In honor of Autism Awareness Month in April and World Autism Day on April 2, Autism Speaks is urging everyone to learn about the importance of early diagnosis of Autism Spectrum Disorder (ASD). The organization notes that, while ASD can be diagnosed as early as age 2, the average age of diagnosis in the United States is between 4 and 5. And some are getting their diagnoses earlier than others: “The CDC reports the overall prevalence of autism in the U.S. is 1 in 59 children, yet the reported prevalence among white children is 7% higher than African-American children and 22% higher than Hispanic children – pointing to potential missed or delayed diagnosis in those groups,” the organization notes in a release. Those who are diagnosed earlier have more access to critical, potentially life-changing care. Autism Speaks encourages everyone to find out more at ScreenforAutism.org.
Yet while early intervention is a critical and important step, having a diagnosis only takes parents so far. Parenting a child with ASD is a lifelong journey, and one that’s easily misunderstood by people who are not having the same experience. Here, parents of those with ASD tell us what they wish everyone knew.
It’s harmful to make assumptions from the outside.
Parents of kids with ASD, especially ones who are high-functioning, are often frustrated by comments from people who say their kids don’t “look” the part.
1. “I hate the phrase ‘He doesn’t look like there is anything wrong with him.’ Yes my son looks ‘normal’ on the outside, but his brain doesn’t process things like everyone else.” —Misty D.
2. “Because my son is verbal and able to make eye contact, I am often told by family and friends that he ‘doesn’t look autistic.’ The maker of such a comment usually proceeds to tell me that they don’t believe my son is truly autistic. It’s incredibly hurtful and insulting, and something commonly heard by parents of children with autism. If there’s one thing I want the world to know about my son and others like him, it’s that no two children with autism have the same symptoms or exhibit the same behaviors. That’s why it’s called a spectrum. I understand that we all have a desire to organize life into neat categories with hard and fast rules, but autism doesn’t work like that.” —Angie F.
There may be a lot more going on than you might not notice at first.
In addition to waving away the experience of kids who don’t exhibit the most expected symptoms, parents also report that their kids’ inner lives are also minimized by people who can’t always tell the thoughts that are happening on the inside.
3. “Just because they are nonverbal doesn’t mean they can’t hear and understand what is being said to them and around them.” —Donna R.
4. “I wish people understood that there is way more to these individuals than what you see. They are truly amazing with their own talents and a thinking process that is sometimes beyond what you can believe for anyone!” —Taleasa B.
5. “Embrace their unique minds. They are amazing.” —Sherri G.
No two people with ASD are exactly alike, and one person with ASD isn’t the same all the time, either.
Like all things parenting, just when you think you have things figured out, it becomes something else.
6. “It’s not one fits all. I have two autistic boys and they are completely different.” —Amanda F.
7. “One child’s autism changes throughout their life. My son needs different supports and a different approach as a teen, than he did in grade school.” —Serese C.
A little support can go a long way.
It can help immensely to find a parent who is going through the same things you are.
8. “The number-one thing I want people to know about autism is this — you must accept your child’s autism while you give him or her the most help you can. It’s very hard for people to hold two things that sound contradictory in their mind, but this is the best way I’ve found to approach autism parenting. Autism, mild or more severe, means they’ll face difficulty in many areas. Yet they are real, full, human beings with strengths and love inside them. Since autism comes in several subtypes, connect with parents whose kids are like yours. Find out what doctors, foods and therapies they use and carefully try new things step by step. They can and do get better with the right help, and will surprise you beyond your wildest dreams.” —Christina Adams
And yet, some understanding and accommodations can go even further.
Not only parents, but people who work with those in the autism community see how simple changes can have a huge impact.
9. “Having a child that is high-functioning is both a blessing and a curse. Because our children ‘look normal,’ there are no exceptions made for them. Society deems their to be a parenting or discipline problem. As these young people transition from childhood to adulthood, this becomes a real fear with regards to the police knowing how to identify, safely approach, and successfully interact with our loved ones. We need to support the training efforts to educate the world we all live in.” — Donna C.
10. “I have been working with families dealing with autism and individuals dealing with Alzheimer’s/dementia for the past 16 years. I’m a patrol sergeant, so I’m out on the road supervising my officers as my regular job. I’m currently working with Heroes 4 Autism to conduct training for first responders across the country. These children with autism will be adults with autism, many of whom are capable of driving, holding down jobs, and having families. While they may have challenges in areas of social skills and communication, our society as a whole needs a better understanding of those with autism. They are all amazing and brilliant. We just need to understand how to adapt to them sometimes. I originally started training with public safety because we are the officers who can easily misinterpret a ‘behavior’ and believe it to be a threat. But while officers need to understand the behaviors, everyone needs to understand the behaviors. The goal of Heroes 4 Autism is to raise awareness in the communities so that individuals on the spectrum can be allowed the opportunity to succeed.” —Tim S.
Source: Autism Speaks.