Autism was first described by Leo Kanner in the 1940s. It was believed in the 1960s, that “refrigerator” parents who were cold / unloving were the cause for autism. This of course has been proved to be wrong. It has also been proved conclusively that vaccines, especially the MMR vaccine and the mercury preservation that is present in it, do not contribute to autism. With a prevalence of 1 in 66, and more common in boys, it is unclear why autism in children is on the rise. Even more important, we see that autism is being more
recognized in adults as well. ASD in adulthood is estimated at a prevalence of 1.6%.
According to the DSM 5, autism spectrum disorders (ASD) are described as deficits in a few different areas. The person will have deficits with social emotional reciprocity, non-verbal communications and developing, maintaining and understanding relationships. Those with a diagnosis of autism will also display restricted repetitive patterns of behavior, interests or activity such as: stereotyped motor movements, inflexible adherence to routine and insisting on sameness. They will also have restricted or fixed interests to an abnormal degree and may be hyper or hypo sensitive to sensory stimuli. For an adult to be diagnosed with autism later in life,
these issues must have been present in his or her early developmental period and their deficits will have caused impairment in social, occupational or other areas of functioning. In addition, their difficulties should not be explained on a basis of intellectual disability or global developmental delay.
According to the DSM 5, autism can come with or without the following criteria: intellectual disability, language impairment, catatonia, and neurodevelopmental, mental or behavioral disorders and with or without a known cause, such as genetic, medical or environmental reasons. Those with autism will require different levels of support and this will differ from each individual ranging from minimal support to very substantial support. In
the recent years, we are identifying many genes which are considered to be the causative factor in the development of autism.
A new entity in the DSM5 is “social (pragmatic) communication disorder”. This may be confused with an individual with autism. People with a social communication disorder would have persistent difficulties in the use of verbal and non-verbal communications such as using communication for social purposes, inability to change communication to match context or the need of the listener, following rules for conversation and storytelling and difficulty reading between the lines. The individual will have the above deficits, but their other functioning will be up to par with their peers. Therefore, the difficulties
are not explained on a basis of an autism spectrum disorder, intellectual disability or global developmental delay. Since the concept of adults with autism has been introduced, those with social communication disorder have not been well characterized due to the overlap in deficits. A lot of patients who are labelled as having Asperger syndrome would probably fall in this category.
There are many different reasons why an adult may not have been diagnosed in their childhood. Reasons for a delay in diagnosis is often seen with those with a normal IQ, milder forms of ASD such as Asperger Syndrome and copying and camouflaging behaviors, thus being able to blend in with their peers. ASD should be suspected in an adult when he or she has
difficulty with obtaining or sustaining their education, difficulty initiating or sustaining social relationships, or he/she has unexplained neurodevelopmental disorders or mental health issues.
There are many different disorders that may coexist with ASD. Those include psychiatric disorders such as anxiety, depression, OCD, psychosis, catatonia, aggression to self and others, and substance abuse. These adults with ASD have difficulty maintaining relationships with friends, a spouse, their employer and co-workers. This in turn leads to social isolation, guilt, hopelessness and depression.
ASD may also coexist with some neurodevelopmental disorders such as ADHD, LD and tics. In addition, children and adults with ASD are at
increased risk for co-existing medical disorders such as epilepsy and sleep disorders. The seizures are often nocturnal, while they often have insomnia at night and less need for sleep overall.
Children and adults with ASD often have GI issues as well. The spectrum of GI involvement includes abdominal pain, vomiting, reflux, chronic diarrhea, constipation, and immunological dysfunction specifically secretin to explain GI mechanisms causing ASD. There is also a relationship between ASD and anorexia nervosa and heightened details to different types of foods.
There has been a challenge with health care transition in those with ASD from youth to adulthood. This transition of care should be discussed by the Pediatrician with the family
between 13-15 years of age, and transition to adult care providers must be completed by age 18. Issues around education, vocational training, employment, social support, housing and healthcare need to be addressed. Even though adults with ASD still need the many services and therapies they received until adulthood, research shows unfortunately that there is a high rate of discontinuation of these services as they become adults. There needs to be a system set in place to assist in the continuity and seamless flow of services for the young adult with ASD. Four basic questions that the pediatrician of the youth with special health care needs should be asking the caregiver are: - Shifting to an adult provider
- The health
care needs of adults with ASD
- Health Insurance (kids are under the parental health insurance only until 26 years of age
- The youth's need/ability to take on appropriate responsibility for his/her health care needs
To address the issues pertaining to transition of healthcare in ASD to adulthood, there have been many different movements. The transition from youth to adulthood should include vocational training, employment, social support, community participation, housing, healthcare and insurance, financial considerations and medical management. It is marked by a multidisciplinary approach to ensure a way to enable youth to be taken care of by an adult facility. The transition is
done with full participation of both the pediatric and adult providers and with total family involvement. Five different suggestions to help these individuals and their families’ transition seamlessly would be: - Provide all written medical information to the caregiver so they may pass it on to the adult provider.
- Give the caregiver a list of adult providers and community resources.
- Coordinate care and communication between the pediatric provider and the adult provider
- Help make transition specific appointments.
- Have a check list of what is required for the transition to keep track of what has been done and what still needs attention.,?li>
Most importantly, research has shown the adult providers are less knowledgeable and experienced in treating these adults with ASD.
Less than 10% may outgrow ASD in adulthood and only 22% hold down a job. In addition, 87% of individuals with ASD are on benefits and only 7 % live independently. It is important for the caregiver to initiate guardianship issues before the patient turns 18. Caregivers of adults with ASD should also look into various financial supports that may be available such as Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI).
For adults, a program for education and enrichment of relational skills will help further their abilities with a mobile crew model. This
consists of a small group of adults with ASD and a coach to help develop a small business to sell a specific service.
Even with all the above interventions, statistics show that only a third of adults with ASD are employed. In addition, 50% of adults with ASD and near normal IQ were overeducated for their job which indicates underachievement. Adults with ASD need customized employment, onsite training, and positive behavior support and retention techniques so they may obtain the best job for their abilities.
Social support for those with ASD is also lacking and needs improvement. It has been shown that women with ASD do not do as well as compared to men with ASD. The adults with ASD need inclusion in community-based programs
and counseling regarding substance abuse, aggression towards self and others, sexual abuse of self and towards others to further assist with socialization. Those with ASD can also be victims of or perpetrators of crime and therefore there is a need to train law enforcement in this phenomenon. Prognosis is better when there is a parent involved during the transition period.
Due to an adult with ASD being limited in their abilities, their housing opportunities are different than typical adults. The adults with ASD with an almost normal IQ may be able to live independently, however, most do not live on their own. Others may live independently but with some supports while others may live in a supervised apartment, group home, and
residential facility or may end up living with their parents. Another issue for adults with ASD is their healthcare and insurance needs. There are fewer services available for adults with ASD unlike in childhood where the schools provided the services they needed. In addition, parental insurance stops after age 26 and then the adult with ASD will need to apply for a new insurance plan to cover medical expenses. This issue is expounded because the total healthcare needs for adults with ASD is seven time more than for those with other disabilities. The cost per adult with ASD in his or her lifetime for healthcare is about $3 million, which means a higher out of pocket expenditure for families. Children and
adults with ASD have services and programs available to them such as Home and Community Based Services (HCBS) waiver and could tap into Medicaid money for various support services. However, adults with ASD may not be aware and therefore their healthcare expenses are overwhelming to most caregivers.
Adults with ASD are limited in their ability to care for themselves and therefore the HIPPA privacy laws can cause challenges for caregivers. Parents or guardians should discuss guardianship before the child turns 18 because once he or she turns 18, the caregivers lose their right to communicate with their child’s healthcare provider. By declaring guardianship for someone that cannot properly care for themselves, it ensures proper
management of medical, psychiatric and behavioral issues, GI and sleep issues, epilepsy and pain.
Because of the issues outlines above, it is imperative for newer innovative programs which are multidisciplinary in nature to be created. There needs to be more government funding so that the many needs of the individual with ASD is met without financial obstacles. Additional training to the adult provider of comprehensive management of adults with ASD is crucial to their management as well as their outcomes.
In conclusion, we know that the prevalence of ASD is increasing exponentially. The transition of healthcare should be initiated by age 13-15 and completed by age 18 so there are no obstacles in the way of their medical care.
Parents and /or caregivers need to be included in all decisions and assist in the lengthy process. Comprehensive care models need to be developed for adults with ASD including social, vocational, educational, housing, financial issues and medical needs. Most crucial is the adequate training of the adult providers so that the caregivers and individuals with ASD are comfortable and confident that they are getting the best that healthcare has to offer. References: - Jeste, S. S., & Tuchman, R. (2015). Autism Spectrum Disorder and Epilepsy: Two Sides of the Same Coin? Journal of Child Neurology, 30(14), 1963–1971. https://doi.org/10.1177/0883073815601501
- IvánSánchez
FernándezMDab1 TobiasLoddenkemperMDa1Jurriaan M.PetersMDaSanjeev V.KothareMDc(2016) Electrical Status Epilepticus in Sleep: Clinical Presentation and Pathophysiologyhttps://doi.org/10.1016/j.pediatrneurol.2012.06.016
- Reynolds, A. M., Malow, B. A., (2011) Sleep and Autism spectrum disorders. Pediatr Clin North Am.2011 Jun;58(3):685-98. doi: 10.1016/j.pcl.2011.03.009
- Samsam M, Ahangari R, Naser SA. Pathophysiology of autism spectrum disorders: revisiting gastrointestinal involvement and immune imbalance. World J Gastroenterol. 2014;20(29):9942-51.Tebartz van Elst, L., Pick, M., Biscaldi, M. et al. Eur Arch Psychiatry Clin Neurosci (2013) 263(Suppl 2): 189. https://doi.org/10.1007/s00406-013-0459-3
- Friedman N. D.,
Warfeld M. E., Parish S. L., (2013) Transition to adulthood for individuals with autism spectrum disorder: current issues and future perspectives.
- Kuhlthau, K. A., Warfield, M. E., Hurson, J., Delahaye, J., & Crossman, M. K. (2015). Pediatric provider’s perspectives on the transition to adult health care for youth with autism spectrum disorder: Current strategies and promising new directions. Autism, 19(3), 262–271. https://doi.org/10.1177/1362361313518125
- Cheak-Zamora, N. C., & Teti, M. (2015). “You think it’s hard now … It gets much harder for our children”: Youth with autism and their caregiver’s perspectives of health care transition services. Autism, 19(8), 992–1001.
https://doi.org/10.1177/1362361314558279
- L. Matson, Johnny & Cervantes, Paige & Peters, William. (2016). Autism spectrum disorders: management over the lifespan. Expert Review of Neurotherapeutics. 16. 10.1080/14737175.2016.1203255.
- https://www.autismspeaks.org/ Very good source of reference.
Sanjeev V. Kothare, MD, FAAN, FAASM
Director, Division of Pediatric Neurology
Co-Director, Professor of Pediatrics & Neurology
Zucker School of Medicine at Hofstra/Northwell
Sleep Program for Children (Neurology)
Ahuva Edelstein, CPNP
Certified Pediatric Nurse
Practitioner
Pediatric Neurology
Felicia Minerva, LCSW-R
Licensed Clinical Social Worker
Pediatric Neurology
Steven and Alexandra Cohen Children's Medical Center of New York
2001 Marcus Ave. Suite W 290
Lake Success, NY 11042
(T) 516-465-5255
(F) 718-347-2240
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