Q. My son is fourteen years old and we’ve had a challenging time with him throughout his childhood, but his transformation since has been remarkable. At three, his preschool teacher suggested that we get him checked for autism. He wasn’t looking her in the eyes when he spoke, was impulsive, and couldn’t sit still, and he had motor and speech delays. We brought him to a neurologist, and it was too soon to diagnose him for ASD, so she suggested that he get help in the areas where he needed it the most without the formal diagnosis.
We tirelessly spent our evenings driving all over the DC area and exhausted our finances to get him the help he needed, including play therapy, occupational therapy, and speech therapy, and taking adaptive Tae Kwon Do and adaptive swimming. The therapies lasted for 8 years and by the time he was 11, he improved greatly in all areas. He graduated from his various therapies and began maturing and excelling in school. In junior high school, he worked very hard academically and moved from smaller classes to team taught ones. He still had some learning difficulties, but they were far less severe than they used to be, and he made honor roll three times. When he was finishing up his last year of middle school, he was 6’1 and recruited to play basketball for a local league. He was social and had lots of friends, and girls liked him. He spoke a lot about his own interests, but in many ways, he outgrew whatever it was he had, whether it was autism or not.
I remember the day his fourth-grade teacher told me “there is no hope for him.” If they were to tell me ten years ago or even five years ago that my son would be “okay,” I would have never believed them.
My friend’s son, on the other hand, had a lot of the same symptoms as my son, but didn’t get the help he needed early on because he was diagnosed when he was in junior high. He is socially withdrawn and still needs a lot of assistance. Is it too late for him? Is it too late for someone like Amy Schumer’s husband, who found out that he has autism as an adult? Maybe my son was a fluke or never had autism at all. But, I’m wondering, to your knowledge, can someone outgrow autism spectrum disorder?
A. Thank you for sharing the remarkable story about your son. I hope he continues to excel and to make you proud!
Currently, 1 out of every 59 children in the US is affected by autism spectrum disorder (ASD). As you are likely aware, ASD behaviors can include challenges with social skills and repetitive behaviors, to difficulty with speech and nonverbal communication. For years many parents assumed that when their child was diagnosed with ASD that they would remain on the spectrum for their entire lives. However, a new study is showing that it may be possible for those who were diagnosed with ASD to outgrow the diagnosis. So, if your son did in fact have ASD, your experience was not a fluke at all!
A study published in the Journal of Child Neurology found that some children who were initially diagnosed with ASD by the age of 3 no longer displayed the symptoms 4-6 years later.
The study, discussed in this month’s Science Daily, looked at 569 children who were diagnosed with ASD. Most of the children in the study were diagnosed between 2-4 years of age and were followed up on four years later. The majority of the children studied received early intervention services similar to your son’s, which included a mix of speech and occupational therapies, special instruction, and applied behavioral analysis therapy.
At follow-up, 38 children (7% of the original 569 patients) no longer met the diagnostic criteria for ASD. Almost 50% of these children still had external behavioral issues while 24% had internal behavioral problems. Of those 38 children, 5% had a “significant mental health diagnosis.” Three of the 38 children were found to have no other problems.
Only three of the 38 children (8%) recovered completely from ASD and had no other problems. Follow-up cognitive testing (available in 33 of the 38 participants) showed that none of the children was intellectually disabled.
Although 7% may not seem like a large amount, the fact that 38 children no longer met diagnostic criteria for ASD is quite positive!
Scientists are using the results of the study to explore further whether autism was initially over-diagnosed, whether some children are better able to respond to intervention, and which specific interventions contributed to the positive outcomes. The sense of the researchers is that those children who evolve in a positive direction generally “have the mildest symptoms to begin with.” Another finding from the study is that although “some kids do amazingly well, most of them have persistent difficulties requiring ongoing monitoring and therapeutic support.”
When Your Child Doesn’t “Outgrow Autism”
What if your child is among the majority of those with ASD who never “outgrow” it? Once a child becomes an adult, a forced transition, called “aging out,” pushes children with ASD to live as adults with ASD. And it’s not just parents with more severely disabled children who are worried. Parents whose children are “high-functioning,” including those with an Asperger’s diagnosis, have reason to be concerned that their kids are not going to magically stop needing support after they reach a certain chronological age.
Planning starts at 14
Parents often begin panicking when their kids hit 14 and transition planning starts coming up. For example, this is the first year in Fairfax County that your child can attend his or her IEP meeting and weigh-in on decisions. The focus of the meeting shifts to more specific planning and goal-setting for your child’s transition into young adulthood. Goals might include things like post-secondary education, vocational training, and independent living.
Once your adult child with special needs is out on his or her own, there are several options for him or her. Please read today’s Critter Corner for more details on this subject.
Being Diagnosed as an Adult
Although autism is predominantly diagnosed in childhood, increasing numbers of adults are finding out that they too have autism. Due to more adults being diagnosed with ASD, Autism Speaks now offers a guide that will walk you through next steps and provide critical information about your rights as an adult with ASD. There is also a list of helpful resources in the guide for you to find more information as you set out on this new journey.
Consider a Special Needs Trust
If you or a loved one is disabled, it is wise to consider creating a special needs trust. A special needs trust is an essential tool to protect a disabled individual’s financial future. Also known as “a supplemental needs trust,” this type of trust preserves eligibility for federal and state benefits by keeping assets out of the disabled person’s name. Special Needs Trusts fall generally into two main categories:
- Third-Party SNTs that one person creates and funds for the benefit of someone else.
- First-Party SNTs that are created for the person with special needs using that person’s own money.
Both “first party” and “third party” Special Needs Trusts are created for the benefit of an individual with a disability, but have some differences. Read our article on this subject for a detailed description of these and other types of special needs trusts.
Let us Assist You with Special Needs Planning
When it comes to special needs planning, we can guide you through this process. Please contact us to make an appointment for an initial consultation:
Special Needs Attorney Fairfax: 703-691-1888
Fredericksburg Special Needs Attorney: 540-479-1435
Rockville Special Needs Attorney: 301-519-8041
DC Special Needs Attorney: 202-587-2797
About Renee Eder
