M-CHAT indicate high risk for ASD, the M-CHAT follow-up parent interview should also be conducted which takes no longer than 15 minutes. The M-CHAT is very basic to use and can be given by a provider with minimal training in ASD.
3. Steps for referring children for further evaluation if the screen suggests they are at risk for ASD.
- Further evaluation may include a referral for Early Intervention to assess overall development and a psychological evaluation if warranted. This may vary from state to state depending on your state's DOH Guidelines, although AAP's recommendations are pretty standard across the board for ASD.
4. Siblings of children with autism should be closely monitored for social, communication as well as play skills.
*If you suspect your child is not developing typically and are worried about potential ASD, consult your pediatrician and ask them to screen your child. Otherwise, they can refer you to Early Intervention for an evaluation. During the developmental evaluation you can raise your concern about ASD and a referral for a psychological evaluation can be made.
Centers for Disease Control (CDC). Recommendations and Guidelines. Retrieved from www.cdc.gov
Autism Screening by Health Care Providers in New York State. Retrieved from http://www.health.ny.gov/community/infants_children/early_intervention/autism/autism_screening_for_toddlers.htm
According to Social Security, your child younger than 18 year of age can qualify for supplemental security income (SSI) if they meet social security's definition for disability and if their income falls within eligibility limits. This benefit can provide additional support for families with limited resources. In my experience, I have often found that families are often unaware of this benefit. I mention this information to the families that I work with that have a child with autism. In addition, I refer them to their Service Coordinator for additional information and guidance in the application process.
Social Security Rules about Income and Resources
- Household income and resources are factored in the decision making process.
- If household income and resources are more than allowed amount, benefits will be denied.
SSI Rules about Disability
- The disability must have been or is expected to be disabling for the next 12 months.
- The child's disability must be marked and with severe functional limitations.
Providing Information about Your Child's Medical Condition
- Information will be collected from your child's doctors, teachers, therapists and other professionals that have information about the child's medical condition.
- Bring medical or school records when you apply for benefits.
- Information collected will be sent to the Disability Determination Services.
- Doctors and other trained staff from your state will review the information.
- A medical exam may be necessary if medical and school records provided are not sufficient to make an eligibility decision.
- The decision making process can take anywhere from 3-5 months.
Please note that if your child qualifies for benefits, according to the law, the child's medical condition will be reviewed from time to time to verify the disability persists.
After 18 Years of Age - Social Security Disability Income (SSDI)
- Different medical and nonmedical rules apply.
- The household income is not factored, only adult's income with the disability.
- If your child did not qualify before 18 due to high household income, they may qualify as an adult.
*Additional Information regarding benefits after 18 years of age can be found on www.ssa.gov.
For this blog, I interviewed a Burmese mother whose child was diagnosed with a mild-moderate autism at 23 months. He is 3 years old now and has been receiving speech therapy, special instruction and occupational therapy for 13 months. He was diagnosed in May 2013.
Question: How did you know something was wrong with your son?
Answer: The Burmese mother explained that she started noticing a regression in language and his ability to follow directions at approximately 18 months. She said that at 14/15 months her son was able to follow simple commands and was producing single words. She stated that he stopped imitating language and became frustrated when language demands were placed on him. She added that he was not pointing as an alternative means to communicate either. At 8-14 months her son used to respond to different nicknames, and at 18 months he stopped responding altogether. She also noticed that her son was afraid and very uncomfortable around strangers. She decided to get her son evaluated when he was 21 months of age.
Question: What did you do once you suspected there was a problem?
Answer: The Burmese mother said she began to do some research and came across the Early Intervention program. The Early Intervention program referred her to a service coordinator who helped set up an evaluation for her son. The evaluation included a developmental and speech/language evaluation. She said she told the developmental evaluator that she suspected the problem was more than a language delay. She said the developmental evaluator agreed with her suspicion. Next, the developmental evaluator made a referral for a psychological evaluation. It was during the psychological evaluation that her son was diagnosed with autism.
Question: What was your initial reaction?
Answer: "I did not know what to expect," she responded. She added that she began researching autism online and felt overwhelmed. She said that the more she read online the more concerned she became, especially when she thought about her son's future, including his education. "I spent two weeks crying, and I did not know what to do," she said. "Crying does not help," she later thought. She added that she was afraid her friends and family would look at her differently because of the diagnosis. However, she thought that she must develop a "thick skin" and decided to join a support group.
Question: Have your friends and families been supportive?
Answer: She stated that her Burmese friends were concerned and offered to help in any way they could. She stated that in Burma, autism is not well known and that it was difficult to explain what it was. She said some perhaps thought it was "poor parenting" because of the comments they made. She said "they don't understand how much you are working, it a 24-hour job," and added, "some don't understand."
Question: How has the diagnosis affected your social life?
Answer: She responded by saying that she and her husband don't get to hang out with their friends because of their busy schedules. She added that with therapists (e.g. special instructor, speech therapist, occupational therapist) going in and out of their home it is hard to find time for extracurricular activities. She said being the parent of a child with autism is a 24-hour job. However, she must put the label of autism aside and "let him be a child."
Question: Has therapy helped?
Answer: She responded by saying, "therapy has been very helpful and he has responded well." She added that when he began speech therapy he had no more than 20 words and that currently she cannot keep track of the words in his vocabulary. She said he speaks in 6-7 word sentences such as when she asks him questions. For example, when she asks him how he brushes his teeth, he responds with the following: "First, you put the toothpaste on the toothbrush. Then, I brush my teeth."
The interview ended with these words:
"According to my experience and what I have gone through so far, it is important to accept the reality. I know it is painful but you have to accept it. Allow yourself to be sad but you have to help your child. Nothing matters more than your child."
Once the children on your caseload are close to turning 3 years old, parents have many questions regarding preschool, known here in New York as Committee on Preschool of Special Education, or CPSE. Many questions as well as concerns may arise, especially if their child with autism is nonverbal. Families may feel anxiety consequent to the fact their child does not produce language and may not be able to communicate his needs. Some families might fear something could happen to their children and, due to language deficits, they cannot communicate what has happened to them. Other families may fear their child might not adapt well to new routines or a new environment. Personally, I try to help families transition by answering their questions and encouraging them to seek out the service coordinator for further information. I also encourage them to research the schools and get a tour during which they can learn more about the school and program overall.
Families might feel more comfortable discussing their concerns or questions with you than with the service coordinator. This may be due to the fact that they have established more rapport with you. Perhaps they feel you know their child well enough to give your opinion or they may have a certain level of trust in you. Even though we are not the service coordinators, I think it is important to try to answer their questions to the best of our ability which can help ease some of their concerns or anxiety about transitioning. However, when you are unsure about how to answer their questions just refer the family to the service coordinator for a more accurate response. Some frequently asked questions I have experienced are the following.
Question: What kind of classroom setting is appropriate for my child?
Comment: My response depends on the child's level of functioning. If the child can produce functional language then I explain that a classroom setting in which the other children have similar language skills would be appropriate. I explain that this is important because the child can learn language from other children as well especially if they have more language. Often, if the child is not producing language and has cognitive delays as well they will most likely be placed in a small setting with 12 students and a few paraprofessionals. In this case, I explain that a small classroom can help meet the child's needs.
Question: Do you recommend any schools?
Comment: I only recommend schools that I am familiar with because this can be risky. Families may take our word very highly because of their level of trust with us as service providers, so it is important to know enough about the school in order to make a recommendation. I also mention that they should consider the distance especially if the child is going to get bussed to the school. I explain that if the school is far then they should find out if their child would be one of the first or last to be picked up. Some children may not respond well to sitting on a bus for a long period of time or parents may not want their child sitting on the bus for long, especially since they may have a difficult time with their child's transition to the school setting.
Question: Can I accompany my child in school the first few days?
Comment: I encourage the family to speak with the school administration and find out what kind of options they have. I explain that this depends on the school, as each may have different policies. I add that they may allow some time in the classroom to help with transitioning but emphasize that they must follow up with the school as they can provide them with a more accurate response.
Families generally appreciate any information you might be able to provide and seek out our opinions because they confide in us. If you can help ease some of the anxiety that accompanies the transition of a child with autism to preschool then I think you are doing so much more for the family than you can imagine. They will remember you for that and all the great work you did with their child.
What kinds of questions have families asked you?
As we can imagine, and as some of us have experienced first hand, families undergo an enormous amount of stress and anxiety upon a diagnosis of autism. A report that diagnoses a child can be extremely overwhelming for a number of reasons. One reason may be that families feel they do not recognize the child described in that diagnostic report. Generally speaking, in my experience as a speech evaluator, I always explain to families how valuable their feedback is during the evaluation as they can help paint a clear picture of what their child's capabilities are, in addition to direct clinical observation. After all, parents are the experts on their children. However, it is important to keep in mind that although parents know their child best they may very well report their child has certain skills when in fact they are not evident. Therefore, it is important to consider their feedback but not to rely on it solely.
The following are some tips for clinicians working with families that have conflicting feelings about the psychologist's diagnostic report
- Explain they know their child best
- Emphasize the evaluator is reporting on observed behaviors and certain skills which are expected at the child's age
- Explain the evaluator is there for such a short period of time and may not get a full picture of the child's abilities
- Ask them not to get too caught up in the "language" or labels
- Reinforce the idea that labels do not define the child
- Explain, child first, before disability - do not attribute all behaviors to the diagnosis
- Focus on the child's strengths
- Encourage the family to speak with the psychologist for clarification or if they are uncomfortable with the report
- If the parent is uncomfortable with speaking to the psychologist, encourage them to speak with the service coordinator whom they may have established rapport with
- Speak to the service coordinator so that they can speak with the family or perhaps to provide information about receiving counseling from a social worker, if necessary
As a clinician working in the home, it is important not to mislead families about the diagnosis or put the psychologist's clinical findings into question. Listen to what families have to say, and you can give them your clinical opinion if you are comfortable doing so but there is a fine line and you should be very careful with the language you use.
Sensory Friendly Films emerged in 2007, when a Maryland parent took her young daughter to a matinee. The parent picked an early showing because she assumed there would be fewer people. When her seven year-old daughter saw her favorite actor she began to flap her hands, dance, and jump up and down. Unfortunately other audience members complained and the manager asked them to leave.
The parent was frustrated and upset to say the least. Even worse, her daughter's movie experience ended up as a negative one. The parent thought of all the other families that had probably experienced such negativity. The following day the parent called her local AMC Theatre in Columbia Maryland and she asked if the manager would be willing to set up a special screening for children with autism. The manager agreed and made some additional accommodations to make the movie even more sensory-friendly. The manager later contacted AMC's headquarters to share the ideas that were received well. Headquarters contacted the Autism Society of America and the two worked with affiliated theaters in towns all over the U.S.
The purpose of the special screenings is to provide families a comfortable environment for their children to enjoy a movie. Non-diagnosed individuals are also welcomed. Special screenings are held once a month, mostly on Saturdays for 10am showings. In order to provide a more comfortable environment theater lights are turned up slightly and the sound slightly decreased. These sensory friendly films are generally G or PG-rated. Screenings skip previews or advertisements. Parents are also permitted to bring in their own food or snacks in case there are special dietary needs. Audience members are also permitted to "get up and dance, walk, shout or sing." AMC's "Silence is Golden" policy is not enforced unless safety is put into question. The goal is for families to relax and enjoy a movie without worrying that they might disturb others or that other audience members might complain. This is a great opportunity for families to meet. Also, this allows families to connect with others who they can relate to and serves as a means of support for families.
You can find a listing of Sensory Friendly Films directly on AMC's website. They are offered nationwide at select theaters. Local theater managers can be reached for details about local showings or if you have any particular questions.
Have you taken your children to these special screenings? If so, what has your experience been like?
Reference: Autism Society. Sensory Friendly Films. Retrieved from http://www.autism-society.org/get-involved/events/sensory-friendly-films/