Autism Care Considerations
Finding care after an autism diagnosis
Autism is in the news a lot these days. Recent estimates put the prevalence of autism at 1 in every 150 American children, and almost 1 in 94 boys, according to the Autism Society of America. But even with so much news about autism, it can be confusing to know where to turn for help and how to find the support services you need to care for a child with autism. Fortunately, there are a wide variety of organizations that can help you learn more about autism and how to be - or find - the best special needs child care for your child.
First, let's look at the basics.
What is autism?
Autism is a neurological condition that affects brain function. You may hear the word "spectrum" a lot when people talk about autism, but what does it mean? Autism is also called Autism Spectrum Disorder (ASD), which is an umbrella term for five developmental disorders: Autistic Disorder, Asperger's Syndrome, Rett Syndrome, Childhood Disintegrative Disorder, and Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS). Every person on the spectrum is affected differently and to varying degrees. This means that everyone with autism has different challenges and unique care needs.
Before an autism diagnosis
Since her son was diagnosed with autism, celebrity Jenny McCarthy has helped to raise public awareness of the disorder through her books and through Generation Rescue, her autism advocacy organization.
It was McCarthy's persistence to find out exactly what was happening to her son that led them to an autism diagnosis. She has spoken publicly about the need for parents to follow their gut instincts when it comes to their children. If you suspect that something is amiss with your child, even if other people - including medical professionals - brush it off, it's your right and responsibility to seek answers and help until you get both.
While the exact causes of autism are not fully understood and there is no known cure, it is a treatable condition. Because of this, it's important to get help as early as possible. Early diagnosis and intervention can reduce the impact of developmental and social delays on kids with autism. If you suspect that your child may be on the spectrum, be diligent in getting a diagnosis, which can then open the door to help. (The organizations mentioned in this article may be able to connect you with healthcare providers in your area.)
How can you tell if your child should be tested for Autism Spectrum Disorder? The Autism Society of America advises parents to look for the following signs in their children.
- Lack of or delay in spoken language
- Repetitive use of language and/or motor mannerisms (e.g., hand-flapping, twirling objects)
- Little or no eye contact
- Lack of interest in peer relationships
- Lack of spontaneous or make-believe play
- Persistent fixation on parts of objects
As young children develop, they should hit certain milestones at certain times. For example, a child should be able to hold his head up when lying on his tummy by 3 months old, say "mama" and "dada" by 1 year old, and drink from a cup and use a spoon by 2 years old. The Easter Seals provides a list of expected developmental milestones in children. If your child misses a milestone, contact your doctor or healthcare provider immediately, as this can be an indication of autism or another problem.
After an autism diagnosis
If your child has been diagnosed with autism, seek treatment and support immediately. Again, early intervention is a key to limiting and reversing the negative effects of autism. Obviously, you'll need to work with your healthcare provider to arrange therapeutic interventions. Beyond that, the organization Autism Speaks provides a 100 Day Kit to assist families in getting the critical information during the first 100 days after an autism diagnosis. They also have an Autism Response Team with members who are trained to connect families with information, resources, and opportunities.
Parents of a child with autism often spend large amounts of time and energy caring for their child and working with him or her using specialized treatment methods. But like all parents, you need time to attend to life's other responsibilities and to take much-needed breaks. Therefore, it's essential to surround yourself with childcare options that work for you and your family.
Childcare comes in many forms. You may need a daycare program to care for your child while you're at work. Or you may be interested in camps that care for children after school or during the summer. Alternately, you might want to find an in-home caregiver or babysitter who can provide respite care for your child. When considering a childcare provider, review both their credentials and demeanor. You want someone who is qualified and respectful.
The Easter Seals has a handy list to help you know what questions to ask when researching child care facilities. They recommend looking at the following criteria:
- A - Accredited centers: Is the childcare center licensed? Does it operate according to the accreditation guidelines of the National Association for the Education of Young Children?
- B - Belief in each child's abilities: Children should receive individualized learning plans that address their specific cognitive, social, emotional, and physical needs.
- C - Committed teachers: Staff members should be warm and caring, and demonstrate respect for both children and parents. They should also be trained in CPR and first aid, and involved in continuing education programs.
A variety of intervention techniques are used to treat children with autism. When choosing someone to care for your child, you may want to look for a caregiver who is trained in the treatment that your child needs. At the very least, a caregiver should be willing to learn how to best care for your child and his or her specific needs. This means they should understand how to handle the following issues.
- Communication: Kids with autism may not communicate verbally, or may have limited verbal skills. Caregivers should take the time to learn your child's unique communication style and methods, whether that be verbal or non-verbal cues such as gestures or other behaviors.
- Physical safety: People with autism may be overly or insufficiently sensitive to pain. They may also have no concept of danger or fear. This means that caregivers must be vigilant in creating and maintaining a safe environment for a child with autism.
- Self-care issues: Caregivers should be taught how much a child can and cannot do for himself. Some kids with autism need more help with self-care activities than others. It's important that your caregiver knows what is normal for your child, so she can provide consistency when you're not there.
Where to find help
- On Care.com parents can search for qualified providers in their area or post a job with their specific needs. Care.com will run free background checks for members.
- Autism Speaks
- The Autism Society of America (ASA)provides Information & Referral (I&R) assistance to help identify local resources to meet your needs and share information so you can make informed choices. For assistance, call 1(800)3AUTISM or email firstname.lastname@example.org.
- ASA also runs Autism Source, a nationwide database of autism-related services and support.
Jennifer McGuiggan is a freelance writer and editor who lives in Pennsylvania.
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