"When Joey was first diagnosed with autism, I came across an article that said children with autism oftentimes grow up with very few friends. That hurt. I look to his school as a place where he can be with others. When he is out of school, I hope we will find new places where he can be with his peers."

About: Joey (Age 13)

Age Range: 6 to 13 years

Perspective: Parent Student interview of parent

County: Davidson


Joey is 13 years old and has been diagnosed with an autism spectrum disorder. According to his father, Wade, Joey’s best qualities are his good personality and his great sense of humor. People tend to enjoy interacting with Joey and he has many fulfilling relationships. In particular, Joey loves his niece Hannah and feels very protective of her. He and his sisters usually get along, displaying pretty typical sibling interactions. 

In his spare time, Joey enjoys watching movies, playing videogames, and any activity that involves trains. He also likes to read and is very strong academically in math.  Joey’s temperament is usually cooperative, yet he can be “a lot bit stubborn” and according to his father, sometimes does things only “if he wants to… If he wants to is a big thing with him.”

Joey’s stubbornness can be problematic, especially when he insists that he does not want to take his medication or when he gets upset when things don’t go his way.  Joey received a diagnosis of autism at 2 years of age.  Since Joey’s original diagnosis, he also has been deemed by professionals to have Obsessive Compulsive Disorder (OCD), Oppositional Defiant Disorder (ODD), an intellectual disability, bipolar disorder, and possibly a seizure disorder.

Education

Wade talked about the various aspects of Joey’s life that are successful as well as those in which they have particular challenges or needs.   Joey’s education, which started at the age of 3 in Japan through the military school system and has included some summers, has enabled Joey to make tremendous progress. Currently, Joey is in a special education classroom for the majority of the day, but he does take part in general education courses as well. Wade feels that Joey gets along with the teachers, aides, and the other students in his school environment.  However, the family has struggled with attendance issues lately as Joey sometimes refuses to go to school.

For Joey’s future education, Wade feels that Joey will need more daily living skills education because “Joey’s disabilities will probably prohibit him from living on his own.”  Wade also would like for Joey to have an aide with him more frequently, but understands this to be impossible as his public school does not have the staff for that kind of assistance. 

Wade finds it extremely important that Joey be offered social interaction at school. “What I look for from Joey’s education is mostly the social interaction,” he said. “It may sound strange, but I don’t care if he ever learns geometry or algebra or any of that. I don’t care particularly that he ever writes a term paper, but I want him to be able to interact with people. When Joey was first diagnosed with autism, I came across an article that said children with autism oftentimes grow up with very few friends.  That hurt. I look to his school as a place where he can be with others. When he is out of school, I hope we will find new places where he can be with his peers.”    

Health Care

The family has been fortunate to receive high-quality health care due to Wade’s retired military benefits.  Wade stated that the insurance pays a lot toward Joey’s medications, which otherwise would be very expensive for the family.  However, the one thing that Wade’s insurance does not cover is in-home behavioral therapy.  The family would like in-home behavioral or occupational therapy to improve some of Joey’s day-to-day functioning and help the family work with him.  There are some issues that Joey faces for which this type of specialist could be helpful. The family is unable to provide that assistance.

Employment and Housing

If Joey were employed in the future, he would require a supported environment for individuals with disabilities.  However, Wade did state that “You can’t really limit him either, because you never know.”  Along the same lines, in terms of housing, Joey will need to reside with his parents or in a supportive living situation for the rest of his life. Currently, Joey lives on a dead-end street with his family, which has been very helpful because there is not a lot of traffic.  Their house has a fenced yard, and Wade feels lucky that the family is very familiar with the area and has a strong network of neighbors and relatives in their immediate environment who are very supportive.  These factors are especially helpful if Joey wanders off of their property. 

Wade is unsure where Joey will live as he and Ashley continue to age, stating that “I don’t want him to be lost. I want him to be taken care of and to continue his life as seamlessly as possible. I don’t want to send my child away to a group home, but as he becomes an adult that may become the best long-term decision.”  Although Joey’s parents will have options, it seems this will be a difficult situation for them to come to terms with in the future.

Community and Current Challenges

Wade feels that his family has had mixed experiences in the community, depending on others’ knowledge and understanding of disabilities. Thus, how welcoming others are towards their family and son is largely situational. Wade, Ashley, and the rest of the family take Joey to parks, grocery stores, and the movies. However, movies can be difficult due to loud volume and the amount of people. Usually, their concern is about how comfortable Joey will be rather than how welcome they are in these places.

In the school environment, Joey is largely met with a welcoming attitude by peers. Wade stated that he feels “they like him for who he is.”

A major challenge for this family is that Joey requires someone to be with him at all times. This can be exceptionally difficult because both Wade and Ashley work, and thus the family has had to rely on babysitters or his sisters to help care for him at times.  This also leads to financial difficulties.  These difficulties are further exacerbated by Joey’s restricted diet, as trips to the supermarket can become quite expensive.  Overall, Wade and Ashley seem to be coping with these challenges in a way that enables them to provide the best possible environment for the growth and success of all three of their children.   

Another challenge is that people do not always recognize that Joey has a disability and so they are very judgmental when he has behavior issues in public. “Sometimes when people see Joey or look at him they think he should be a normal teenager,” said Wade. “If he’s having an episode and if he’s crying or screaming a bystander may not know what’s going on and may make assumptions that they shouldn’t make.”  This can be difficult for Joey and the family when they are out together in the community.

Future Concerns

As parents, Wade and Ashley plan to stay active in Joey’s life, even if he does move to a group home. As they age, they will continue to take care of him to the best of their abilities. In regards to Joey’s long-range future, Wade feels he will not go any further with his education after secondary school. They do not have any particular plans for him after he is unable to go to school.  While they do not want to limit him, they are trying to remain realistic about his options.

Knowledge and Awareness: Areas of Improvement

In general, Wade feels that people need more education about autism. He doesn’t think people understand that autism looks different in each individual. “I think a lot of it is that we are ignorant about things,” he said. “I didn’t know what autism was until my son’s diagnosis. And I think that most people don’t, unless they are affected by it or it’s part of their career path. Just like it’s the same with any other disease or disability—if it doesn’t affect you, you have enough things to worry about. And I think that, I think that there’s a lot left to be done.”

Updated on Thursday, November 3, 2011