My son was recently diagnosed with a form of autism called Pervasive Developmental Disorder/Not-Otherwise-Specified. He is six years old. We had been trying to find the right diagnosis for years so we would know how to help him better. Well, we have the diagnosis and I’m still not sure what all needs to be done for his treatment. Can you offer suggestions?”
It’s easy to be overwhelmed when you get a diagnosis. It may seem like an answer to a prayer at the time. But after it sinks in, parents tend to ask “What now?” That’s understandable.
And with this particular diagnosis, it is probably more so. There is a lot out there on the internet which can be helpful and discouraging. How do you know you can trust the information provided? How do you know if it will work for YOUR child? You don’t. A lot is trial and error. If anyone tells you that they have a one-size-fits-all fix for your son, they are liars. Autism is a spectrum disorder and the causes are not yet known so there is no standardized form of treatment that will work for every child.
However, there have been methods that are time-tested and scientifically proven to help SOME children with autism. They are listed in the 2007 clinical report by the American Academy of Pediatrics called “Management of Children with Autism Spectrum Disorders.” Granted, the information is two years old but the methods still stand. The only updates have been more studies proving the efficacy of the methods suggested.
The report was meant as a guide for pediatricians to help them navigate the patient’s care in all areas of life. However, a parent can use this information. First, chronic management is necessary since Autism Spectrum Disorders (ASDs) are not curable and medication has not been proven to correct the core deficits of this disorder and therefore are not the primary treatment. However, medication may be used to help manage the resulting behaviors or co-occurring disorders such as ADHD.
The interventions go beyond academic learning. These include socialization, adaptive skills, communication, and improvement of interfering behaviors, and generalizations of skill across multiple environments. In order for your child to learn academics, these other areas need to be addressed as well.
The methods could be behavior analysis, developmental or structural based. There are common goals among them. All agree that early intervention is key after a diagnosis is seriously considered (don’t just wait until the diagnosis has been confirmed). The intervention should be at least 25 hours a week, 12 months a year, and be systematically planned.
Educational services should be implemented with a low student to teacher ratio and in small group settings, until child shows ability to succeed in regular sized classroom. The intervention plan should include parent training as necessary. Some parents have training in this field already and some do not. The intervention should also provide opportunities of interacting with neurotypical peers in order to reach the goals of the intervention.
Ongoing measurements and documentation of progress are necessary and adjustments to the plan should be made when necessary based on the documentation. Intervention methods should incorporate high degree of structure. Predictable routines, visual-based activities and schedule, clear physical boundaries of rooms could be important when implementing strategies. Whatever the method, strategies to generalize and maintain functional use of the learned skills should be used.
Another common goal among the methods is to include using assessment-based curricula in the following areas:
• Functional, spontaneous communication
• Social skills, i.e. joint attention, imitation, reciprocal interaction, initiation, and self-management
• Functional adaptive skills (increase responsibility and independence)
• Decrease maladaptive, disruptive behaviors using strategies that are supported by empirical evidence
• Cognitive skills (such as symbolic play, perspective taking)
• Traditional readiness skills and academic skills as developmentally appropriate
The following discusses several examples of methods that can be used to achieve the above-mentioned goals:
Applied Behavior Analysis:
This type of has been used and its effectiveness has been documented through single-subject methodology and in controlled studies. It’s outcomes have been significantly better than those in control groups at achieving substantial, sustained gains in “IQ, language, academic performance, and adaptive behaviors as well as some measures of social behaviors.”
TEACCH (Treatment and Education of Autistic and Related Communication Handicapped Children)is a model based on structured teaching. It features:
• Organized physical environment
• Predictable sequence of activities
• Visual schedules
• Flexible routines
• Structured work/activity systems
• Visually structured activities
• Dual emphasis on improving skills with accommodations
These models are based on developmental theory. The Denver model has been studied and showed improvements; however, it has lacked controlled studies. The Denver model features improving key deficits in imitation, emotion sharing, theory of mind, and social perception by using play, interpersonal relationship building and activities to promote symbolic thoughts and teach the power of communication.
These models include Developmental Individual-Difference, Relationship-based (DIR) and Relationships-Development Intervention (RDI).
DIR focuses on:
- Floor-time play
- Therapies to improve auditory processing, language, motor planning, and sequencing, sensory and visual spatial processing problems
- Effectiveness studies are flawed and lacking according to the AAP.
RDI focuses on activities that illicit interactive behavior with the goal of engaging a child to show the value of interpersonal activity and motivation to learn more. The studies done so far are anecdotal. There were improvements more than can be explained by maturity alone but there is no idea how much concurrent therapies helped.
Speech and Language Therapy:
In addition to educational intervention, speech and language therapy should be implemented. You can get therapy through public school or a prescription from your doctor, if your health insurance covers it. If your insurance is Medicare/Medicaid, it is covered but amounts of service time allowed vary by state for Medicaid-paid services.
AAP states in the clinical report that most children with ASDs can develop useful speech and that regardless of chronological age, lack of typical prerequisite skills (i.e. lack of babbling as an infant), failure to benefit from previous interventions and lack of discrepancy between IQ and language does not mean a child should not receive speech and language therapy.
It should also be noted that low-intensity and pull-out services are not as effective when done alone. There needs to be collaboration between teachers, support personnel, families, and child’s peers for functional communication opportunities. In other words, it does not do the child as much good to spend 20 minutes a day with professional and then not continue the work in other environments.
Further, the use of other forms of communication can help the process. For example, sign language is often taught to children with ASDs and this seems to help the child understand why we use verbal sounds to communicate.
There is a lot of anecdotal evidence that proves children who use sign language first eventually use verbal speech to communicate. A personal opinion is that once a parent understands the child’s way of communicating, the parent can then help the child learn verbal communication. For example, for the child who uses echolalia to communicate needs, the parent can fill the need while providing a verbal script to the child. If child says “100% juice for 100% kids?” when he wants juice (repeating phrase from TV commercials), the parent gives the child juice, saying “I want juice.” Eventually, the child replaces the phrase from television with the parent-provided script. The next step is novel, spontaneous speech.
Social Skills Instruction:
Joint attention training may be helpful for young, preverbal children. Families should be taught how to engage child in social activities. Some parents, from lack of training, often do not include a non-verbal child during family discussions because the child does not participate back. However, a parent should provide opportunities for that child to engage by asking the child questions or making statements to the child. If the child responds in any way, over-exaggerated facial expressions can be used with positive, verbal praise.
• Social Skills instruction should target:
• Responding to social overtures
• Initiating social contact
• Minimizing stereotyped preservative behavior while using flexible and varied repertoire of responses.
• Self-managing of skills
Occupational and Sensory Integration Therapies:
Occupational therapy (OT) is used for self-care skills such as dressing, brushing teeth, brushing hair and academic skills such as handwriting and use of scissors. OT can be used to help with play skills and provide prevocational training. There were not any efficacy studies available at this time.
Sensory Integration therapy (SIT) can be used to improve deficits in neurologic processing and integration. SIT can be used to calm a child, reinforce proper behavior and help with transitions. Available studies on the effectiveness of SIT have methodological limitations.
Programs for older children and adolescents:
Because early intervention has received much of research’s attention, there is not much science for this age group. However, ABA-based science has been shown effective across all age groups. IEPs given to younger children should remain in place as children do not “outgrow” autism.
“Educational programs should be individualized to address the specific impairments and needed supports while capitalizing on the child’s assets rather than being based on a particular diagnostic label.” (Source: AAP clinical report, 2007).
By age 14, transition planning should be initiated and by age 16 a transition plan should be in place. This transition plan should shift the focus to vocational skills and fostering abilities.
The concerns of overall health are the same as children without ASDs; however, special attention should be paid to indentifying and treating common related disorders. Some suggestions for doctor visits include:
• Allowing ample time of talk before touching patient
• Allow child to play with instruments
• Keep instructions simple
• Use visual cues when indicated
• Slow pace
• Exaggerate social cues
• Have family and staff available for help
• More time is required (double the amount given for non-ASD children) for doctor visits
There is some degree of higher mortality rate due to seizures and suicide. Other common health issues include:
• Gastrointestinal problems
• Sleep disturbance
• Evaluation of challenging behavior as they may have physical causes
• Medications to control behavior or physical symptoms should only be used after all else is considered
• Studies have shown 92% of parents participate in complementary and alternative medicine (CAM) but effectiveness of these CAM should and can be studied.
Family should be given education and training to help assist the child within the home. Parents should be treated as co-therapists since that is, effectively, what they are. You cannot expect a parent to know how to foster verbal speech if that parent has no training in the area. Therapists working with the child should also work with the parent.
While the AAP clinical report did not discuss this area, the information is based on an investigation done December 7, 2009 by the Chicago Tribune.
IVIG treatment is where antibodies is taken from donors and then infused into the patient through an IV. It takes many hours to complete and it is only FDA approved for Pediatric HIV, and some bone marrow transplants. The theory about how it helps those with an ASD is that IVIG is supposed to help regulate the immune system. However, the Kennedy Krieger Institute does not support this and IVIG treatment has been labeled by pediatric neurologists as irresponsible. There are high risks of side effects, such as headaches/anaphylactic shock, meningitis along with the small risk of contracting a disease through the donor. There is no science that proves the claim that IVIG helps autism via the immune system.
Hyperbaric oxygen therapy:
The only approved use of this therapy by the FDA is for decompression sickness. The thought is that hyperbaric oxygen therapy will help those with autism reduce inflammation. The side effect risk is ear pain and oxygen toxicity. There is no science to support this treatment claim at this time and many scientists believe it may cause long-term damage.
I know many of my readers will be surprised at the inclusion of this therapy on the non-recommended list. However the risks are too great to ignore and there is no scientific evidence that this is an effective therapy for autism. This is an FDA approved therapy for severe lead poisoning. The theory is that autism is caused by lead-poisoning and this can help rid the body of heavy metals. With the risk of nausea, vomiting, body pains, neutropenia (basically a low amount of granular white blood cells that are highly destructive of microorganisms) and even death, it would not be a good idea for parents to use this without further scientific evidence of effectiveness and safety.
This treatment is only FDA approved for urea cycle disorders. This therapy is thought to fix detoxification pathways for those with an ASD. However, there are no scientific studies into the use for autism. The possible side effects of this are rectal bleeding, vomiting, peptic ulcer disease, irregular heartbeat and depression. Again, without empirical scientific evidence, it would be unwise to use this therapy for children as a means of treatment for autism.
As with anything, please consult your child’s physician before implementing any treatment.