This month, a comprehensive analysis was published highlighting the problems parents have finding help for their children with
autism. Jane Willis and Yara Evans from Queen Mary University of London
released the findings of their surveys from two years ago in a thirty-page
report entitled “Health and service provision for people with Autism Spectrum
Disorder: A survey of parents in the United Kingdom, 2014.” To read this full report, please click
here.] At the time they surveyed 264 parents and caregivers about their
experiences of caring for children with autism, more than 600,000 people with
autism were living in the United Kingdom. As I read the report, I noted that
parents in the United Kingdom face the same issues that autism parents
encounter in the United States.
Under the topic “Challenges faced and severity of issues,” more than 80% of the parents listed five specific challenges out of a list of 22, and the majority described all of these issues as “very significant.” These concerns included the following:
1. anxiety/fearfulness/avoidance behaviors
2. irritability (low mood, oppositional behaviors, tantrums, lack of flexibility)
3. sensory sensitivity (light/sound/touch/abnormal pain sensitivity)
4. agitation/stimming behaviors
5. sudden negative changes in behavior
Although behaviors appear to be the primary challenges parents face, the survey indicates that 87% of parents sought treatment from health care professionals for various issues and often found little or no help. The surveys revealed that parents consulted doctors for help with dietary and nutritional issues, gut issues, behavioral issues, sleep problems, toileting issues, seizures, and other issues without getting satisfactory assistance. Parents noted that many doctors lack knowledge about autism, and some did not take their concerns seriously, dismissing them as “just autism.”
With little support from medical professionals, parents of children with autism often seek other interventions, trying to help their children. This survey found that ninety percent of the parents had used dietary interventions or modifications for their children with autism. The top two diets used were the gluten-free diet (94% of those who used dietary modification) and the casein-free diet (90% of the parents who implemented dietary changes). Some parents use a combination of dietary modifications; we have used the gluten-free and casein-free diet with Alex for seventeen years. Of those parents who used dietary interventions, 92% reported some level of improvement (life-changing, significant, or slight) in their children with autism. Some of the benefits of dietary intervention that parents noted were improved communication skills, better eye contact and sociability, calmer and more compliant behaviors, improved sleep, greater focus, and fewer allergy and digestive issues.
In addition to dietary changes, 90% of the parents in this survey indicated that they had used nutritional supplements with their children. The four types of supplements most used included fish oils/essential fatty acids, vitamins, digestive and gut support, and minerals. Of the parents who used nutritional supports, 87% noted improvement at some level. These benefits are similar to those of the dietary interventions, such as better behavior, including being calmer and more focused, improved eye contact, and fewer digestive issues. Interestingly, parents who used nutritional supplements reported using more than one; in fact, nearly half used 6-10 supplements. Several of them also mentioned using dietary intervention along with nutritional supplements and felt that both had helped their children.
Besides dietary and nutritional interventions, parents also relied upon traditional medicine with 62% of parents reporting their children had been given prescription medications. The top three types of prescriptions listed are antibiotics, anti-fungals, and anti-virals. Considering that children with autism often have immune system issues, these medications would be necessary to help them deal with various types of infections. Parents generally found these prescriptions to be helpful, as 72% reported some level of improvement in their children after taking the medicine.
Despite the success of these medications, many parents of children with autism also seek alternative therapies to help their children: 72% of those surveyed indicated that they had tried alternative methods, and 87% of those parents reported some level of improvement. From a list of 33 different alternative therapies (several of which we have tried with Alex at one time or another), the top alternative therapies used included the following: homeopathy, ABA (Applied Behavior Analysis), HBOT (hyperbaric oxygen therapy), and CST (Cranial-Sacral Therapy). Those parents who used alternative therapies cited benefits, such as improvement in sensory issues and reduced anxiety.
Finally, the survey asked parents what changes they would like to see to assist them in helping their children with autism. Their top five recommendations for changes needed include the following:
1. Improved relationships between parents and professionals
2. An end to discrimination (treating children with autism differently than typical children and recognizing their medical needs) in service provision
3. A better understanding of autism
4. Better education and training for professional staff
5. More thorough investigations of the problems involved (such as recognizing that behaviors may have a medical cause)
After reading this comprehensive and insightful report, I was impressed with the information the researchers and the parents shared. Clearly, parents are not getting the support they need from the majority of medical professionals, who lack knowledge of autism and who may see it only as a psychological issue instead of a medical condition that can be treated to improve behaviors. With the increasing rate of autism, medical professionals need training to understand various issues concerning autism so that they may treat their patients appropriately. In the meantime, parents must educate themselves in alternative methods and therapies so that they can help their children get better. Our children deserve no less.
“An unreliable messenger stumbles into trouble, but a reliable messenger brings healing.” Proverbs 13:17
Under the topic “Challenges faced and severity of issues,” more than 80% of the parents listed five specific challenges out of a list of 22, and the majority described all of these issues as “very significant.” These concerns included the following:
1. anxiety/fearfulness/avoidance behaviors
2. irritability (low mood, oppositional behaviors, tantrums, lack of flexibility)
3. sensory sensitivity (light/sound/touch/abnormal pain sensitivity)
4. agitation/stimming behaviors
5. sudden negative changes in behavior
Although behaviors appear to be the primary challenges parents face, the survey indicates that 87% of parents sought treatment from health care professionals for various issues and often found little or no help. The surveys revealed that parents consulted doctors for help with dietary and nutritional issues, gut issues, behavioral issues, sleep problems, toileting issues, seizures, and other issues without getting satisfactory assistance. Parents noted that many doctors lack knowledge about autism, and some did not take their concerns seriously, dismissing them as “just autism.”
With little support from medical professionals, parents of children with autism often seek other interventions, trying to help their children. This survey found that ninety percent of the parents had used dietary interventions or modifications for their children with autism. The top two diets used were the gluten-free diet (94% of those who used dietary modification) and the casein-free diet (90% of the parents who implemented dietary changes). Some parents use a combination of dietary modifications; we have used the gluten-free and casein-free diet with Alex for seventeen years. Of those parents who used dietary interventions, 92% reported some level of improvement (life-changing, significant, or slight) in their children with autism. Some of the benefits of dietary intervention that parents noted were improved communication skills, better eye contact and sociability, calmer and more compliant behaviors, improved sleep, greater focus, and fewer allergy and digestive issues.
In addition to dietary changes, 90% of the parents in this survey indicated that they had used nutritional supplements with their children. The four types of supplements most used included fish oils/essential fatty acids, vitamins, digestive and gut support, and minerals. Of the parents who used nutritional supports, 87% noted improvement at some level. These benefits are similar to those of the dietary interventions, such as better behavior, including being calmer and more focused, improved eye contact, and fewer digestive issues. Interestingly, parents who used nutritional supplements reported using more than one; in fact, nearly half used 6-10 supplements. Several of them also mentioned using dietary intervention along with nutritional supplements and felt that both had helped their children.
Besides dietary and nutritional interventions, parents also relied upon traditional medicine with 62% of parents reporting their children had been given prescription medications. The top three types of prescriptions listed are antibiotics, anti-fungals, and anti-virals. Considering that children with autism often have immune system issues, these medications would be necessary to help them deal with various types of infections. Parents generally found these prescriptions to be helpful, as 72% reported some level of improvement in their children after taking the medicine.
Despite the success of these medications, many parents of children with autism also seek alternative therapies to help their children: 72% of those surveyed indicated that they had tried alternative methods, and 87% of those parents reported some level of improvement. From a list of 33 different alternative therapies (several of which we have tried with Alex at one time or another), the top alternative therapies used included the following: homeopathy, ABA (Applied Behavior Analysis), HBOT (hyperbaric oxygen therapy), and CST (Cranial-Sacral Therapy). Those parents who used alternative therapies cited benefits, such as improvement in sensory issues and reduced anxiety.
Finally, the survey asked parents what changes they would like to see to assist them in helping their children with autism. Their top five recommendations for changes needed include the following:
1. Improved relationships between parents and professionals
2. An end to discrimination (treating children with autism differently than typical children and recognizing their medical needs) in service provision
3. A better understanding of autism
4. Better education and training for professional staff
5. More thorough investigations of the problems involved (such as recognizing that behaviors may have a medical cause)
After reading this comprehensive and insightful report, I was impressed with the information the researchers and the parents shared. Clearly, parents are not getting the support they need from the majority of medical professionals, who lack knowledge of autism and who may see it only as a psychological issue instead of a medical condition that can be treated to improve behaviors. With the increasing rate of autism, medical professionals need training to understand various issues concerning autism so that they may treat their patients appropriately. In the meantime, parents must educate themselves in alternative methods and therapies so that they can help their children get better. Our children deserve no less.
“An unreliable messenger stumbles into trouble, but a reliable messenger brings healing.” Proverbs 13:17
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