As autism rates rise, more and more parents face the possibility their child may have the disorder. Communication Specialist, Libbi Malmborg, has advice on where to turn if you suspect our child has autism.
Connect with your child:
Above all, pay attention to your individual child. Remember, Autism is a term that refers to a spectrum of behaviors and it is often human nature to imagine worst case scenario. A diagnosis is one part of a much larger puzzle. It alone does not define your child. I try to imagine what it would be like to be on the receiving end of this diagnosis, but I know I never truly can. However, what I do know, is that when I see families take a deep breath and work to connect or reconnect with each other they are able to lay important groundwork. Motivation is arguably the most powerful teaching tool. Work to discover what motivates your child. Watch closely and use what your child is interested in to engage, teach, and establish communication. Communication is the most powerful tool we have. It allows us to express our needs and wants, comment on a movie we just saw, share our stories and ideas, and most importantly establish positive relationships with the people closest to us.
Children may use speech to communicate, or they might use picture cards, manual signs, writing, or assistive technology (e.g., iPad). I think it is important to stay open to it all in order to allow your child to reach his or her full potential. Use many tools and find the ones that work.
I encourage parents to dive right in and invest a lot of time here and figure out what works for their family. The key is NOT that your children learn to talk per se, but that they learn about back-and-forth communication and all that is involved in that. To do this we need to make the shift in our own minds to believe that this is possible and then accept, model and affirm any of these forms of communication. What I see (and many other people see) is that once children have access to tools that allow them to participate (and affect) their environment, frustration and behaviors go down while positive interactions and a child’s level of engagement go up. This often creates more opportunity for the child to learn.
Acquire a little knowledge about Autism (but not too much):
Keep in mind that this diagnosis is based on an observation of specific behavioral characteristics across a variety of environments and situations and a comprehensive history of early development. So it can be subjective. In addition, when it comes to intervention we have seen different approaches work differently with different people. Surprise. So, when surfing the web, keep this in mind. Read and as soon as you start to feel overwhelmed, take a break. A few resources I like include:
It is often parents who first feel/see the signs of Autism and then a pediatrician helps identify and discuss some of the red flags. From here you may be referred on, or you may ask for a referral to an Autism Specialist (what this means is another whole topic J). There is no medical test for autism. So again, an accurate diagnosis is based on observation of specific behavioral characteristics across different settings and a detailed history of early development. A couple of decades ago the diagnosis of “Autism” was relatively rare. Now, as we watch the numbers increase and the diagnostic criteria change, experience, as much as training, can be critical in providing a meaningful diagnosis. I would say that the people who are best qualified to diagnose children with autism are those professionals who have had the most experience in doing so — and those professionals may have a wide range of titles and span a range of organizations. Usually you are looking at a developmental pediatrician, a pediatric neurologist, child psychologist, or child psychiatrist. The best case scenario is a multidisciplinary assessment to create the fullest picture. Teams are made up of one or more of the above listed and then typically an SLP, OT, PT, and social worker.
Connect with other parents:
A parent shared with me that she felt this was one of the best things you could do. As I thought about it after I realized how right she was. We need friends and perspective. It is often here that we feel more comfortable asking questions, sharing failures, and trying new ideas. Other parents can offer guidance and help find resources for your child or yourself. Everyone needs different support. Explore. Find something that feels helpful to you. Utah Parent Center has a great list of resources, social media (e.g. facebook groups), ask around, or start your own!
We all hear about the importance of “early intervention.” This is not a revolutionary concept. With most things the earlier we step in an attempt to alter the course of events, the better. Early intervention is important not because it will cure Autism and not because of a quickly closing window of opportunity, but because it helps lay important groundwork early on. Younger children have fewer ingrained habits so it’s relatively easy to stop negative behaviors before they become intractable. The general public more easily forgives young children for bad behavior. The same behavior seen from a child, who is ten or eleven, is intolerable. How well does such therapy work? That depends. Keep in mind that autism is a spectrum disorder and your child can fall at any point in the spectrum. There’s no doubt that children who undergo intensive intervention, be it behavioral or developmental, do better than children who don’t and there are very few good reasons to wait to provide therapy. HOWEVER it is necessary to take some time to assess the recommended interventions and consider what options are available and select ones that you feel will benefit your child the best without maxing out your resources (e.g. financial, emotional).
Find good therapists.
Some of the most common therapists parents seek include speech, behavioral, occupational, and physical. Once you decide which interventions will help your child the most, look at your options. Check with your school district and doctor. There are state programs for children age 0-3, and services provided through schools for older children. Many parents supplement these services with privately hired therapists. It is important to find therapists who is not only competent, but who listens to you and recognize your individual needs. Ask for referrals from your pediatrician, school, parent support groups, and friends. If your child is involved in early intervention and is gaining the skills needed to communicate with you and others and participate in his or her environment, then s/he is on the right track. Trust yourself. Watch your child. Know what your therapists are doing. You are the leader of this team
Libbi Malmborg, M.S. CCC-SLP
Childrens-slc.org / 801.810.9145
Libbi is a speech-language pathologist and founder of the Children’s
Synergistic Learning Collaborative.