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/
Earlier this year, the American Psychiatric Association (APA) released the DSM-V that introduced new guidelines for diagnosing children with autistic spectrum disorder (ASD). As you may well be aware, 1 in 88 children in the U.S. are diagnosed with Autisms; this new diagnostic criteria will affect many children and their families. Changes to diagnostic criteria will affect the number of children who could receive services. This is due to the fact that the DSM-V is more restrictive as far as diagnosing. However, there are many children who are also misdiagnosed or mislabeled and this new diagnostic criteria may help reduce those occurrences.
In comparison to the DSM-IV, the DSM-V has limitations in criteria for diagnosing children with ASD. The three subgroups, autistic disorder, Asperger’s and pervasive developmental disorder- not otherwise specified (PPD-NOS) were eliminated. However, a new category was added to the DSM-V, Social Communication Disorder (SCD). The SCD diagnostic criterion includes impairments in verbal and non-verbal communication but with no other characteristics linked to autism. In order for a child to be diagnosed with ASD they must have persistent deficits in two areas, social communication/interactions and restricted, repetitive patterns of behavior, interests, or activities. Each area has a number of symptoms that must be prevalent in order to diagnose. According to the APA some children that would have met criteria under Asperger’s would fall under the new SCD in the DSM-V. The DSM-V also includes severity ratings ranging from 1 being mild, 2 being moderate and 3 being on the more severe end. The severity rating is dependent uponthe amount of support needed by the child.
Columbia University’s Kristina Kulage, MA, MPH, director of the Office of Scholarship and Research Development at Columbia University School of Nursing, and colleagues reviewed 418 studies looking at autism diagnosis. Fourteen of those studies met inclusion criteria. The study was published in the Journal of Autism and Developmental Disorders. Researchers found that 31% fewer children were diagnosed that would have met criteria under the DSM IV. According to Kulage et al (2014) as cited by Whiteman (2014) of Medical News Today, there was a 22% drop in AD diagnosis and a 70% decrease in PDD-NOS diagnosis under the DSM-V manual, compared with what there would have been under the DSM-IV-TR manual. According to Whiteman (2014) findings from this study suggest thousands of children with developmental delays without an autism diagnosis, could potentially miss out on social services, educational support and medical benefits. Kulage stated, "We are potentially going to lose diagnosis and treatment for some of the most vulnerable kids who have developmental delays,"
Regarding changes to the DSM-V, it is important to use the "new language" associated with the DSM-V so we ensure the correct information is provided to families. Families of newly diagnosed children may not be aware of these changes for various reasons. For example, families from low socioeconomic status (SES) may have limited access and rely on family and friends for pertinent information. Perhaps, families have limited access to information in their native language. Many families view clinicians as a wealth of knowledge and depend on us accurate information. So it is important that we can deliver!
Whiteman, H. (2014). New APA autism guidelines reduce diagnosis by more than 30%. Medical News Today. Retrieved from www.medicalnewstoday.com
Autism is considered a life-long disability. I often envision parents taking care of their autistic children for the rest of their lives unless placed in a residential home setting. However, over the recent years studies are indicating the potential for outgrowing autism. A study conducted by Deborah Fein, a Connecticut professor of Psychology and Pediatrics, and colleagues reported children can outgrow autism. In the January 2013 issue of The Journal of Child Psychology and Psychiatry, Fein and colleagues studied groups of children that were screened at 2 and 4 years of age. Of the 73 toddlers screened and diagnosed with autism, 18% (13 children) no longer qualified for a diagnosis at the age of 4. Fein reported that children no longer qualified by the age of 4, after years of intensive behavioral therapy. However, Wang (2013) reports that experts discourage early diagnosis because of mislabeling.
According to Fein, her studies reported that as many as 10%-20% of children in her study recovered from autism. This was following years of intensive behavioral therapy, in addition to speech and occupational therapies. However, despite that recovery rate she warns that most children do not recover, so ‘recovery' should not be a realistic expectation for a majority of children. Despite the recovery rate Fein reported, she states they are in the "very early stages." I certainly would not announce this study to families because I would not want to give false hope because you really do not know if that child will "recover" so to speak.
This is a highly debatable topic since studies are limited in this particular area. In any case, I look at the children on my caseload and wonder about their potential to "outgrow" autism and their ability to develop language. In my experiences, I once encountered a parent that spoke of her son that had been diagnosed with autism as a toddler. The parent stated their child seems to have outgrown "symptoms." The parent attributed the child's significant improvements to early intervention services. Furthermore, the parent added that symptoms were so mild they could not be detected at once. Unfortunately, I personally have not been able to follow any children that were diagnosed early on.
I agree that providers should be cautious with diagnosing children early due to the issue of mislabeling. Caution should also be taken with making psychological referrals especially when you have recently begun working with the child. I think it is important to really get to know that child so that you are comfortable with making that psychological referral. Families go through an enormous amount of stress when the topic of autism is brought up, so you want to consider all factors prior to bringing up a psychological referral if possible. I would love to hear about your experiences in this area! Have you followed any children that were diagnosed early on and later "outgrew" autism? Please share!
Reference: Wang, S (2013). Who Can Outgrow or Recover from Autism. Health and Wellness. The Wall Street Journal. Retrieved from www.wsj.com
Deficits in communication are often the first thing a family notices when their child has reached a certain age and is not reaching expected milestones. In my experience, speech therapy is also often a priority to the family when it comes to the several therapeutic services that a child with a diagnosis of autism receives. This is especially true when the child is nonverbal or minimally verbal. As clinicians we may even put a lot of pressure on ourselves because we hope that child will speak one day.
A recent study in Pediatrics by the Kennedy Krieger Center for Autism revealed that 70% of children with autism achieved phrase of fluent speech by age eight. These were children with severe delays. According to the CDC 40% of children with ASD do not acquire language. By 12-18 months 25-30% of children diagnosed have some language and then lose it by 18 months. These types of statistics are something that I never share with the family at first. Several months in, if the parent brings it up, I explain that some children develop language, others develop language but late, and unfortunately some children don't develop language. The reality is that you never know if the child you are working so hard with may or may not develop language. 40% is a bit high, and that can certainly scare a family or increase the family stress. I like to side on the positive side and give the family hope because for most that is all they have when they are given the news their child is autistic.
I have always thought that highlighting the positives as far as communication is concerned is beneficial to the family. Explaining to families that small steps are good steps. This helps keep them on the positive side of things. There is only so much that we can do as clinicians. In some cases, we may feel that our efforts were not fruitful because perhaps the child didn't produce language in the end but everything you work on in between is also just as important, the building blocks to language. Also, some clinicians might feel pressure from the family. This is why it is important to explain and help families understand how a child with autism processes language.
What are your thoughts? Please share your experiences!
Kennedy Krieger Institute (2013) Speech Emerges in Children on the Autism Spectrum with Severe Language Delay or Greater Rate. Retrieved from www.kennedykrieger.org
Centers for Disease Control and Prevention (2014). Autism Spectrum Disorder (ASD). Retrieved from www.cdc.gov
When children are evaluated by a psychologist consequent to red flags, they probably do not imagine the potential for a diagnosis of autism. Some families may have never even heard of the diagnosis. As you can imagine, or have experienced firsthand, a diagnosis of autism can be devastating to a family. The future they had planned for their child now looks completely different. Many questions come to mind for that family, including the child's potential to acquire language and communicate effectively or their ability to take care of themselves one day. Some families experience an enormous amount of stress that can also strain relationships amongst family members.
As a provider working in the home you may experience some of the familial stress. Parents may even somewhat disagree with the psychological evaluation report, feeling as though their child's true abilities were not evident. My approach has been to emphasize the child's strengths. Also, as a therapist and evaluator I explain to families that during an evaluation their feedback is important as they know their child best. However, not all evaluators have the same approach. I think it is important to take the family's report into account considering autism is a serious diagnosis that most families are not prepared to handle. Sensitivity is definitely important, and taking family feedback into account is a good way to start.
I think that as a provider working in the home providing the family with as much information when they are ready can also be helpful. However, make sure you do not overwhelm the family with information, especially if they are not ready for it. Answer any of their questions and if you are unable to, provide them with an immediate response to let them know that you will investigate and get back to them. Emphasize the child's strengths and encourage the family to focus on the positives. Highlight the child's progress and how parental involvement is crucial.
Put yourself in the families' shoes and think about what would be helpful to you.
According to the U.S Centers for Disease Control and Prevention, one in 52 boys develop autism. On the other hand, one in 252 girls is affected. The Journal on Human Genetics discovered why more boys are more affected with autism compared to girls. Previously researchers theorized that mutations on the X chromosome were responsible. However, the current study found that genetic mutations responsible for ASD were more likely passed through their mothers DNA.
According to the findings, 60% of genetic mutations come from the mother and 40% from the father. In other words, the mothers are unaffected even though they have more genetic mutations. Researchers concluded that females are better able to overcome genetic mutations and despite more genetic mutations, less likely to develop neurodevelopmental disorders. Eichler, one of the lead researchers says males are more at risk for disease with less genetic mutations and for women it takes more despite the increased genetic mutations. Eichler is unsure why women are less affected by genetic mutations but concludes it may have to do with the fact that women have two X chromosomes.
Eichler indicates that there are 1500 genes on the X chromosome, 5% of which are important to brain development. If you are a male and have genetic mutations you are more vulnerable. Women, on the other hand have two X chromosomes so if one X chromosome has some defective mutations they have another X chromosome from the other parent that can compensate for defects. Eichler states that although females carry the majority of the genetic mutations, the males carry more of the "new" mutations. Although most genetic mutations come from the female, both parents contribute in different ways.
Eichler and his colleagues plan on continuing their research in order to determine why these genetic mutations put children at greater risk for developing ASD or other neurodevelopmental disorders.
Reference: Woerner, A (2014). Study Reveals Why Autism is More Common in Males. Fox News. Retrieved from www.foxnews.com