Stress and stress management in families with autistic children

Family stress management & autistic kids | Raising Children Network

Key points

  • Stress is a normal part of life, but families with autistic children often have a lot of stress.
  • For stress management, try making time for family activities, doing positive thinking and relaxation exercises, getting organised and more.
  • If you or other family members feel very stressed every day, talk to a health professional like your GP.

On this page:

About stress in families with autistic children

Stress is a normal part of life, something that most people and most families experience.

But families with autistic children can experience more stress than other families. For example, they might feel stressed because they:

  • are coming to terms with a diagnosis and what it means for their child
  • are finding it hard to manage daily life with an autistic child
  • are having trouble managing challenging behaviour in their autistic child
  • 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

Autism: Parents face challenges, too

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

Effective Stress Management for Parents of Children with Special Needs -  Penfield Building Blocks

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.

Parenting Styles to Avoid When Raising a Child With Autism

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.

Child cute little girl and mother holding hand together
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.

Understanding your child’s challenges is one thing; assuming your child to be incompetent is something very different.Benefits of Rules and Discipline for Children With Autism

Frenetic Parenting

Parenting Styles That Don't Work With an Autistic Child

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

Me and my neurodiverse family: 'It's chaotic, frenetic and hilarious' |  Family | The Guardian

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.

The unexpected plus of parenting with autism

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.

BY SARAH DEWEERDT16 MAY 2017

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.

Parents Gillian and Lizzie sit cross-legged in a playroom. Gillian holds the hand of her daughter, Izzie. The scene is playful.

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.

In the small family kitchen, Gillian holds her daughter, Izzie. The mom, Lizzie, washes dishes.

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.)

What Are the Treatments for Autism?

Treatment of Autism Spectrum Disorder | MGH Clay Center for Young Healthy  Minds

Even if your child hasn’t officially been diagnosed with autism spectrum disorder, they may still benefit from certain treatments. The Individuals with Disabilities Education Act (IDEA) makes those treatments possible for children under age 3 who may be at risk for developmental problems.

The type of treatment your child receives for autism spectrum disorder depends on their individual needs. Because ASD is a spectrum disorder (meaning some children have mild symptoms and others have severe symptoms) and each child who has it is unique, there are a variety of treatments.

They can include different kinds of therapies to improve speech and behavior, and sometimes medications to help manage any medical conditions related to autism.

The treatments your child can benefit from most depend on their situation and needs, but the goal is the same: to reduce their symptoms and improve their learning and development.

Behavior and Communication Treatments

Is There a Cure for Autism? | Autism - YouTube

Applied Behavior Analysis (ABA). ABA is often used in schools and clinics to help your child learn positive behaviors and reduce negative ones. This approach can be used to improve a wide range of skills, and there are different types for different situations, including:

  • Discrete trial training (DTT) uses simple lessons and positive reinforcement.
  • Pivotal response training (PRT) helps develop motivation to learn and communicate.
  • Early intensive behavioral intervention (EIBI) is best for children under age 5.
  • Verbal behavior intervention (VBI) focuses on language skills.

Developmental, Individual Differences, Relationship-Based Approach (DIR). This kind of treatment is better known as Floortime. That’s because it involves you getting on the floor with your child to play and do the activities they like.

It’s meant to support emotional and intellectual growth by helping them learn skills around communication and emotions.

Treatment and Education of Autistic and Related Communication-handicapped Children (TEACCH). This treatment uses visual cues such as picture cards to help your child learn everyday skills like getting dressed. Information is broken down into small steps so they can learn it more easily.

The Picture Exchange Communication System (PECS). This is another visual-based treatment, but it uses symbols instead of picture cards. Your child learns to ask questions and communicate through special symbols.

Occupational Therapy. This kind of treatment helps your child learn life skills like feeding and dressing themselves, bathing, and understanding how to relate to other people. The skills they learn are meant to help them live as independently as they can.

Sensory Integration Therapy. If your child is easily upset by things like bright lights, certain sounds, or the feeling of being touched, this therapy can help them learn to deal with that kind of sensory information.

Medications

ABA therapy: An effective treatment option for Autism Spectrum Disorders —  Big Sky Therapeutic Services

There is no cure for autism spectrum disorder, and there’s currently no medication to treat it. But some medicines can help with related symptoms like depressionseizures, insomnia, and trouble focusing.

Studies have shown that medication is most effective when it’s combined with behavioral therapies.

Risperidone (Risperdal) is the only drug approved by the FDA for children with autism spectrum disorder. It can be prescribed for children between 5 and 16 years old to help with irritability.

Some doctors will prescribe other drugs in certain cases, including selective serotonin reuptake inhibitors (SSRIs), anti-anxiety medications, or stimulants, but they’re not FDA-approved for autism spectrum disorder.

Talk with your child’s doctor about whether there are medicines that treat their symptoms.

Nutrition

Experts don’t recommend any specific diets for children with autism spectrum disorder, but getting proper nutrition is important. Sometimes kids with ASD restrict their food or parents try eliminating things like gluten to see if it helps symptoms improve.

However, there is no research that has proven that removing gluten or casein (proteins in wheat and milk products) from their diet is a helpful treatment for ASD, and limiting foods like dairy can prevent proper bone development.

Kids with autism spectrum disorder tend to have thinner bones than kids without it, so bone-building foods are important. You might want to work with a nutritionist or registered dietitian to develop a healthy eating plan.

How Parents of Children With Autism Can Strengthen Their Relationship

Parents with a solid co-parenting relationship are less stressed and more hopeful.

Parents, in general, are under a significant amount of pressure during the coronavirus pandemic. Those who have been able to switch to long-term remote work arrangements are simultaneously helping their children stay engaged with online learning while schools remain closed, and some are also caring for aging parents or children with special needs.

For parents of children with autism, a new study finds that they’re facing a high degree of stress because of the isolation, disruption of children’s therapy services and respite care, and worry about finances and the risk of illness for their children and themselves.

What can parents do to alleviate stress during a time when public health guidance requires physical distancing? Research suggests that co-parenting—when two or more adults (parents, grandparents, family members, friends) work together to share caregiving responsibilities—can be an important source of support for parents of children with autism. This is true in “normal” times, but particularly now when many families are hunkered down at home with only each other to lean on.

In a 2015 study, over 150 mothers and fathers of children with autism in Australia completed questionnaires about several aspects of their parenting experience. They rated their co-parenting—how well they communicated and worked as a team, and how much they respected their partner’s caregiving commitment and judgment. Parents also answered questions about their stress and their confidence in their parenting role. 

The findings? Parents who had better co-parenting relationships also tended to have less parenting stress. “The most important source of parenting support for many parents is the support they receive from their parenting partnership,” explain researcher Chris May and his colleagues. Parents of children with autism may feel more isolated from friends and family, which makes co-parenting support from partners even more significant.

In a 2017 study, May and his colleagues explored why a sense of confidence and competence in your co-parenting might be helpful. To capture a range of perspectives, they interviewed 11 cohabiting couples—mothers and fathers—who reported experiencing either relatively low or high stress.

The researchers explored how parents adapted as they started to understand that their child had autism, how they experienced a sense of partnership in their parenting, and how they expected their partnership would influence their child’s development. For example, they asked parents questions like “How important is your parenting relationship with [your partner] likely to be in determining [your child’s] progress?,” “How do you keep your parenting relationship working?,” and “Has anybody ever talked to you about parenting teamwork in relation
to parenting a child with [autism]?”

The study found that parents who felt greater confidence in their co-parenting tended to be better able to cope with learning of their child’s diagnosis, have stronger motivation to do what they could for their child, and have greater hope for their child’s development.

“A sense of solidarity was experienced by parents when they felt they were on a ‘shared journey’ that involved appreciation, camaraderie, and compromise,” explain May and his colleagues. “This sense of ‘both trying to head in the same direction’ was an important factor in . . . linking a sense of purpose and shared direction to their ability to keep their relationship working.”

How to strengthen your co-parenting

How can parents of children with autism strengthen their co-parenting relationship? Psychologist Linda Raffaele Mendez and her colleagues designed a co-parenting training program that aimed to promote resilience in families of children with autism. In a recent study, they evaluated their four-week Together We Are Stronger group program with seven couples in the United States. According to their preliminary findings, parents who participated in the program had more cohesion in their relationship, better co-parenting, and more hope at the end of the program compared to the start.

Here are some recommendations from the program to help parents be stronger together.

1. Reflect on your family history and values. Co-parents can work together to think about what exactly your family values are and how they are tied to your personal and family history. Once you’ve identified your shared values, you can become better aware of what you want to instill in your children and how you will work together to do that. This reflection can consider your children’s special needs so you can adapt your approach for your children to best embrace these values.

For example, for families who value experiencing shared joy and laughter, you may reflect on what delights each family member and how you savor, mark, and remember these moments together. For families who value love, you can reflect on how receiving love at different times, in different ways, and from different people has sustained you. You can also think together about how each of your different expressions of love grow in widening circles—for self, family, pets, friends, teachers, therapists, neighbors, community, humanity, and nature.

You can also create a family time capsule with mementos and symbols of your most cherished values that will maintain the connection between you and your future family members. With a clear understanding of these values, co-parents can write a family mission statement as a way of summarizing this reflection and discussion.

2. Talk it out. Co-parents can practice actively listening for better communication and teamwork. You can look for opportunities to use confirmation communication, which can help your co-parent feel more valued. This includes saying something accepting or positive to your co-parent, like “That was really brave of you,” or asking for more information so that you can understand their thoughts, feelings, or behavior better.

You can also try to avoid disconfirmation communication, which can make your co-parent feel devalued. For example, replying to them by dismissing, interrupting, ignoring, or saying something irrelevant or tangential can communicate rejection.

Co-parents can practice using “I” statements to communicate your personal needs. “I” statements are a tool to help make clear that you are expressing your perspective rather than blaming your partner. “You” statements like “You don’t help me take care of stuff around the house” can lead to defensiveness. In comparison, “I” statements like “I feel frustrated when I can’t get my work done, because I’m taking care of all these household chores” can help show that you’re owning your feelings and set the stage for collaborative problem solving.

Practice planning for and having uninterrupted “check in” times, which last 10–20 minutes every day. Prepare an activity for your children during that time to minimize distractions.

3. Be there for each other. Recognize that working together as a team can reduce your overall stress. Share with each other what increases your stress levels, talk about what you need from one another, and make a plan to help reduce each other’s stress. For example, write down something that your co-parent could help you with and put it on the refrigerator. Simply doing one thing your partner needs can go a long way in helping them manage stress.

4. Use optimism and humor. Notice the tone of your thoughts on a weekly basis. Do they tend to be more optimistic or pessimistic? During your check-in times, talk to each other about how you might shift your perspectives if they tend to be more pessimistic. Invite your co-parent to help you find ways to do that. Also, recognize how humor can help relieve stress. When was the last time you laughed together or made light of a difficult situation?

Of course, parenting children with autism comes with many gifts in addition to these challenges. Parents can have many positive experiences related to caregiving, like a growth in their appreciation for family and family closeness, appreciation for new opportunities and knowledge-building, and understanding about differences, abilities, diversity, and community. It’s not surprising that parents of children with autism who feel less stress tend to have more positive parenting experiences.

When parents practice strengthening their co-parenting relationship, the positive effects can cascade over to all members of the family, including their children.

Helping Your Child with Autism Thrive

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.

Closeup of boy wearing headphones

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.

Helping your child with autism thrive tip 1: Provide structure and safety

The Positives of Autism - Autism Awareness

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

Challenging behaviour & autism: 3-18 years | Raising Children Network

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 tantrumIt’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.

[Read: Autism Behavior Problems]

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 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.

[Read: Autism Treatments, Therapies, and Interventions].

Tip 4: Find help and support

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.

[Read: Respite Care]

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.

What Are the Symptoms of Autism?

Early signs of autism | Raising Children Network

Autism spectrum disorder (ASD) can look different in different people. It’s a developmental disability that affects the way people communicate, behave, or interact with others. There’s no single cause for it, and symptoms can be very mild or very severe. 

Some children who are on the spectrum start showing signs as young as a few months old. Others seem to have normal development for the first few months or years of their lives and then they start showing symptoms.

But up to half of parents of children with ASD noticed issues by the time their child reached 12 months, and between 80% and 90% noticed problems by 2 years. Children with ASD will have symptoms throughout their lives, but it’s possible for them to get better as they get older.

The autism spectrum is very wide. Some people might have very noticeable issues, others might not. The common thread is differences in social skills, communication, and behavior compared with people who aren’t on the spectrum.

Social Skills

Social skills for autistic children | Raising Children Network

A child with ASD has a hard time interacting with others. Problems with social skills are some of the most common signs. They might want to have close relationships but not know how.

If your child is on the spectrum, they might show some social symptoms by the time they’re 8 to 10 months old. These may include any of the following:

  • They don’t respond to their name by their first birthday.
  • Playing, sharing, or talking with other people don’t interest them.
  • They prefer to be alone.
  • They avoid or reject physical contact.
  • They avoid eye contact.
  • When they’re upset, they don’t like to be comforted.
  • They don’t understand emotions — their own or others’.
  • They may not stretch out their arms to be picked up or guided with walking.

Communication

Is Communication Just About Speech? - Friendship Circle - Special Needs  Blog : Friendship Circle — Special Needs Blog

About 40% of kids with autism spectrum disorders don’t talk at all, and between 25% and 30% develop some language skills during infancy but then lose them later. Some children with ASD start talking later in life.

Most have some problems with communication, including these:

  • Delayed speech and language skills
  • Flat, robotic speaking voice, or singsong voice
  • Echolalia (repeating the same phrase over and over)
  • Problems with pronouns (saying “you” instead of “I,” for example)
  • Not using or rarely using common gestures (pointing or waving), and not responding to them
  • Inability to stay on topic when talking or answering questions
  • Not recognizing sarcasm or joking

Patterns of Behavior

Children with ASD also act in ways that seem unusual or have interests that aren’t typical. Examples of this can include:

  • Repetitive behaviors like hand-flapping, rocking, jumping, or twirling
  • Constant moving (pacing) and “hyper” behavior
  • Fixations on certain activities or objects
  • Specific routines or rituals (and getting upset when a routine is changed, even slightly)
  • Extreme sensitivity to touch, light, and sound
  • Not taking part in “make-believe” play or imitating others’ behaviors
  • Fussy eating habits
  • Lack of coordination, clumsiness
  • Impulsiveness (acting without thinking)
  • Aggressive behavior, both with self and others
  • Short attention span

Spotting Signs and Symptoms

The earlier treatment for autism spectrum disorder begins, the more like it is to be effective. That’s why knowing how to identify the signs and symptoms is so important.

Make an appointment with your child’s pediatrician if they don’t meet these specific developmental milestones, or if they meet but lose them later on:

  • Smiles by 6 months
  • Imitates facial expressions or sounds by 9 months
  • Coos or babbles by 12 months
  • Gestures (points or waves) by 14 months
  • Speaks with single words by 16 months and uses phrases of two words or more by 24 months
  • Plays pretend or “make-believe” by 18 months

Stress and stress management in families with autistic children

The hardships of families with autistic children - Tehran Times

About stress in families with autistic children

Stress is a normal part of life, something that most people and most families experience.

But families with autistic children can experience more stress than other families. For example, they might feel stressed because they:

  • are coming to terms with a diagnosis and what it means for their child
  • are finding it hard to manage daily life with an autistic child
  • are having trouble managing challenging behaviour in their autistic child
  • 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

Autism Spectrum Disorder Checklist | Otsimo

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

16 Simple Ways to Relieve Stress and Anxiety

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.

When your stress is under control and you’re feeling well as a parent, you’re better able to navigate the challenges of family life. This helps your children grow, develop and thrive.

Tips for Parenting a Child on the Autism Spectrum

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.

1. 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.

2. 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.

3. 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.

4. 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.

5. 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 them used to the world around them.

6. 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.

7. Look into respite care. This is when another caregiver looks after your child 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.

Why Autism Parenting Is Olympic Level

Parenting a special needs child can be very challenging (also, ice can be very cold and water can be very wet). I have written about how lucky I feel that my son is exactly the way he is. But I feel like the challenges need to also be mentioned – it is not all hugs and tickles.

Here are some differences between parenting a special needs child and parenting a neurotypical one.

You Need Olympic Level Parenting Skills

olympic-level-parenting

There are many parenting styles. There are helicopter parents and free-range parents. There are easy-going parents and strict parents. A lot of this is cultural and generational, and the long-term outcomes don’t seem to change very much despite all the controversies involved.

My parents never let me play computer games, rarely let me watch TV, and took me to two different tutors every week. I rarely spent time with my friends outside school because I was very busy studying, and so were they. I was an only child for a long time and raised to do a lot of the housework – I even often made my mum’s lunch for work. There was also a lot of pressure about my school work – if I didn’t come in the top 10 for something, my mum would tease me for being a C-grade student. If I did come in the top ten, my parents would remind me to maintain it next time.

Both my parents always worked full time and I was a latch-key kid. The first time my parents left me home alone for a few hours was when I was three years old. And yet I survived.

I got a full scholarship, kept it, did well in the HSC, had a great group of friends throughout high school and beyond, and am totally ok now. I did not grow up cold or distant and have not been scarred by the experience of having a working mum. I was actually always very close to my mum and we were good friends until she passed away ten years ago.

My husband’s upbringing was the exact opposite of mine. He was one of four siblings with a mum that worked part-time and a large family. I had three cousins in total, and mostly they were in other countries. He had about 60 and he saw them every weekend.

His mum drove him to school and to the sport. He did a lot of sport, played a lot of video games, and watched a lot of TVs. On the weekends and after sport he talked trash with his siblings and ‘hung out. He had no tutors and didn’t worry too much about all that because of how naturally bright he was. He wasn’t pushed to study at all (by my standards), but went to a good school and had a natural drive that meant he just did it anyway, especially as he got older.

He also grew up just fine, got into his chosen course at uni, and has a wonderful relationship with his family and great friends.

He ended up working at a parallel street to me in the city, about 200m away from me. We ended up, literally, in the same place.

So no matter how much our parents would strongly disagree with each other’s parenting styles (and they definitely would), it made no difference. We both grew up fine. I’m sure they pat themselves on the back for certain choices they made and regret other choices, but odds are it would have made very little difference in the long run.

With a child on the spectrum, the difference can be huge!

The outcomes are wildly different depending on when ASD is diagnosed, what early intervention you use, how much of it you do, and how much parents are involved. The starting point is important too of course, and you can’t control that, but what you do with your child can make an enormous difference, much bigger than in a typical one. That’s why we always feel so much pressure to be perfect and get everything right.

It’s much more expensive

money-running-away

I am scared to look at my therapy bills, but I’m pretty sure by the end of this year they will be in the five figures. Just for one year. Well into the five figures. Swimming in five figures and coming halfway to the six figures mark actually. And that’s not even counting the fact that I have not been able to work so that I can both participate in his therapy and oversee it.

Sigh, my pretty, pretty money. Think how many Jimmy Choos I could have bought with that? Or more likely, how many mortgage repayments I could have made…

I know that in the long run, this will be a great investment and that of course, my son’s well-being trumps any kind of expenditure. I will mortgage five houses if I need to (I don’t have five houses, but I’m willing to mortgage other people’s houses if anyone is offering). I will sell a kidney – yes that’s my one you saw on eBay. Because in the end, it will be the difference between my child spending the rest of his life staring at his fingers and being able to go to a normal school, graduate high school, and get a job.

Sure, the government helps with bills – but it’s like a drop of rain in the Sahara Desert – here and gone within three seconds. The NDIS will contribute more, once it comes in (supposedly this year in my suburb, but I’m not holding my breath). But the bulk of the financial burden will still be on our family.

We are helicopter parents on steroids

helicopter-parent

I have noticed that my friends and family fall into two main parenting camps – the ones whose lives revolve around their children, and the ones who make their children fit around them. The first ones will go to dinner early because their kids need to, and will be home in time for bath and bed. The second type will go to dinner when they feel hungry and if their kid falls asleep on their lap at the table, with no bath or pajamas, that’s fine.

As an autistic parent, you become so obsessed with a routine that you make Sheldon Cooper look easy-going. Our friends and family probably all think we’re obsessing about nothing. When it’s time for Michael’s nap, we just don’t leave the house. If we have to, we look for an absolutely quiet location with no light and with no small children in a 2km radius. We are home for bath time, no matter what. If the world is ending and there is a zombie apocalypse at roughly 7.30 pm, you will still find us giving our son a bath and giving him his melatonin.

We also never let him out of our sight. While everyone else is relaxing at the playground watching their kids run around, we are never more than 2m away from our kid. This is because he doesn’t run around us so much as he runs away. And onto the road. And wants to explore what a car looks like when it’s moving quickly towards him.

Why are we like this? Because if we aren’t, our world falls apart. The consequences are worse than a zombie apocalypse – they are roughly on a par with Mt Vesuvius erupting on our heads, with a side of the 1931 China floods. There are meltdowns, therapy is thrown out of whack and our son runs around the house so tired he bangs his head on the walls.

We can’t relax, ever

tired-parent-stock

Any kind of parenting is exhausting. Your little heart is running around outside your body and you are aware of it 24/7 – you know when it is sad, hurt, and you are always aware of how vulnerable it is. But with a typical child, this heart grows and becomes tougher. It learns not to run into the road, it learns how to talk and communicate its needs, what to do if it is hurt, how to brush its teeth. Eventually, at around school age, your little one becomes so independent – my parents told me when I was five they used to sleep in until 10 on weekends because I would just get up and start reading.

An autistic parent does not get to relax. We can’t just ask someone to watch our child, because they will have many special needs and it is practically impossible for someone that isn’t with them at least a few times a week, to know what they want. They often can’t talk, or understand spoken language. My little one is two and a half and still gets confused with simple commands like ‘turn around, ‘point’ or ‘wave’.

If I leave him with someone I already know even before I do it, what it will look like. The person will make demands of Michael that he just can’t do, then they will insist (I know everyone thinks I am just not firm enough with him, that he disobeys me on purpose) and he will cry. They will do things differently and he will not be able to explain how he wants them done.

Eventually, he will grow up and mature, especially with therapy. But it will take him a much longer time and will take much more work. When he was 29 months old he was assessed as being developmentally a 14 month old. This is a big average – his cognitive skills were those of an 18-month-old, his language skills those of a 6-month-old. With therapy, these numbers will increase, but it is a big unknown whether it will ever quite get to the level of his peers. What is certain is that he will struggle, and almost definitely be bullied and excluded. As his parent, it is my job to work on his therapy every moment of the day so that when the time comes, he will be as prepared for life as possible.

If you criticize us, be afraid

stock-vector-cartoon-ninja-action-illustrations-224202709

Have you seen House of Cards? If you haven’t (and I strongly recommend it) there’s a line that I love – it’s something like ‘if they won’t’ elect us out of love, let them elect us out of fear’. This is how I approach my interactions with other people on the subject of parenting. I am friendly. I like it when people like me, and I like making friends. But if they criticize me or don’t like my choices for some reason, and are stupid enough to let me know, then they should be afraid. Very, very afraid. If they don’t respect my choices out of ‘love’ they will have to respect them out of fear.

We spend hours every week researching the best school for our child, the best therapy, the best approach to each individual problem. We then try them all out carefully, trying to ascertain which will work best on our child. How much of what we say does he understand? How much can we push him out of his comfort zone? What does he enjoy doing this week? What will he enjoy doing if we encourage him? How much crying is ok? These are all things we consider very carefully and try to balance about five thousand considerations in every decision.

We have to be creative, patient, and have the energy levels of a cheetah.

To a normal parent, our decision-making will look like over-thinking at best and insanity at worst. Autism is sometimes hard to see, and it can look like our kids are just spoilt. Michael whinges whenever a kid comes up to him and I have had people tell me to just take him out more, that he is not used to being around others, and all we have to do to ‘fix it is take him to the beach more.

I have had so many people suggest that our entire problem with Michael is that he doesn’t go enough to playgroup or daycare. I am surprised that I have not punched anyone to this day.

So before you criticize our decisions or decide to ignore our instructions, just remember how hard we work and maybe give a little pause? If that doesn’t work think about how close we are to breaking point every day and be afraid.