Diagnosing  Autism Spectrum Disorder

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Links and Info Updated in 2023!

What is the best advice for medical providers? How can we improve the time at the doctor’s office for those with autism?

Telemedicine -- connecting health care providers and patients via computer or smart phone for diagnosis and treatment -- has been making it easier, and more cost-effective, to "see" the doctor. Using a camera-enabled computer or smart phone, patients with common health concerns can get some diagnoses without leaving their homes. Emergency room doctors and nurses are able to communicate with their peers in larger trauma centers via computer, as well. Specific to Autism is the challenging situation to find experts in remote geographical areas including here in Binghamton, NY. And this was a problem 25 years ago and cannot be blamed on the pandemic, though that just worsened it. A University of Iowa study, published in the journal Pediatrics, shows that parents with children on the autism spectrum are able to have a specialist address challenging behavior in these children by interacting over the computer, too, and at less than half of the cost of receiving similar care in person. "A lot of kids who are on the autism spectrum have significant problems with behavior," says Scott Lindgren, PhD, professor of pediatrics in the Stead Family Department of Pediatrics at University of Iowa Carver College of Medicine, and lead author of the study. "These kids may have trouble following directions, or have problems when there are changes in their schedule or routine. They also don't always have good enough communication skills to be able to explain to someone why they're getting upset or having a meltdown." Already we are seeing providers of telemedicine set up businesses with one being The Autism Tele-medicine Company. They state that they founded the company because they "bring not only the medical expertise, but also the three dimensional experience with the disorder that comes from living with it at home. This combination renders us vastly more empathetic and sensitive to what you may experience all the way from the crushing time of autism diagnosis through your child's adulthood." However, again, they are a private health provider and it is still a provider's choice as to whether or not they will accept public or private health insurance. Another new Telehealth company is www.asyouare.com There you can receive an evaluation. It's the answer during this time of 2 and 3 year waiting lists and travelling hours with your child. If you want to check out a larger center, there are major research centers in the country, particularly those under the National Institute of Health's Research on Autism Centers of Excellence not only provide this service but continue to research its effectiveness. These centers are located at UCSF, Boston University, Emory, UCLA, UNC at Chapel Hill, University of Iowa, and Yale among others.

Unfortunately for families and parents of children like those described above, there is no break from this constant demand. Children and adults with the diagnosis of autism are unique in many ways: The child with Autism does not connect well with his or her environment. Autism manifests itself most strikingly as impairments in communication and in the formation of social relationships. Children with Autism are often nonverbal, or when they are verbal they usually do not use the skill to actively communicate with other people in their environment. Many children with this disability have a strong need for a structured, routine environment; change creates feelings of fear and/or anxiety. Some children even exhibit serious behavioral changes including, at times, self-injury. Another behavior common to Autism is a tendency to wander away. Parents often refer to their children as “Houdini,” stating they are able to escape from even the most secured environment and the family usually has multiple locks on every door and window in the home. When this happens, the child may be in a life-threatening situation, especially if they are already out of the physical sight of their caregiver. Children with Autism often don’t respond to their names consistently, if they respond at all. They rarely understand the many dangers in their environment; an approaching car or a stranger with ill intentions. Many parents report their greatest fears center on their child being missing or if they look away only for a minute; they will find their child gone or darting out into the path of an oncoming car. With the use of a Registered, Trained Service Animal, many families and adults living with autism are able to take their eyes off their child for a brief moment to attend to their other children, answer the phone or even use the bathroom alone! These parents are quite adept at creating opportunities for their children which in turn makes it so their children can remain living with them. To remain as an intact family with a developmentally disabled child is rare. Not only do these parents find a way for their child to remain in their care, saving the state millions of dollars over a lifetime, but found a way for their child to stay living at home and do so safely. The safety is the key. The dog requires specialized training costing thousands of dollars, but without this training, the dog will simply be nothing more than a pet; another living being for the parents to care for. A service dog’s sole purpose for a child with autism is to respond to the child in many ways, such as: The dog will interrupt the behavior of self-harming; social Isolation is lessened as the focus shifts to the dog, opens doors for socialization; enhances verbal skills by using commands for the dog; the dog will crawl onto the child's lap and calm the child; and lastly in LOCATING A LOST CHILD – The dog will have the ability to find child by various methods, i.e., tracking, area search, building search. This is NOT ordinary obedience training that an owner brings the dog to the local vet, vocational school or even use of a video can do. This is training that only a specialized behaviorist can do and the particular behaviorist chosen for this task requires travel on the part of the parents. The parents and anyone who interacts with the dog will need to undertake this type of training in order to ensure the dog’s purpose and role is carried at all times. This may include but not limited to: The parents, the child’s staff, the siblings, and of course the child himself will also participate at some point. The bottom line is safety. This canine companion plays an important role along with the use of locks, fences, 911 and tracking devices to keep a child with autism SAFE and HOME. Having this dog is much more than a pet. It is a large sacrifice on the part of the family. The family has already put all the locks, bolts, video monitoring, GPS devices and alarms on their home that they can. The potential for liability far outweighs the cost of the service dog. Lastly, I now have a Service Dog, for my son. As a dog lover and wanting to provide my son with all the opportunities available to him, a service dog was just the next logical step for our family. One company, located in NY State's Hudson Valley is BluePath Service Dogs and is highly recommended. If you are not in NY State or want a few other choices, try these: www.autismservicedogsofamerica.com ; www.autismassistancedog.com ; www.4pawsforability.org ,

There are hundreds of apps available that could take hours on a limited schedule to choose the right one - Here's the Top 5.

Starting in April of 2016, the Social Services law will be amended in NY State to allow for parents of their adult child to be paid under the Consumer Directed Personal Assistance Program (CDPAP) , as long as the parent is not also named as the designated representative. This is a program where the consumer, i.e., the individual with the disability, can hire anyone he or she chooses. The CDPAP is a statewide Medicaid program that provides an alternative way of receiving home care services, where the consumer has more control over who provides their care and how it is provided. Rather than assigning a home care vendor or agency that controls selection, training, and scheduling of aides, the "consumer" or the family member, friend or guardian directing his/her care performs all these functions usually done by a vendor. The change was signed into law by Governor Cuomo on November 20, 2015 which amends the Social Services Law §365-f, subd. 3, L. 2015 Ch. 511, enacting Senate bill S05712-A proposed by Senator Simcha Felder. State regulations now prohibit only the spouse or parent from being hired as the CDPAP aide, but allow a son or daughter or any other family member, provided the family member does "...not reside with the consumer or ... who resides with the consumer because the amount of care the consumer requires makes such relative's presence necessary...." The aide need not be 'certified' as training is done by the consumer and family. However, CDPAP aides may perform skilled care that otherwise only be performed when a person cannot self-administer, such as suctioning tracheotomies, insulin injections, administration of oxygen and medications. What's all this mean for families? Many parents of developmentally disabled children are stressed to their maximum abilities when they have a child who requires 24/7 care. If there are two parents in the home, they often work opposite hours of one another in order to be sure their disabled child is cared for in their best interest. They do this in place of a group home, as they want their child home with them for as long as possible. After all most are happiest living with their parents. While the parents are very willing to do this for their children many find that by the time their child has reached the age of 21 and they are no longer in a school setting, they are the full-time caregivers for their now adult children. Where there were financial strains prior to the child becoming adult, they now find themselves bankrupt and on assistance programs. At planning meetings, advocates often hear from parents the need to work to support their family, yet they are staying home unpaid in place of a professional caregiver. There just aren't enough caregivers to go around. The solution for several states since 2011 has been to pay the parents; however, the Home and Community Based Medicaid Waiver program in NY has allowed for everyone in the family except the parents to be paid. Parents will need to call their local Consumer Director Personal Assistance Program (CDPAP) agency for their county. A good place to start is the Department of Health who contracts with the fiscal as the aide is not an employee of a home care agency, but is instead an independent contractor, who is paid wages and benefits by a "fiscal intermediary," an entity that contracts with either the county or a managed care plan to provide services authorized by that county or managed care plan. It is the fiscal intermediary that pays the aide wages and benefits. "This is wonderful news for families all across New York State. There is no one who understands the complex needs and challenges of a child with a disability better than a parent," said Assemblyman Joe Morelle (D-Irondequoit), who co-sponsored the bill. Copyright - Advocates For Autism, LLC and Sally J Colletti