Autism is making news more often of late, but that doesn't mean most people understand what it is or how to know if their child is affected. The diagnosis of autism is going up, and some people attribute that to better diagnostic procedures, survival of more extreme preemies who are at elevated risk, and perhaps more environmental factors.
Autism is a biologically based neurodisorder that typically appears by age 3 in a child. It is what is referred to as a spectrum disorder, meaning there is a wide range of symptoms and severity under the umbrella term of autism. For example, while you've likely seen some individuals with autism who were barely verbal, at the other end are folks like Daryl Hannah the actress or Dan Akroyd, comedian/actor/writer producer. Even Jerry Seinfeld has admitted he probably falls somewhere on the spectrum himself.
The odds of having autism are roughly 1 in 68; however, it is much more prevalent in boys than in girls, so for boys those odds are more like 1 in 42. Beyond gender, there isn't much autism discriminates against; it's found across nationalities, racial groups and socioeconomic levels. For parents, statistics can be comforting or disturbing, but what they really need is a map for what to look for and what to do.
15 Figure Out What This Means
Especially for newer, or first time parents, you may wonder and worry over everything. And you are continually told not to compare your child, so when you see very apparent differences you may initially shrug them off. But over time, the nagging questions build and you wonder, "Is there a problem with my child? Should I get help?" Any time a mom or dad has a strong sense of something being awry, I recommend getting advice from a professional. If you're wrong, great! No harm done. If you are right, the sooner you can get your child whatever help is needed, the better.
Become familiar with the classic symptoms of autism, such as social issues including not looking at people or connecting, sensory issues like being overly sensitive to tactile things, sounds or tastes, repetitive actions like rubbing things in their hands or rocking, or loss of developmental skills.
14 Have A Special CHAT
Usually a parent's first stop when concerned about autism will be with their pediatrician. One test often done by a professional to check for autism is a diagnostic tool called M-CHAT. M-CHAT stands for Modified Checklist for Autism in Toddlers. You can check out the sample questions online to get an idea of what the evaluation looks at. It is recommended to be used with toddlers ages 16 months up to 30 months to screen for autism or developmental delays.
The M-CHAT will not definitely diagnose a child with autism. It screens children and places the results within the a rank of low risk, moderate risk or high risk. If a child comes out at moderate or high risk, it means they should get a more in-depth evaluation performed. If a child has low risk results, but things still don't seem right, it's appropriate and wise to proceed with further testing in that case as well. A high risk result doesn't necessarily always mean autism.
13 Baby Gets Screened
A developmental screening is not unlike a usual check up for health concerns, except the health being evaluated is the child's mental and emotional development rather than physical alone. Both the Centers for Disease Control and Prevention (CDC) and the American Academy of Pediatrics (AAP) recommend screenings for all children at ages 9 months; 18 months; and 24 or 30 months. They also do more screenings if there are any concerns that crop up outside these tests.
A screening will be done at a clinician office, doctor's office or other setting, perhaps even in your home. It will involve questions, observation of the child and activities. It may even be a fun activity to your child, but the play will yield helpful insights into your child's development to a trained expert. If the results indicate a possible problem, you will be referred for further testing. It's important not to "wait and see," as the sooner a child gets special help, the better the results.
12 Many People Get Involved
A comprehensive diagnostic evaluation is a key part of getting a handle on a child's situation and whether an autism diagnosis will be made. The comprehensive evaluation will involve multiple professionals, from occupational and physical therapists, to child psychologists to speech therapists and even neurologists. If it sounds daunting, don't worry! Consider them your child's team, and that team will likely operate under one coach, often a psychologist, pediatrician or a developmental specialist.
Together they will piece together a developmental portrait of your child and from there design a plan for your child's future. Remember with all the professionals with degrees, lab coats and fancy offices, your voice is still a key one. No one knows your child the way you do, so your input is crucial. According to the CDC, research backs up parents' concern, with 70 to 80 percent of disability detection being instigated by their concern.
11 Baby Is Put On The Spectrum
Psychological testing for autism is beyond those inkblots tests we've all heard about, where you are asked what a glop of ink represents to you. These are tests like CARS, which stands for Childhood Autism Rating Scale; ADI-R which is the Autism Diagnosis Interview-Revised; ADOS-G which is the Autism Diagnostic Observation Schedule-Generic and the GARS-2 which is the Gilliam Autism Rating Scale Second Edition.
Sounds complicated and overwhelming, but actually some tests are quite brief, taking only 15 minutes or less. Also, the ADI-R is really an interview with the parents that takes less than an hour on average to complete. All the acronyms sound intimidating, but most of these tests are straightforward, the results are simple to understand, especially when explained by an experienced person in the field.
10 Getting Baby As Close To 'Normal' As Possible
Occupational therapy sounds like job training, but it isn't! OT involves helping people of all ages and ability with daily life tasks, whether they have physical, medical, emotional or behavioral issues. My man got OT help right after his major back surgery, to help him learn to do some tasks a certain way until he healed up. My older son got OT to help him due to delays from severe prematurity, and my younger daughter has some mild sensory issues and ADHD, and has benefited greatly from weekly OT visits.
When an OT professional is part of the evaluation process for a child with suspected autism, the testing and evaluation will build into a plan for goals to meet with the child through therapy. A great deal of what an OT does for a child with autism will be related to sensory issues and helping them not get overwhelmed by things such as sounds, certain movements or tactile experiences.
9 Teaching Baby To Communicate
Other integral parts of an autism evaluation include a hearing test and speech evaluation. Hearing tests make certain that the child has no hearing deficits interfering with development. A child with impaired hearing cannot learn language and communication without special help, and will feel disconnected from her world. A speech evaluation will look at not just the obvious things, such as diction and speech defects, but also how the child's receptive language is. What words does a child know and recognize?
All kids have higher receptive language skills than expressive. That means they know far more words than they use in speech. A speech therapist is an important helper in developing a plan for an autistic child's success in both school and life. Parents will likely be very involved in speech therapy for their child, incorporating different skills into daily moments to help build a child's vocabulary and speech skills.
8 Getting Pediatrician's Input
Your child's pediatrician will be a center link in getting your child evaluated for autism spectrum disorder. Likely this is a parent's first stop when concerns begin to surface about their child's development. Pediatricians are often the team leader until and unless a developmental specialist is brought onto the team.
Pediatricians will look at any other physical causes for any of a child's developmental issues, as a number of physical ailments can hamper a child's normal growing and maturing. Talking to your pediatrician about your child's problems may be more comfortable for you than talking to all these new faces flittering about. You may be more open with the child's regular doctor because you've likely been working with him or her for some time, and you feel this physician knows you and your child, as well as the family, and can break down the clinical info to you more readily.
7 Tracking Baby's Sleep Patterns
It may not be something you anticipated, but often a sleep clinic will be a part of your child's autism evaluation. A 2015 study published in the Journal of Pediatric Neuroscience found, like a number of previous studies, a strong link to sleep disorders and autism. The study found that 53 percent of children with ASD and between the ages of 2 and 5 years had sleep problems. Those problems included trouble falling asleep, waking frequently and fighting against going to sleep.
Should your child fall into this category, you will be given tips on establishing a sound sleep routine, creating a positive sleep environment and whether your child needs medication or supplements such as melatonin to help the child sleep at night. Lack of quality sleep impairs everyone's attention levels, levels of functioning and emotional stability.
6 Taking A Look At Baby's Brain
A visit to a neurologist is a main part of a proper autism evaluation. A neuro exam may consist of a physical exam, and tests such as an EEG or electroencephalography where electrodes are painlessly attached to the scalp to monitor the brain's electrical activity. This can show brain activity disruptions such as epilepsy, which is seen in 7 to 14 percent of autistic children, but it can also reveal brain maturity and signs of encephalopathy (or brain dysfunction.)
Some children may be given brain imaging tests such as MRIs or CT scans to check the brain for damage to brain tissues. Some of these tests can seem scary, to both child and parent, but ask plenty of questions to alleviate fears. Parents should be given plenty of info about the tests and how they will be conducted. It's essential to find a pediatric neurologist familiar with autism testing for best results and experiences.
5 Still No Clear Answers?
Sometimes an evaluation, no matter how involved and comprehensive, doesn't yield conclusive answers. Or perhaps you were given a basic eval, and no answers. Don't stop pushing for a diagnosis! A child's quality of life is at stake so persistence on a parent's part is key. If you are unsatisfied with your pediatrician being at the helm of the evaluation, don't hesitate to express your concern.
If it goes unheeded, then proceed to find a new physician. While you want to act as soon as you have legitimate concerns, there are times it takes more than one round of testing to get a conclusive diagnosis of autism. Not everyone is as experienced or knowledgeable about autism testing, and you can't expect all experts to be equal.
4 Teachers' Input Matters
School assessments are another tool for getting a child diagnosed with autism spectrum disorder. Sometimes parents are reluctant to see a child's struggles for what they are, or feel threatened by the suggestion. This is where a nursery school or preschool teacher can be helpful in pointing out areas of concern and helping connect parent's to resources that can be helpful.
Once a diagnosis is made, regular school evaluations will be performed to check goals and progress made. Teachers are always crucial in knowing how a child is doing in educational settings. Teachers may see your child in different environments, interacting in different ways than you as a parent can. With their unique perspective, they can offer different insights into how your child is developing and getting along.
3 Make A Plan
Once an evaluation is complete and an autism diagnosis is made, an early intervention plan will be made using the input of all the professionals who were involved in the initial evaluations. Goals will be set with the various specialties such as speech and language development, occupational and physical therapy, and pediatricians. Your child may have a developmental specialist as the head of the team delivering services to your child and family. Some programs such as Easter Seals or United Cerebral Palsy will have in-home therapy visits, while others have services delivered at a school or clinic setting.
It depends on the child's age, your community services available and the level of care required. Quarterly or biannual reevaluations are typical. During these you and your provider(s) will go over the previous goals and see how much progress has been made. Then new goals will be set or old ones adjusted as needed.
2 Schooling Mom And Dad
Another aspect of diagnosing a child with autism is educating the family on autism and how the relatives are affected from this day forward. Parents will need to learn about what kinds of issues are common to autism families and the best coping strategies. Most plans will include a parental or home aspect in the goal-setting.
Parents will be given "homework" at times to work on with the child. Learning about all the various issues connected to having autism spectrum disorder is a big job. It's a varied and evolving area of study, and kids can fall along a very wide range of symptoms. Autism research is growing and new ideas and strategies are continually being developed. It's important to become an expert on your child and his or her needs, strengths and struggles because you are their number one advocate.
1 Finding Support
Parents of any special needs child have a high stress load. It's especially hard when your child has what can be called an invisible disability. Parents with a child in a wheelchair need not explain their situation, but a child who has autism will not have an obvious sign of a disorder or problem. The stress of dealing with the public as well as your child's needs can be overwhelming. This is when a support group, whether online or an in-person group can be a lifesaver.
These families are dealing with the same issues and are struggling with the same emotions and can offer a shoulder to cry on, a sounding board or just an understanding ear. Having a support group can make all the difference for families of autistic children. Some have reported that stress levels of parents of autistic children resembles that of combat veterans. You cannot be a good caretaker for your child if you don't take proper care of yourself.
Sources: AutismSpeaks.org, NationalAutismAssociation.org, CDC.gov, AutismScienceFoundation.org, M-chat.org, PsychCentral.com, ncbi.nlm.nih.giv, FGCU.edu