From the emotional stress of the initial diagnosis to the ongoing financial stress of expensive treatments and therapies, autism affects families in many ways. Coping with these stressors can create stronger marriages and families, but it takes a great deal of work and an excellent support system. How Autism Affects Families From the moment they begin to suspect that their child isn’t developing in a neuro-typical way, families of children with autism spectrum disorders begin to face challenges that set them apart from other family groups. This disorder can be emotionally devastating for parents, especially just before and after the child is diagnosed. Additionally, there’s the stress of navigating complicated therapy schedules, following through on treatment at home, juggling family commitments with job responsibilities, and many other issues. While these difficulties may feel insurmountable, most families learn to cope and adjust with time.
Emotional Impact Autism is an emotional roller coaster ride that begins before diagnosis and continues throughout life. According to a study published in the journal Pediatrics, mothers of children on the autism spectrum frequently rated their mental health status as “poor” or “fair.” They had a much higher stress level than the general population. In addition to the higher stress level, many parents of children with autism experience the following emotions: Feelings of being overwhelmed Relief at having a name for the challenges their child faces Anger at their spouse, the doctors, or themselves Resentment of the child and guilt for that resentment Despair at the incurable nature of the disorder Guilt that something they did may have caused their child’s challenges Frustration that the parenting experience they have is not what they envisioned Feelings of social isolation Embarrassment at child’s behavior in public Physical Impact Autism also has an indirect impact on the physical health of family members. Anxiety, depression, and exhaustion all take a toll on the physical health of families with children on the autism spectrum. Stress can lead to lowered immunity, and sleep deprivation may result in difficulty concentrating, memory impairment, and other health complications. Financial Impact The financial impact on families of autistic children is enormous. Most private health insurance plans do not cover all expenses related to therapy and treatment for autistic children, and the co-pays for office visits and medications often results in huge financial debt. In addition to therapy and medical expenses, there are added financial burdens like specialized educational toys, equipment like weighted blankets and vests, and much more. According to a study in Pediatrics, having a child with autism resulted in an average of a 14% loss in total family income. It is often extremely difficult for both parents to continue working full-time, which means a reduction in household income to go along with the increased expenses. Since many parents need a full-time job in order to provide health insurance, loss of full-time employment can have a dramatic and negative impact on the family’s finances. Impact on Marriages One of the biggest ways that autism impacts families is by placing additional stress on the parents’ marriage. According to a study published in the Journal of Family Psychology, parents of children with autism were 9.7% more likely to get divorced than their peers. There are several ways that autism stresses the marriage: Often, parents accept the child’s diagnosis in different ways and at different rates, leading to conflict. Inconsistent schedules and numerous commitments make it difficult for parents to spend time together. It can be challenging to find child care for children with autism, which also makes it hard for parents to go out as a couple. Financial stresses can cause additional conflict between parents. Impact on Siblings Autism also affects neuro-typical siblings. These children face many of the same pressures as the rest of the family, and they may not have the full support of parents who are overwhelmed with the needs of their child with autism. Sibling rivalry can become more intense in a family with a mixture of typically developing siblings and children with autism. If the ASD child’s need for extra time and attention becomes a permanent issue, as often happens with autism, siblings can feel left out, and resentment can build. However, many families are able to sort out these challenges as long as they can control other stress factors. A study in the Journal of Autism and Developmental Disorders found that the biggest predictor of sibling emotional adjustment was the presence or absence of other risk factors like low socio-economic status. If these factors were controlled, the experience of being a sibling to a child with autism actually enhanced the emotional and psychosocial health of the sibling. Reducing the Negative Impact There are several ways that families can reduce the negative impact of autism: Therapy or counseling: Psychotherapy is a valuable tool for dealing with the emotional impact of autism, and family counseling is helpful for dealing with marital and communication problems. In cases of depression or anxiety, medication is an effective short-term remedy. To find a therapist, contact your family doctor for a recommendation. Support groups: For many parents and family members, autism support groups can be life saving. Contact with other parents of autistic children eases isolation, improves mood, and increases acceptance and understanding of the disorder. Often, just knowing that others are going through a similar experience can bring much needed relief and help parents cope with the physical and emotional challenges of raising an autistic child. Your school district will be able to recommend a local support group. Accepting help: Parents and family members should seek help and support from every source possible. There is nothing wrong with relying on extended family to babysit, or with accepting donations to help pay for therapy and medical expenses. Parents must remember to take a break and spend some time caring for their own needs. An extra nap, a trip to the salon, or an afternoon at the bookstore can recharge the mind and body and alleviate a considerable amount of accumulated stress. Taking care of yourself, helps make you a better caregiver. Embracing the Positive Impact Although there are a variety of challenges associated with parenting a child with autism, the disorder can also have many positive affects on your family. Through successfully facing challenges and seeing progress in their child, parents can become more confident and emotionally secure. Facing these challenges as a team can strengthen the marriage as well. The key to keeping things positive is taking care of yourself as well as your special needs child.
There are many things you can do to help a child with Autism Spectrum Disorder (ASD) overcome their challenges. These parenting tips, treatments, and services can help.
A parent’s guide to autism treatment and support
If you’ve recently learned that your child has or might have autism spectrum disorder, you’re probably wondering and worrying about what comes next. No parent is ever prepared to hear that a child is anything other than happy and healthy, and an ASD diagnosis can be particularly frightening. You may be unsure about how to best help your child, or confused by conflicting treatment advice. Or you may have been told that ASD is an incurable, lifelong condition, leaving you concerned that nothing you do will make a difference.
While it is true that ASD is not something a person simply “grows out of,” there are many treatments that can help children acquire new skills and overcome a wide variety of developmental challenges. From free government services to in-home behavioral therapy and school-based programs, assistance is available to meet your child’s special needs and help them learn, grow, and thrive in life.
When you’re looking after a child with ASD, it’s also important to take care of yourself. Being emotionally strong allows you to be the best parent you can be to your child in need. These parenting tips can help by making life with an autistic child easier.
Don’t wait for a diagnosis
As the parent of a child with ASD or related developmental delays, the best thing you can do is to start treatment right away. Seek help as soon as you suspect something’s wrong. Don’t wait to see if your child will catch up later or outgrow the problem. Don’t even wait for an official diagnosis. The earlier children with autism spectrum disorder get help, the greater their chance of treatment success. Early intervention is the most effective way to speed up your child’s development and reduce the symptoms of autism over the lifespan
When your child has autism
Learn about autism. The more you know about autism spectrum disorder, the better equipped you’ll be to make informed decisions for your child. Educate yourself about the treatment options, ask questions, and participate in all treatment decisions.
Become an expert on your child. Figure out what triggers your kid’s challenging or disruptive behaviors and what elicits a positive response. What does your child find stressful or frightening? Calming? Uncomfortable? Enjoyable? If you understand what affects your child, you’ll be better at troubleshooting problems and preventing or modifying situations that cause difficulties.
Accept your child, quirks and all. Rather than focusing on how your autistic child is different from other children and what he or she is “missing,” practice acceptance. Enjoy your kid’s special quirks, celebrate small successes, and stop comparing your child to others. Feeling unconditionally loved and accepted will help your child more than anything else.
Don’t give up. It’s impossible to predict the course of autism spectrum disorder. Don’t jump to conclusions about what life is going to be like for your child. Like everyone else, people with autism have an entire lifetime to grow and develop their abilities.
Helping your child with autism thrive tip 1: Provide structure and safety
Learning all you can about autism and getting involved in treatment will go a long way toward helping your child. Additionally, the following tips will make daily home life easier for both you and your child with ASD:
Be consistent. Children with ASD have a hard time applying what they’ve learned in one setting (such as the therapist’s office or school) to others, including the home. For example, your child may use sign language at school to communicate, but never think to do so at home. Creating consistency in your child’s environment is the best way to reinforce learning. Find out what your child’s therapists are doing and continue their techniques at home. Explore the possibility of having therapy take place in more than one place in order to encourage your child to transfer what he or she has learned from one environment to another. It’s also important to be consistent in the way you interact with your child and deal with challenging behaviors.
Stick to a schedule. Children with ASD tend to do best when they have a highly-structured schedule or routine. Again, this goes back to the consistency they both need and crave. Set up a schedule for your child, with regular times for meals, therapy, school, and bedtime. Try to keep disruptions to this routine to a minimum. If there is an unavoidable schedule change, prepare your child for it in advance.
Reward good behavior. Positive reinforcement can go a long way with children with ASD, so make an effort to “catch them doing something good.” Praise them when they act appropriately or learn a new skill, being very specific about what behavior they’re being praised for. Also look for other ways to reward them for good behavior, such as giving them a sticker or letting them play with a favorite toy.
Create a home safety zone. Carve out a private space in your home where your child can relax, feel secure, and be safe. This will involve organizing and setting boundaries in ways your child can understand. Visual cues can be helpful (colored tape marking areas that are off limits, labeling items in the house with pictures). You may also need to safety proof the house, particularly if your child is prone to tantrums or other self-injurious behaviors.
Tip 2: Find nonverbal ways to connect
Connecting with a child with ASD can be challenging, but you don’t need to talk—or even touch—in order to communicate and bond. You communicate by the way you look at your child, by the tone of your voice, your body language – and possibly the way you touch your child. Your child is also communicating with you, even if he or she never speaks. You just need to learn the language.
Look for nonverbal cues. If you are observant and aware, you can learn to pick up on the nonverbal cues that children with ASD use to communicate. Pay attention to the kinds of sounds they make, their facial expressions, and the gestures they use when they’re tired, hungry, or want something.
Figure out the motivation behind the tantrum. It’s only natural to feel upset when you are misunderstood or ignored, and it’s no different for children with ASD. When children with ASD act out, it’s often because you’re not picking up on their nonverbal cues. Throwing a tantrum is their way of communicating their frustration and getting your attention.
Make time for fun. A child coping with ASD is still a child. For both children with ASD and their parents, there needs to be more to life than therapy. Schedule playtime when your child is most alert and awake. Figure out ways to have fun together by thinking about the things that make your child smile, laugh, and come out of her/his shell. Your child is likely to enjoy these activities most if they don’t seem therapeutic or educational. There are tremendous benefits that result from your enjoyment of your child’s company and from your child’s enjoyment of spending unpressured time with you. Play is an essential part of learning for all children and shouldn’t feel like work.
Pay attention to your child’s sensory sensitivities. Many children with ASD are hypersensitive to light, sound, touch, taste, and smell. Some children with autism are “under-sensitive” to sensory stimuli. Figure out what sights, sounds, smells, movements, and tactile sensations trigger your kid’s “bad” or disruptive behaviors and what elicits a positive response. What does your child find stressful? Calming? Uncomfortable? Enjoyable? If you understand what affects your child, you’ll be better at troubleshooting problems, preventing situations that cause difficulties, and creating successful experiences.
Tip 3: Create a personalized autism treatment plan
With so many different treatments available, it can be tough to figure out which approach is right for your child. Making things more complicated, you may hear different or even conflicting recommendations from parents, teachers, and doctors.
When putting together a treatment plan for your child, keep in mind that there is no single treatment that works for everyone. Each person on the autism spectrum is unique, with different strengths and weaknesses.
Your child’s treatment should be tailored according to their individual needs. You know your child best, so it’s up to you to make sure those needs are being met. You can do that by asking yourself the following questions:
What are my child’s strengths – and their weaknesses?
What behaviors are causing the most problems? What important skills is my child lacking?
How does my child learn best – through seeing, listening, or doing?
What does my child enjoy – and how can those activities be used in treatment and to bolster learning?
Finally, keep in mind that no matter what treatment plan is chosen, your involvement is vital to success. You can help your child get the most out of treatment by working hand-in-hand with the treatment team and following through with the therapy at home. (This is why your well-being is essential!)
A good treatment plan will:
Build on your child’s interests.
Offer a predictable schedule.
Teach tasks as a series of simple steps.
Actively engage your child’s attention in highly structured activities.
Provide regular reinforcement of behavior.
Involve the parents.
Choosing autism treatments
There are many different options and approaches to ASD treatment, including behavior therapy, speech-language therapy, physical therapy, occupational therapy, and nutritional therapy.
While you don’t have to limit your child to just one treatment at a time, it’s unlikely you’ll be able to address everything at once. Instead, start by focusing on your child’s most severe symptoms and pressing needs.
Caring for a child with ASD can demand a lot of energy and time. There may be days when you feel overwhelmed, stressed, or discouraged. Parenting isn’t ever easy, and raising a child with special needs is even more challenging. In order to be the best parent you can be, it’s essential that you take care of yourself.
Don’t try to do everything on your own. You don’t have to! There are many places that families of children with ASD can turn to for advice, a helping hand, advocacy, and support:
ADS support groups – Joining an ASD support group is a great way to meet other families dealing with the same challenges you are. Parents can share information, get advice, and lean on each other for emotional support. Just being around others in the same boat and sharing their experience can go a long way toward reducing the isolation many parents feel after receiving a child’s diagnosis.
Respite care – Every parent needs a break now and again. And for parents coping with the added stress of ASD, this is especially true. In respite care, another caregiver takes over temporarily, giving you a break for a few hours, days, or even weeks.
Individual, marital, or family counseling – If stress, anxiety, or depression is getting to you, you may want to see a therapist of your own. Therapy is a safe place where you can talk honestly about everything you’re feeling—the good, the bad, and the ugly. Marriage or family therapy can also help you work out problems that the challenges of life with an autistic child are causing in your spousal relationship or with other family members.
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Free U.S. government services for children with autism
Under the U.S. federal law known as the Individuals with Disabilities Education Act (IDEA), children with disabilities—including those with ASD—are eligible for a range of free or low-cost services. Under this provision, children in need and their families may receive medical evaluations, psychological services, speech therapy, physical therapy, parent counseling and training, assisted technology devices, and other specialized services.
Children under the age of 10 do not need an autism diagnosis to receive free services under IDEA. If they are experiencing a developmental delay (including delays in communication or social development), they are automatically eligible for early intervention and special education services.
Early intervention services (birth through age two)
Infants and toddlers through the age of two receive assistance through the Early Intervention program. In order to qualify, your child must first undergo a free evaluation. If the assessment reveals a developmental problem, you will work with early intervention treatment providers to develop an Individualized Family Service Plan (IFSP). An IFSP describes your child’s needs and the specific services he or she will receive.
For autism, an IFSP would include a variety of behavior, physical, speech, and play therapies. It would focus on preparing kids with ASD for the eventual transition to school. Early intervention services are typically conducted in the home or at a child care center.
To locate local early intervention services for your child, ask your pediatrician for a referral or use the resources listed in the Resources section at the end of the article.
Special education services (age three and older)
Children over the age of three receive assistance through school-based programs. As with early intervention, special education services are tailored to your child’s individual needs. Children with ASD are often placed with other developmentally delayed kids in small groups where they can receive more individual attention and specialized instruction. However, depending on their abilities, they may also spend at least part of the school day in a regular classroom. The goal is to place kids in the “least restrictive environment” possible where they are still able to learn.
If you’d like to pursue special education services, your local school system will first need to evaluate your child. Based on this assessment, an Individualized Education Plan (IEP) will be drafted. An IEP outlines the educational goals for your child for the school year. Additionally, it describes the special services or supports the school will provide your child in order to meet those goals.
Know your child’s rights
As the parent of a child with ASD, you have a legal right to:
Be involved in developing your child’s IEP from start to finish
Disagree with the school system’s recommendations
Seek an outside evaluation for your child
Invite anyone you want—from a relative to your child’s doctor—to be on the IEP team
Request an IEP meeting at any time if you feel your child’s needs are not being met
Free or low-cost legal representation if you can’t come to an agreement with the school
Autism, or Autistic Spectrum Disorder (ASD), refers to a range of developmental conditions that affect how an individual perceives the world and interacts with others.
To find out more about identifying autism in preschool kids, click here.
Take a look at our pick of 7 fun, sensory activities, and don’t be afraid to tailor them to your child’s own interests, likes and dislikes.
1. Make a Sensory Bottle:
Fill an old plastic bottle with a mix of water, glitter, and a few drops of food coloring to create an eye-catching toy for your kid. Drop-in a few buttons or marbles and then seal the lid tightly using a hot glue gun. This activity is a really simple way to help your kid learn to engage and stay focused.
A step-by-step guide to making your own sensory bottle can be found here.
2. Try Coin Rubbing:
A timeless classic that even adults can get involved with. Simply gather up a few different coins, place a sheet of paper over the top and use mixed crayons to ‘rub’ a colorful pattern into the paper. Children with Autism will love making patterns while developing their hand-eye coordination skills.
Bonus Tip: Why not ask friends or family who travel abroad to borrow any coins they have collected and talk to your kid about these places.
3. Thread Edible Jewelry:
Use candy laces and licorice to create pretty necklaces and bracelets. Encourage your kid to hone their motor skills by threading on cereal with holes in the middle and other colorful candies. Once they’ve finished, knot the ends, and your kid will be delighted with their fashionable (and tasty) creation.
4. Create a Sensory Collage:
Children with Autism can often find distinct textures and sensations overwhelming. Ease your kid into more messy activities by making a tactile collage with a small selection of new materials such as aluminum foil, glitter, and magazine clippings. Over time your preschooler may enjoy being introduced to a wider range of textures.
5. Incredible Ice Painting:
This fun and easy science experiment are sure to stimulate your child’s curious mind. Pour different colored acrylic paints into an ice tray and place wooden craft sticks in each compartment. Once frozen solid, remove the paints and let your kid create beautiful designs by swirling the melting over the paper.
Fill a selection of small containers (old, painted, jam jars work best) with a mix of fragrant ingredients such as lavender, coffee, or soap. Place a seal over the top using a piece of fabric and a rubber band and then ask your child to identify the different smells. Children with Autism love to learn about their senses and the roles they play in exploring their environment.
7. Play the Magical Matching Game:
Matching games are a fun way to enhance your child’s learning. Try placing 10-15 different printed words on one side of a table and have your preschooler match these words to their corresponding pictures on the other side of the table. You can easily alter this activity to reflect what your child is learning about at school by using foods, animals, or numbers.
As a parent, you’ve probably spent a lot of time thinking about your child’s future. Even more so if they have an autism spectrum disorder or ASD diagnosis.
Apart from the medical care and therapies that you may line up to help your son or daughter, there are simple, everyday things that make a difference.
Focus on the positive. Just like anyone else, children with autism spectrum disorder often respond well to positive reinforcement. That means when you praise them for the behaviors they’re doing well, it will make them (and you) feel good.
Be specific, so that they know exactly what you liked about their behavior. Find ways to reward them, either with extra playtime or a small prize like a sticker.
Also, as you would with anyone — on the spectrum or not — prize your child for who they are. As a parent, loving your child for who they are is key.
Stay consistent and on schedule. People on the spectrum like routines. Make sure they get consistent guidance and interaction, so they can practice what they learn from therapy.
This can make learning new skills and behaviors easier, and help them apply their knowledge in different situations. Talk to their teachers and therapists and try to align on a consistent set of techniques and methods of interaction so you can bring what they’re learning home.
Put play on the schedule. Finding activities that seem like pure fun, and not more education or therapy, may help your child open up and connect with you.
Give it time. You’ll likely try a lot of different techniques, treatments, and approaches as you figure out what’s best for your child. Stay positive and try not to get discouraged if they don’t respond well to a particular method.
Take your child along for everyday activities. If your child’s behavior is unpredictable, you may feel like it’s easier not to expose them to certain situations. But when you take them on everyday errands like grocery shopping or a post office run, it may help them get used to the world around them.
Get support. Whether online or face-to-face, support from other families, professionals, and friends can be a big help. Create a village of friends and family who understand your child’s diagnosis. Friendships may be difficult, and your child will need support in maintaining those friendships. Support groups can be a good way to share advice and information and to meet other parents dealing with similar challenges. Individual, marital, or family counseling can be helpful, too. Think about what might make your life a little easier, and ask for help.
Look into respite care. This is when another caregiver looks after your child — inside your home, outside of it, or both — for a period of time to give you a short break. You’ll need it, especially if your child has intense needs due to ASD. This can give you a chance to do things that restore your own health and that you enjoy so that you come back home ready to help.
You can identify or form your respite support team using these methods:
Ask your friends, family, and other parents you know for support connections you might not have thought about.
Check with your child’s doctors, therapists, and teachers for ideas or referrals. For instance, a teacher’s aide you really like might enjoy babysitting in their free time.
You can also post notices for childcare help in newspapers and online, local religious communities, and at colleges and universities near you. Be sure to check all references carefully.
Join a support group for parents of autistic children. Find out what works for others. You can find self-help communities by calling a local autism support center or looking online.
Take care of yourself. As a caregiver, you need to keep your body and your mind in tip-top shape so you can face the challenges that crop up from day today. This means slowing down and looking for ways to take care of yourself so you’ll have plenty of you (physically, mentally, and emotionally) to go around.
Cut your stress. Parents of kids with ASD often face more stress than those who deal with other disabilities. If left unchecked, caregivers can face breakdowns in relationships and even psychological disorders. Stress can affect your health, too. Stay organized to help yourself avoid getting overwhelmed. This means finding time in your day just for yourself. Some important and even fun ways to do that include:
Pinpoint the real causes of your stress. If you feel overwhelmed, break down the major issues you’re facing into easier bites. You’ll feel better, and you’ll have a plan.
Meditation may help, too. Pay attention to your thoughts and the way you talk to yourself. It’ll help you weed out useless worries.
Exercise. You don’t need to go to the gym. Walk, work in the garden, swim, even dance in the kitchen. These are easy, effective ways to get some exercise.
If you want some adult company, take an exercise class. It’s a great way to recharge your batteries and meet new people.
Get some ZZZs. When you need to recharge your body and mind, you can’t beat the power of a good night’s sleep. If you need extra help winding down, meditate or do relaxation exercises. That can help your body get ready for rest.
Get creative with your food. You likely spend lots of energy making sure your child eats nutritious meals. What about you? Spice up your personal menu by trying different fruits, veggies, and cuisines. Scope out new recipes to keep things interesting. And eat on a set schedule each day. It’ll help you keep your energy up and your system on track.
Get balance in your life. This is the key not only to facing life’s challenges but also to keeping a high quality of life. Your whole family will benefit. Book time in your weekly calendar for fun and socializing. Try these tips to add balance to your busy days:
Find your friends. Yes, you’re the parent of a special-needs child. But you’re a person, too. Remembering that you have your own identity makes you a better parent. Take time to reconnect and laugh with your friends. You’ll be glad you did.
Take up old hobbies. Track down your knitting needles, dust off the piano, or get out the golf clubs. Try new activities that catch your eye.
Take five every day. A few extra minutes first thing in the morning can center you and set the tone for the whole day. Gather your thoughts, take a long, warm shower, or jot some notes in a journal.
Make it quick. Can your partner or other family members take over parenting duties for a bit? A quick walk around the block or short drive to the store — by yourself — will give you some much-needed time to yourself.
Welcome to Club Spectrum! You didn’t want to be here. Don’t feel bad about that. No one signs up for this gig. Think of it this way — at least you now know what the Hell is going on. Better than not knowing at all. Mama Fry ain’t no expert, but I do have some tips that help you from going crazy.
1) Pace yourself.
You are about to start a never-ending marathon. Know when to take a break. Embrace the couch and some bad TV. Or if you are one of those gym goers, do that. Avid reader? Go fire up that Kindle or go old school and buy a few books. You’re going to have a lot of time in therapy waiting rooms. Might as well enjoy reading some check-your-brain-at-the-door novels. Know it’s okay to get absolutely nothing done on some days. Or weeks.
2) Get off the Internet.
It can scare the crap out of you. Seriously, stop playing “Dr. Autism Google.” You’re looking for the autism cure needle in a Internet haystack. Step away from the search engine.
3) Get on the Internet.
I know, opposite advice. Here’s the twist. Get on social networking sites. Talk to other parents. Get to know them. Not just what they did to treat X, Y and Z. You’ll get a better understanding if those choices are right for you. Autism can make parents feel very isolated. Sometimes it is hard to get out and network. Facebook, Twitter and online groups are awesome. Mainly because when you are in the dark on your kid’s iPad hoping like heck the melatonin will kick in soon, you can chat away. (Don’t you go Googling “melatonin” yet. You read this all first, buddy!). Autism parents/caregivers are always awake somewhere on the planet.
4) Be prepared to hear a lot of advice you did not ask for.
Warning: it never ends. I find sarcasm and raising my eyebrows over my glasses helps a lot.
5) Respect your elders in the ASD world.
Now don’t go taking their world as gospel but recognize what they do works for them. You’ll see why as you earn your stripes. The kiddo is 8, and we’ve been dealing with all things autism since he was younger than 2. Trust me, newb, what you are telling me to try, we’ve done. Seriously, do you really want to be the type of person I just described in item number four? Don’t be that know-it-all parent out the gate. Remember they have been sleep deprived much longer than you. They will be quick to shut you down.
6) Accept the fact that you are going to try stuff that is totally not going to work.
That miracle thingie you just read about in a chat group won’t do jack all for your kid. Meanwhile every other kid who has, is thriving. It’s the luck of the draw with this, folks. You meet one kid with autism, you have only met one kid with autism. Some cures/therapy/meds will be duds.
7) Autism is effing expensive.
So when Grandma or Uncle Frank wants to know what your lovey wants for their birthday, CASH IS KING! Don’t be afraid to ask for therapy and/or lessons for something as gifts. These folks care about you and your kid. They’ll be happy to know what they bought is actually getting used, not sitting around collecting dust.
8) Accept that some folks who buy gifts for your kid won’t do the above.
You’re going to get a lot of gifts that your kid won’t even be remotely interested in. They meant well. They knew it was a hot toy. Save it. You never know. Maybe in a year or two, your kid might like it. Or donate it. Regift it. Return it for therapy cash.
9) Be open to doing stuff you think is ridiculous.
You really just don’t know what your kid is going to respond to. Give it an honest college try before you realize if it’s a hit or a miss. This means diet, meds, etc.
10) Take your kid out everywhere.
I’m serious. It may be a small trip at first but it is the best thing you can do. You’re teaching them coping skills. Life happens. People have to food shop, go to the bank, post office, etc. You would be doing it anyway if your kid didn’t have autism. Know their limits of course. Baby steps first. Today, it’s a trip to buy milk. Another time, maybe it’s a trip to the pet store and the library. Life from now on will take military-like planning. Warn them what’s coming, but go about your business. They smell fear. Seriously, the more panicked you are, they will turn that dial to “11.”
11) Allow yourself a pity party.
Moan, cry, rant and rave and do it when you need to. More than once. Just remember you still have a kid that needs you. So don’t dwell in it too long. If you find yourself doing it too far too frequently, know when to ask for help. Be it from a partner, family member, friend or doctor. Yes, this isn’t what you planned, but it’s here. So now what? Exactly.
This isn’t about getting through it to an endpoint. This is your life now. This is your new normal. I can’t promise it will get easier. You will just get better at dealing with it. Be it through humor, prayer, yoga, crafting, blogging or a thousand other escapism activities. You will do this. You can do this. Remember for as hard as you are working, so is your child. So now and then, relax and just order another side of fries.
“Our personal journey into this world of autism began just over eight years ago with the birth of our son, Perry. Since the beginning, he struggled immensely. The first thing we noticed was that he seemed very restless. He was always unsettled. He had a lack of recognition in his eye. He didn’t eat. He didn’t sleep. As each day passed, we recognized more ‘red flag’ characteristics of autism with repetitive behaviors, speech/sound delays and more.
“I put Perry’s name on the waiting list of every developmental pediatrician in and around Atlanta. I was told there would be a minimum 6 month wait time. Meanwhile, at 12 months of age, he was found to be eligible for the Babies Can’t Wait program (Georgia’s early intervention system) due to his developmental delays and he began a steady course of daily therapies. When Perry was 15 months old, we finally got an appointment with a Developmental Pediatrician. The doctor confirmed what I already knew: Perry has autism.
“I cried all the way home. I cried for 2 days, hoping and praying that I would be able to provide this child everything he needed. My research recommended 40 hours of ABA (applied behavior analysis) therapy, which insurance would not cover. I also found thousands of pages of different treatment approaches, all of which claimed to be effective in treating autism. I could not afford to make the wrong choice. My son’s future depended on it.
“In addition, I was 7 months pregnant with our daughter. Margeaux was born blue and immediately faced feeding and sleeping problems of her own. Margeaux’s health struggles continued, one after the other. She was also restless, but in a different way than Perry had been. When Margeaux was 12 months old, we found ourselves undergoing our second Babies Can’t Wait (Georgia’s early intervention system) evaluation. Margeaux’s therapy began and Perry’s therapy continued. Now there were two therapy schedules to juggle. Her ‘official’ Asperger’s diagnosis came at age 5. It was a long road.
“While typical children are scheduling play dates and extracurricular activities, our children’s lives are about therapies, day after day, year after year, usually 7 days a week. People on the outside cannot grasp the necessary skills that our children require help with.
“My incredibly special children have been a true gift. Of course, like any mother, I would take away their struggles if I could. I strive every day to be the kind of parent they deserve. I hope I am as much a gift to them as they are to me. They are a bright spark in so many lives.
My ultimate hope is that one day soon my children will live in a world where they will be accepted and appreciated, despite their differences. As long as I am here, I try to surround them with people who love and accept them as they navigate this world, because autism never takes a day off.”
CDC would like to thank Mary Elizabeth and her family for sharing her personal story.Top of Page
Carrie’s Story
Jack, the author’s son
Let’s play a game, okay? I’ll give you a bunch of clues, and you try to guess who I am.
I am not a person, place, or thing. You can’t see me or touch me or smell me.
I am considered a human condition, but really I am a collection of symptoms.
He doesn’t play with other kids.
She doesn’t like it if we drive home a different way.
He’ll sit and take the vacuum apart for hours.
She doesn’t look at me.
I am the twitching finger and the flapping hand.
I am the silent toddler with downcast eyes and a tippy-toe walk.
I am a diagnosis, a disorder; a box you check on the medical form or a postscript at the end of an email.
I will make you have bad days and good days and bad days then good.
I live in each and every one of you, whether you know it or not.
I am the cocktail party that makes you shy and the tag on your shirt that makes you itch. I am the sticky crunch of strawberry seeds and the overwhelming hum of the air conditioner.
I make some people jump and flap, while others chew gum or run for miles or twirl their hair.
I am the Baby Einstein DVD on repeat.
I am long, neat rows of Thomas the Tank engines snaking around your family room. Seeing these rows will make you feel frantic; frustrated and nervous and empty.
I am hours of Minecraft.
Some days, I taste like shame and bitterness, burning up from a mother’s heart like sour indigestion.
But other days, I taste like the purest joy; like cotton candy and happiness and pride exploding within your heart.
I am in schools and movie theaters, playground and libraries.
For some reason, people celebrate me in April. They use the color blue. But I am actually all the colors of the world; red for Saturdayexternal icon and yellow for the too-bright sun.
But I am also color blind.
I am in India. I am in Jamaica. I am in the Philippines and Wisconsin and Sierra Leone. You can find me in Russia and Japan, San Francisco and Belgium.
Maybe you sit across from me at your dinner table every night, or maybe you look up to see my reflection in the mirror when you brush your teeth before bed.
I live within a 10-year old boy in New Hampshire. His name is Jack.
One year, I made him afraid of wind. So afraid, in fact, that he would not go outside all winter.
The next year, it was dogs.external icon Because of me, he wouldn’t cross the street if someone was walking their Pug or their Golden Retriever.
And this boy Jack, well, I make him work hard for the things that come naturally for others; language and jokes and facial expressions. He spends a lot of his day anxious and confused. I am his enigma wrapped up in Waffle Thursday and Pancake Saturday.
Mom it is Thursday Thursday for waffles for waffles waffles waffles.
I have been around since the beginning of time, despite the façade of normal assembled by generations before you.
There is no normal. I am here to tell you this.
It is up to you how you see me; as a nuisance, a tantrum, a disorder, or a curious lamb wearing the costume of a wolf. Can you look past my long, yellow teeth and matted hair, and find the soft, gentle child underneath?
Because of me, Mozart wrote long, complicated symphonies. His hearing was rumored to be so sensitive, he could tell the difference in the slightest tone.
Historians explain the way Michelangelo made sketch after sketch until the final pose was perfect in his rigid, unbending mind. Because of me, the Sistine Chapel explodes with light and color. Records show that Albert Einstein did terribly in school. He didn’t learn the same way as all the other kids.
And Sir Isaac Newton of the fallen apple had no friends. He didn’t understand people, and he insisted on a strict, unwavering routine.
And there is Temple Grandin; a woman so intelligent, so compassionate, that she revolutionized the cattle industry through sheer perseverance and determination.
You see, a still mind can still have great thoughts, and within even the quietest person, there is a voice. Or a painting, or a song.
I am so many things. I am hope and possibility. I am music and dreams, kindness and color. I am gravity.
So please, before you panic or judge—before you race for a cure or rush to call me weird—try to remember my value. Remember my goodness.
I will teach you the real meaning of unconditional love; a love so powerful and strong it will rearrange your heart.
At first, you probably won’t even realize that you are learning from me. I am so subtle, I am practically invisible.
But every hour, every day, every year, you and I will make our peace. You will step carefully over the long rows of trains, and admire the complicated cities in Minecraft.
Every Thursday at dawn you will turn on all the lights in the kitchen, and take out the waffle iron for a boy who at last said Mama.
You will forget normal.
I am autism. And I will make you better. I will make your family better.
If you let me, I will make the world better.
Carrie Cariello is a mother and author of the book “What Color is Monday? How Autism Changed One Family for the Better”. CDC would like to thank Carrie for sharing her personal story. An extended version of this story was originally posted on her blogexternal icon on March 9, 2015.Top of Page
Alexis’ Story
Alexis Wineman is the first woman with autism spectrum disorder (ASD) to participate in the Miss America competition. Alexis was in middle school when officially diagnosed with PDD-NOS (Pervasive Developmental Disorder- Not Otherwise Specified), but felt “different” from an early age. As she got older, she struggled with some of the challenges that come with having ASD, such as a speech impediment, communication difficulties, and being sensitive to loud sounds, and other sensory-related issues. Alexis also had to deal with bullying that occurred because of her differences. Fortunately, her family has always been a source of strength and inspiration for her. We interviewed Alexis, her mother Kimberley, her older brother Nicholas, and her older sister Danielle, and her twin Amanda to hear more about the unique role that siblings play in families living with ASD.
“My advice for other individuals with autism would be to have patience for your siblings just like they have patience for you.”
Alexis’ Perspective
Prior to being diagnosed with autism, neither I nor my family had an explanation for my meltdowns and other issues. After the diagnosis, it was incredible how my siblings reacted. They were superheroes. They took me everywhere and pushed me into activities. They helped me with homework. It was just amazing how they sprang into action after years of not knowing what was going on.
My advice for other individuals with autism would be to have patience for your siblings just like they have patience for you. It’s good to try and figure out what’s going on from their perspective rather than focusing on yourself.
Kimberley’s Perspective
Once Alexis was diagnosed and we knew what we are dealing with, her siblings took control. They shoved her into things and got her involved. They wouldn’t let her use autism as a crutch or excuse for not being involved. Her brother got her into cross-country and her sisters got her into cheerleading. All three siblings got her into speech and drama. Had she not been involved in those activities, she wouldn’t have been able to accomplish all that she has accomplished. Alexis was able to find activities where she was accepted, and she wouldn’t have found those on her own.
Her siblings also became very protective and helped with the teasing and bullying. Siblings can be such a positive force for combatting bullying. They can educate the peer group. That’s something a sibling can be much more effective at than a parent.
My advice for someone who has a sibling with autism would be to engage them and help them find their niche.
Nicholas’ Perspective
Before Alexis was diagnosed, we just didn’t understand why she was acting out. It was very confusing and frustrating. After the diagnosis, things made a lot more sense. Being able to help and take preventive measures, it was a whole new world. It has made us all better people. We learned patience.
It was a common occurrence that we would get into fights, but being able to make up and process what happened was different for Alexis compared to the rest of us. With Alexis, when the fight was over, the board was erased clean. In other words, five minutes later everything was completely back to normal. It seemed like she was doing it to annoy you, but she wasn’t. Not understanding why it was so easy for her to get over a fight was hard. Going through experiences like this makes you have to be more understanding. You learn that people handle things differently.
My advice for someone who has a sibling with autism would be to practice empathy. I consider myself to be empathetic and living with Alexis was a huge part of that.
Danielle’s Perspective
My brother and I had to do some growing up fast. You have to take on a parenting role when you’re trying to understand what’s going on. From the time she was diagnosed, it opened our eyes to understanding people with disabilities. We have openness to people with differences and are able to maintain that empathy. We’ve grown up having to deal with all levels of ups and downs.
I played a second mom when Alexis was younger. If she didn’t listen to mom, I’d go in and say the same thing. Sometimes it’s easier to have someone on her level explain things or give her the opportunity to vent.
My advice for someone who has a sibling with autism is that you have to become a solid shadow for your sibling. They might not fully understand how much you are putting in to be there for them. At the end of the day, each success, no matter how small, is part of you. You deserve to celebrate too. When you’re diagnosed with autism, it’s a diagnosis for the entire family and not just that person. It’s really a test of family.
Amanda’s Perspective
Having a twin is how we figured out there was a problem. There was a direct comparison to a neuro-typical child, and they could see that Alexis wasn’t meeting milestones the way I was. When I was little, whenever I came home from school, I tried to teach her to do things that I had learned so that she could keep up with me.
We are now roommates in college. But I still have to wake her up and help keep her on a schedule. It’s been interesting to see how people in college react to our interactions. They don’t understand that I’m acting in a couple of different roles—sometimes as a sibling and sometimes more as a mother.
My advice for someone with a sibling with autism is to be patient. As stressful as the role you have to play is, it’s also rewarding. If you try to be patient, you get to share in success. Alexis’ America’s Choice Award during the Miss America competition ranks as one of the highlights of my life because I got to share in that success. Never give up on trying to help.
There are many things you can do to help a child with Autism Spectrum Disorder (ASD) overcome their challenges. These parenting tips, treatments, and services can help.
A parent’s guide to autism treatment and support
If you’ve recently learned that your child has or might have autism spectrum disorder, you’re probably wondering and worrying about what comes next. No parent is ever prepared to hear that a child is anything other than happy and healthy, and an ASD diagnosis can be particularly frightening. You may be unsure about how to best help your child, or confused by conflicting treatment advice. Or you may have been told that ASD is an incurable, lifelong condition, leaving you concerned that nothing you do will make a difference.
While it is true that ASD is not something a person simply “grows out of,” there are many treatments that can help children acquire new skills and overcome a wide variety of developmental challenges. From free government services to in-home behavioral therapy and school-based programs, assistance is available to meet your child’s special needs and help them learn, grow, and thrive in life.
When you’re looking after a child with ASD, it’s also important to take care of yourself. Being emotionally strong allows you to be the best parent you can be to your child in need. These parenting tips can help by making life with an autistic child easier.
Don’t wait for a diagnosis
As the parent of a child with ASD or related developmental delays, the best thing you can do is to start treatment right away. Seek help as soon as you suspect something’s wrong. Don’t wait to see if your child will catch up later or outgrow the problem. Don’t even wait for an official diagnosis. The earlier children with autism spectrum disorder get help, the greater their chance of treatment success. Early intervention is the most effective way to speed up your child’s development and reduce the symptoms of autism over the lifespan.
When your child has autism
Learn about autism. The more you know about autism spectrum disorder, the better equipped you’ll be to make informed decisions for your child. Educate yourself about the treatment options, ask questions, and participate in all treatment decisions.
Become an expert on your child. Figure out what triggers your kid’s challenging or disruptive behaviors and what elicits a positive response. What does your child find stressful or frightening? Calming? Uncomfortable? Enjoyable? If you understand what affects your child, you’ll be better at troubleshooting problems and preventing or modifying situations that cause difficulties.
Accept your child, quirks and all. Rather than focusing on how your autistic child is different from other children and what he or she is “missing,” practice acceptance. Enjoy your kid’s special quirks, celebrate small successes, and stop comparing your child to others. Feeling unconditionally loved and accepted will help your child more than anything else.
Don’t give up. It’s impossible to predict the course of autism spectrum disorder. Don’t jump to conclusions about what life is going to be like for your child. Like everyone else, people with autism have an entire lifetime to grow and develop their abilities.
Helping your child with autism thrive tip 1: Provide structure and safety
Learning all you can about autism and getting involved in treatment will go a long way toward helping your child. Additionally, the following tips will make daily home life easier for both you and your child with ASD:
Be consistent. Children with ASD have a hard time applying what they’ve learned in one setting (such as the therapist’s office or school) to others, including the home. For example, your child may use sign language at school to communicate, but never think to do so at home. Creating consistency in your child’s environment is the best way to reinforce learning. Find out what your child’s therapists are doing and continue their techniques at home. Explore the possibility of having therapy take place in more than one place in order to encourage your child to transfer what he or she has learned from one environment to another. It’s also important to be consistent in the way you interact with your child and deal with challenging behaviors.
Stick to a schedule. Children with ASD tend to do best when they have a highly structured schedule or routine. Again, this goes back to the consistency they both need and crave. Set up a schedule for your child, with regular times for meals, therapy, school, and bedtime. Try to keep disruptions to this routine to a minimum. If there is an unavoidable schedule change, prepare your child for it in advance.
Reward good behavior. Positive reinforcement can go a long way with children with ASD, so make an effort to “catch them doing something good.” Praise them when they act appropriately or learn a new skill, being very specific about what behavior they’re being praised for. Also look for other ways to reward them for good behavior, such as giving them a sticker or letting them play with a favorite toy.
Create a home safety zone. Carve out a private space in your home where your child can relax, feel secure, and be safe. This will involve organizing and setting boundaries in ways your child can understand. Visual cues can be helpful (colored tape marking areas that are off limits, labeling items in the house with pictures). You may also need to safety proof the house, particularly if your child is prone to tantrums or other self-injurious behaviors.
Tip 2: Find nonverbal ways to connect
Connecting with a child with ASD can be challenging, but you don’t need to talk—or even touch—in order to communicate and bond. You communicate by the way you look at your child, by the tone of your voice, your body language – and possibly the way you touch your child. Your child is also communicating with you, even if he or she never speaks. You just need to learn the language.
Look for nonverbal cues. If you are observant and aware, you can learn to pick up on the nonverbal cues that children with ASD use to communicate. Pay attention to the kinds of sounds they make, their facial expressions, and the gestures they use when they’re tired, hungry, or want something.
Figure out the motivation behind the tantrum. It’s only natural to feel upset when you are misunderstood or ignored, and it’s no different for children with ASD. When children with ASD act out, it’s often because you’re not picking up on their nonverbal cues. Throwing a tantrum is their way of communicating their frustration and getting your attention.
Make time for fun. A child coping with ASD is still a child. For both children with ASD and their parents, there needs to be more to life than therapy. Schedule playtime when your child is most alert and awake. Figure out ways to have fun together by thinking about the things that make your child smile, laugh, and come out of her/his shell. Your child is likely to enjoy these activities most if they don’t seem therapeutic or educational. There are tremendous benefits that result from your enjoyment of your child’s company and from your child’s enjoyment of spending unpressured time with you. Play is an essential part of learning for all children and shouldn’t feel like work.
Pay attention to your child’s sensory sensitivities. Many children with ASD are hypersensitive to light, sound, touch, taste, and smell. Some children with autism are “under-sensitive” to sensory stimuli. Figure out what sights, sounds, smells, movements, and tactile sensations trigger your kid’s “bad” or disruptive behaviors and what elicits a positive response. What does your child find stressful? Calming? Uncomfortable? Enjoyable? If you understand what affects your child, you’ll be better at troubleshooting problems, preventing situations that cause difficulties, and creating successful experiences.
Tip 3: Create a personalized autism treatment plan
With so many different treatments available, it can be tough to figure out which approach is right for your child. Making things more complicated, you may hear different or even conflicting recommendations from parents, teachers, and doctors.
When putting together a treatment plan for your child, keep in mind that there is no single treatment that works for everyone. Each person on the autism spectrum is unique, with different strengths and weaknesses.
Your child’s treatment should be tailored according to their individual needs. You know your child best, so it’s up to you to make sure those needs are being met. You can do that by asking yourself the following questions:
What are my child’s strengths – and weaknesses?
What behaviors are causing the most problems? What important skills is my child lacking?
How does my child learn best – through seeing, listening, or doing?
What does my child enjoy – and how can those activities be used in the treatment and to bolster learning?
Finally, keep in mind that no matter what treatment plan is chosen, your involvement is vital to success. You can help your child get the most out of treatment by working hand-in-hand with the treatment team and following through with the therapy at home. (This is why your well-being is essential!)
A good treatment plan will:
Build on your child’s interests.
Offer a predictable schedule.
Teach tasks as a series of simple steps.
Actively engage your child’s attention in highly structured activities.
Provide regular reinforcement of behavior.
Involve the parents.
Choosing autism treatments
There are many different options and approaches to ASD treatment, including behavior therapy, speech-language therapy, physical therapy, occupational therapy, and nutritional therapy.
While you don’t have to limit your child to just one treatment at a time, it’s unlikely you’ll be able to address everything at once. Instead, start by focusing on your child’s most severe symptoms and pressing needs.
Caring for a child with ASD can demand a lot of energy and time. There may be days when you feel overwhelmed, stressed, or discouraged. Parenting isn’t ever easy, and raising a child with special needs is even more challenging. In order to be the best parent you can be, it’s essential that you take care of yourself.
Don’t try to do everything on your own. You don’t have to! There are many places that families of children with ASD can turn to for advice, a helping hand, advocacy, and support:
ADS support groups – Joining an ASD support group is a great way to meet other families dealing with the same challenges you are. Parents can share information, get advice, and lean on each other for emotional support. Just being around others in the same boat and sharing their experience can go a long way toward reducing the isolation many parents feel after receiving a child’s diagnosis.
Respite care – Every parent needs a break now and again. And for parents coping with the added stress of ASD, this is especially true. In respite care, another caregiver takes over temporarily, giving you a break for a few hours, days, or even weeks.
Individual, marital, or family counseling – If stress, anxiety, or depression is getting to you, you may want to see a therapist of your own. Therapy is a safe place where you can talk honestly about everything you’re feeling—the good, the bad, and the ugly. Marriage or family therapy can also help you work out problems that the challenges of life with an autistic child are causing in your spousal relationship or with other family members.
Free U.S. government services for children with autism
Under the U.S. federal law known as the Individuals with Disabilities Education Act (IDEA), children with disabilities—including those with ASD—are eligible for a range of free or low-cost services. Under this provision, children in need and their families may receive medical evaluations, psychological services, speech therapy, physical therapy, parent counseling and training, assisted technology devices, and other specialized services.
Children under the age of 10 do not need an autism diagnosis to receive free services under IDEA. If they are experiencing a developmental delay (including delays in communication or social development), they are automatically eligible for early intervention and special education services.
Early intervention services (birth through age two)
Infants and toddlers through the age of two receive assistance through the Early Intervention program. In order to qualify, your child must first undergo a free evaluation. If the assessment reveals a developmental problem, you will work with early intervention treatment providers to develop an Individualized Family Service Plan (IFSP). An IFSP describes your child’s needs and the specific services he or she will receive.
For autism, an IFSP would include a variety of behavior, physical, speech, and play therapies. It would focus on preparing kids with ASD for the eventual transition to school. Early intervention services are typically conducted in the home or at a child care center.
To locate local early intervention services for your child, ask your pediatrician for a referral or use the resources listed in the Resources section at the end of the article.
Special education services (age three and older)
Children over the age of three receive assistance through school-based programs. As with early intervention, special education services are tailored to your child’s individual needs. Children with ASD are often placed with other developmentally delayed kids in small groups where they can receive more individual attention and specialized instruction. However, depending on their abilities, they may also spend at least part of the school day in a regular classroom. The goal is to place kids in the “least restrictive environment” possible where they are still able to learn.
If you’d like to pursue special education services, your local school system will first need to evaluate your child. Based on this assessment, an Individualized Education Plan (IEP) will be drafted. An IEP outlines the educational goals for your child for the school year. Additionally, it describes the special services or supports the school will provide your child in order to meet those goals.
Know your child’s rights
As the parent of a child with ASD, you have a legal right to:
Be involved in developing your child’s IEP from start to finish
Disagree with the school system’s recommendations
Seek an outside evaluation for your child
Invite anyone you want—from a relative to your child’s doctor—to be on the IEP team
Request an IEP meeting at any time if you feel your child’s needs are not being met
Free or low-cost legal representation if you can’t come to an agreement with the school
aren’t sure how to help their autistic child build confidence and a positive self-image
need a break from caring for their autistic child but don’t know how to get respite
are having trouble navigating the service system.
Although an autism diagnosis affects the whole family, family members might be stressed by different things about the diagnosis or different aspects of life with an autistic child. They might also respond to and express stress in different ways.
Some stress can be OK, giving you the motivation and focus to face challenges and get things done. But too much stress can be overwhelming, making it difficult to cope with everyday things.
So if you feel your family is having trouble coping, it’s important to do something to manage the stress in your family life.
Stress can affect individual family members, and it can also affect your relationships with each other. Recognising each other’s feelings and looking after your family relationships can help you with family stress management.
Reducing and managing stress for families with autistic children
Although stress is a normal part of family life, too much stress can have a negative effect. There are practical things you can do to manage your family’s stress. Managing stress is good for the emotional and mental health and wellbeing of everyone in your family.
Positive thinking and self-talk Positive thinking and self-talk increase your positive feelings. And feeling positive increases your ability to cope with stressful situations.
For example, you might have a negative thought like ‘People probably think I’m a bad parent’. You can challenge this thought by asking yourself, ‘How do I know that people will think this?’ You might also use more positive thoughts, like ‘Who cares what other people think?’, ‘I can do this’, or ‘I will stay calm’.
The more you practise positive self-talk, the more automatic it will become in your life. Start practising in one situation that causes you stress, and then move on to another one.
Relaxation and breathing strategies Practise some breathing exercises and muscle relaxation techniques. If you practise and use relaxation exercises as soon as you feel signs of stress, or when you know you’re going into a situation that makes you stressed, it can calm things down.
You could also set aside a little bit of time each day for relaxation, meditation or mindfulness. Even 10 minutes at the beginning or end of the day could be enough. This might help you sleep better and feel more positive during the day.
Getting organised Stress is often related to the feeling that things are out of your control. Getting organised is a very effective way to get things – including your stress levels – under control.
For example, if you have a list of things you need to do, you can work through the list, focusing on just one thing at a time. And you’ll feel good as you cross things off the list.
You could also try putting some family routines into action. Routines help your family get through your tasks more efficiently and free up time for more enjoyable things. You can adjust these routines for children with additional needs.
Making time for enjoyable family activities When you have an autistic child, you might forget to make time for yourself. You can reduce the stress levels in your family by making sure that all family members – including you – have time to do things that make them feel good.
One way to do this is by getting everyone in your family to make a list of things that they enjoy. Then try to make sure that everyone gets to do something from their list every day or every couple of days. The lists should have a mix of activities that vary in cost and time.
Maintaining and modifying family traditions and rituals Family traditions and rituals can give you a sense of belonging and togetherness. This can strengthen your family relationships, which will help you get through stressful times.
You might have to modify your traditions to suit the needs of your autistic child. For example, it might be less stressful to plan a weekend camping trip a little closer to home so you spend less time in the car.
Support from family and friends When a child gets an autism diagnosis, family and friends can be a great source of practical support.
It’s good to ask for help if you need it. It could be as simple as asking an extended family member to babysit for a few hours one night, or asking an older niece or nephew to take your children to the park. This could turn into a fun activity for your child and extended family member, as well as giving you some time to yourself or time to get other things done.
Respite Respite care can give you a break from caring for your autistic child and help you manage stress. If you feel worried about leaving your child with someone outside the family, make some time for respite carers to get to know your child before they care for your child.
Getting help with stress
If you or any other family members are feeling very stressed every day, it might help to talk to a health professional. You could start by seeing your GP, who can help you make a plan for managing stress. This might include referring you or other family members to another health professional for some specialist support.
Your family can also get support from the following services:
Respite care – contact your state or territory autism association, or a Commonwealth Respite and Carelink Centre. You can find your local centre by calling 1800 052 222 during business hours, or on 1800 059 059 for emergency respite support at other times.
NDIS support – contact the National Disability Insurance Scheme to find out about support to help your child reach their individual goals and live the life they want.
Support groups – contact local or online groups to connect with other people in similar situations.
Financial support – contact Centrelink about carer allowance, carer payment and other financial support.
Bringing up a child with autism can be challenging, and, in some cases, overwhelming.1 Children with autism don’t communicate, play, or behave like their neurotypical peers, and their behaviors can be confusing, frustrating, or frankly upsetting to parents.
At the same time, children with autism have strengths and abilities that can only emerge when a parent is tuned in and willing to engage in a way that works best for their child. This means that, when you have a child with autism, it’s not always best to just go with what feels natural to you as a parent.
Sasiistock / istockphoto
You may need to modify your parenting style or natural preferences to meet your child’s needs. In other words, you may need to consciously avoid these parenting styles that can quickly undermine your relationship with your child on the autism spectrum.
Helicopter Parenting
Helicopter parents hover over their children, watching and reacting to their every move. They leap in to help when a problem appears on the horizon; they intervene to smooth every path; they insist on special treatment for their progeny.
Helicopter parenting is less than ideal for any child, as it makes independence and self-determination especially difficult to achieve.
Parents of children with autism are prone to helicopter parenting because they worry that their child with autism will run into problems they can’t resolve—and, of course, that’s perfectly possible.
But if helicopter parenting stunts the development of typical children, imagine what it does for children with autism. Unable to learn by observation and example, children with autism must learn through direct instruction and by actually doing.
When you step in to do their work, you’re denying your child the opportunity to understand what’s needed, experience the challenge of trying, enjoy the thrill of success, or gain the knowledge developed through the process of failure.
Competitive Parenting
Any parent who’s been part of a Mommy and Me group knows all about competitive parenting. Whose baby potty trained first? Said the first word? Is taking the most classes, learning to dance or sing, playing peewee soccer, or studying Chinese?
When you have a child with autism, it can be hard to avoid feeling that your child is being left behind. But when you buy into competitive parenting, you are certain to develop a sense that your child is not up to par and that you, as a parent, are probably to blame.
As you can imagine, the outcome is a feeling that neither you nor your child is good enough. The impact of such feelings on a child with autism may not be obvious, but they are real.
Hands-Off (Free-Range) Parenting
Some parents believe that their child should be allowed to follow their own pursuits and interests without parental interference. That works well for certain typical children who are self-directed, self-motivated, and eager to interact with others. It’s not, however, a very good choice for a child with autism.
While every child certainly needs and deserves “down” time, children with autism really do need regular, focused parental engagement. That’s because, in most cases, children with autism need your help to actively learn to pretend, socialize, converse, ask questions, and investigate the world.
Without another person to help them build these critical skills, children with autism can become increasingly withdrawn and self-focused—and less capable or desirous of engaging in the wider world. They’ll also have less opportunity to build on their strengths and achieve their own potential.
Perfectionist (Tiger) Parenting
Yes, some children thrive with parents who absolutely insist upon straight A’s, top athletic performance, perfect grammar, and ideal table manners. Those children are unlikely to be autistic.
The reality is that children with autism, while they may have many strengths, are likely to have a very tough time with many typical childhood expectations. Their verbal skills may be compromised, making high grades and perfect grammar almost impossible to achieve. They may have difficulty with physical coordination, making athletics particularly tough.
Of course, it’s important to have high expectations, even for a child with special needs, but make those expectations too high, and you and your child are in for tears and frustration.
Permissive Parenting
As the parent of a child with special needs, you may feel that your child should have no expectations placed on them when the child is not at school or therapy. After all, it’s tough for autistic kids to function in school, and they deserve a break.
You may even feel it’s unreasonable to ask your child to complete household tasks, learn to calm themselves, or control their behavior. The unfortunate result of this kind of “do whatever you want” parenting teaches your child to learn habits and behaviors that will create serious problems down the line.
Autism does make some things more difficult, but in almost every case children with autism can do a great deal if they are asked and encouraged to do so. When you set the bar low, or offer your child with autism too little discipline, you are actually making it more difficult for them to understand or live up to high expectations.
Since they woke up this morning, your preschooler with autism has had five hours of behavioral therapy, an hour apiece of speech and physical therapy, two hours of parent-guided play therapy, and four hours of school.
As soon as your child falls into an exhausted sleep, you jump on the Internet to find yet another therapeutic class, program, activity, or resource to add to the schedule. With so much going on, your child with autism has no opportunity to practice what he’s learned, to actually meet and get to know another child, or to simply do what children do—play.
Rather than frantically searching for and engaging in therapies and activities, consider the possibility that a few hours a day of calm, unfocused parent-and-child time might be just the thing your child needs to grow and thrive.
A Word From Verywell
No parent is perfect, and parents of children with special needs are under more pressure than most. Some autism parents are coping with severe behavioral issues that can even be frightening. That means you may be more overwhelmed, tired, frustrated, or anxious than the average parent, and have fewer financial or emotional resources to bring to the table.
When you’re feeling overwhelmed, it’s more than okay to reach out for respite or support, whether from other family members and friends or from local organizations that provide services to families with disabled members. Remember that, important as your child is, you also deserve time and care.
Having autism as a parent might seem impossibly challenging. But a generation of parents with the condition is showing that it can be an advantage — even when their child does not share the diagnosis.
It’s going on 8 p.m., and Kirsten Hurley’s house in West Cork, Ireland, is a scene of happy chaos. The children — Alex, 9, and Isla, 4 — have been promised chocolate if they stay out of their mother’s hair while she talks with a journalist via Skype.
But the bribe doesn’t seem to be working — at least not with Isla, who climbs up her mother’s back and somersaults over her shoulder, cackling with delight.
“This is something that drives me nuts,” Hurley says. The nonstop and often intense sensory inputs that come along with being a parent — being grabbed at, being climbed on, listening to the drone of “Mom, Mom, Mom, Mom, Mom” — can be difficult for her to handle because she has a mild form of autism sometimes known as Asperger syndrome.
Hurley was diagnosed with Asperger syndrome at age 23, when her son was about 14 months old. Alex received his own autism diagnosis about a year later. (In the United States, Asperger syndrome was subsumed into the larger category of autism spectrum disorder in 2013, but in Ireland and elsewhere it remains a distinct diagnosis.)
In some ways, their shared condition has made it easy for Hurley to parent her son. “Alex always kind of seemed really logical to me,” she says. Isla, by contrast, does not seem to be on the spectrum, and her ordinary preschooler behavior sometimes baffles her mother. She has an insatiable need for attention, from Hurley’s perspective, and she might do something like reject a cup of orange juice moments after specifically requesting orange juice. “The things she does that I think are really abnormal because Alex didn’t do them are actually, like, typical children things,” Hurley says, laughing.
Hurley handles many such puzzles of being a parent on the autism spectrum with self-awareness and a healthy dose of humor. But at times, when she has reached out for help she has been misunderstood. Hurley once mentioned to a new therapist she was seeing that she has Asperger syndrome. The therapist asked if she loved her children — “which wasn’t very helpful,” Hurley says. “People have these kinds of misconceptions about people with autism, that they don’t feel emotion.”
Hurley is not so far out of the ordinary as one might assume: A surprising number of people diagnosed with autism are raising children. An online survey recruited more than 300 mothers with autism, suggesting that there are probably thousands of parents diagnosed with autism worldwide, and perhaps hundreds of thousands or millions without a diagnosis. More evidence comes from Facebook groups, messaging platforms and blog comments, where parents compare notes and share problem-solving strategies.
Autism can pose challenges for parenting, their stories indicate. In addition to dealing with sensory overload, helping a child learn social skills can be difficult for people who struggle with social interactions themselves, for example. But autism can also provide valuable parenting skills, especially with a child who is also on the spectrum.
Still, as far as the scientific literature is concerned, these parents might as well not exist. It’s only in the past few years, since scientists have become interested in studying adults with autism, that they have begun to ask questions about this group of parents. “I think what we’re seeing now in the 21st century is a recognition that people with autism are perfectly capable of participating in all aspects of life, but they may have been doing that almost invisibly — and that includes parenthood,” says Simon Baron-Cohen, director of the Autism Research Center at the University of Cambridge in the United Kingdom.
Dance with me: Gillan and Lizzie Drew with their daughter Izzie, at their home near Christchurch, England.
The lack of research so far not only offers these parents little support, but also leaves society unprepared for the larger wave of people diagnosed with autism who are just coming of age and may be considering having children. Without enough information or support available to them, these young people may conclude that becoming a parent is just not an option for them.
“It breaks my heart to even say those words, but that’s the message that I’ve heard: ‘Does having autism or Asperger’s, does that mean that being a parent is just not a thing for me?’” says Matthew Lerner, assistant professor of psychology, psychiatry and pediatrics at Stony Brook University in New York. The experiences of Hurley and many other parents who are pioneering what it means to be a parent with autism could temper that worry with hope.
Possible parents:
The idea that a person on the spectrum could be a parent was long considered nearly impossible. When Edward Ritvo submitted a paper on the subject to the Journal of Autism and Developmental Disorders in 1988, he titled it “Eleven possibly autistic parents.” Without that caveat, he says, he is pretty sure it would never have been published.
“That paper was rejected eight times by eight of the major psychiatric and medical journals,” says Ritvo, now professor emeritus of psychiatry at the University of California, Los Angeles. “Nobody believed it. They didn’t believe the parents had it, that autistic people could grow up and marry and have children.”
At the time, autism was perceived as a severe disorder, usually accompanied by intellectual disability, and the overwhelming emphasis of research was on children with autism. Yet the parents who appeared in that brief paper had characteristics that are now easily recognizable as features of autism: repetitive behaviors such as arm flapping and rocking back and forth, unusual rituals such as arriving exactly 30 minutes late for every engagement, social disinterest, a lack of eye contact.
Further publications from Ritvo’s team made it clear that it wasn’t an anomaly for people on the spectrum to have children: A 1994 paper described 14 people with autism who had 54 children among them. Most of them were parents of children that Ritvo’s team had seen in the clinic. Ritvo and his colleagues had become interested in these parents because they wanted to show that autism is a physiological condition with an inherited basis — and not, as was widely believed through the 1960s and 1970s, the result of psychological trauma.
Family feeling: Both parents are on the spectrum; their daughter Izzie does not seem to be.
These observations helped launch the study of autism genetics. Meanwhile, the lives of these parents went unexamined. Even now, no one knows what proportion of adults with autism have children, what proportion of their children might end up on the autism spectrum, or how common it is for children with autism to have a parent who also has the condition. And those basic questions don’t even begin to explore what life is like for parents with autism: their struggles with parenting, the strengths they bring to the task of raising children, how their hopes and fears evolve as their children grow up.
Virtually the only empirical study of the experiences of parents with autism is an online survey of 325 mothers diagnosed with autism worldwide, conducted by Baron-Cohen’s team. The unpublished data capture responses to 89 questions devised with input from women with autism. They include topics such as pregnancy and childbirth, the social experience of motherhood and the strengths and weaknesses of parents with autism.
The mothers with autism in the survey were more likely to report prenatal and postnatal depression compared with a group of 91 typical women raising at least one child with autism. They were more likely to feel isolated, and judged by others; many said they didn’t have anyone to turn to for support, and often felt unable to cope with parenting.
For some parents, the prejudice and stigma surrounding autism can have dire consequences. Damon Matthew Wise Âû and his wife saw firsthand that parents with autism are vulnerable to extra scrutiny from child welfare agencies. Wise Âû is a pioneer of the self-advocacy movement by people with Asperger syndrome and lives in Shannon, Ireland. His wife, Karen, is also on the spectrum, as are their three children, who also suffer from chronic ailments such as food intolerances, insomnia and skin conditions.
Since their youngest child was born in 2003, Wise Âû and his wife had occasionally used respite care, or temporary childcare, through the foster-care system for a few hours or a weekend. By mid-2009, with the encouragement of social workers, the younger two children were spending a few days out of the home each week. But in early 2010, the couple learned that child welfare authorities had started efforts to put all three children into full-time, permanent foster care. According to Wise Âû, the authorities never gave any legal justification for this plan. He says the episode reflects prejudice on the part of child welfare agencies that people on the spectrum aren’t suitable parents. Finally, in May 2010, the agency dropped its plan.
Wise Âû’s oldest son wasn’t diagnosed with Asperger syndrome until he was almost 16, though his parents had suspected he was on the spectrum since before he was 2 years old. Doctors and social workers “thought we caused him to exhibit autistic traits, by learning it from us,” Wise Âû recalls. The doctors suggested that the couple wanted their son to be on the spectrum — as if they had Munchausen syndrome by proxy, a psychiatric disorder in which people feign illness in their children in order to draw attention to themselves.
The couple also felt excluded by support groups for parents raising children with autism. In those groups, they sometimes encountered the sentiment that the condition is a tragedy, or a disorder to be cured. “We have been kicked and shunned for being parents who are autistic with autistic children,” Wise Âû says. (They set up a Facebook support group of their own, where talk of cures is discouraged.)
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