The Impact of Autism on the Family
I was talking with a friend who was eager to learn more about autism. She had done some searching online but she couldn’t find much about the impact of autism on the family.
And she was surprised.
She said something that struck a chord with me – something that those of us parents with children (young children, teens and adult children) on the spectrum intuitively ‘get’ because we live and breathe it each day – but something that isn’t talked about much outside of our close-knit circles.
‘I don’t get it,’ she said. ‘Why isn’t there more information out there?’
The amount of stress a family goes through when a loved one has autism is significant.
But it doesn’t stop at just stress.
‘So if the world doesn’t understand what the entire family goes through, they can’t possibly understand what the person with autism is going through, right?’ she continued.
Absolutely, I thought.
She was just starting to understand at a new level.
Read more below…
In This Article
The Impact of Autism on the Family
by Jeanne Beard
Autism Has A Compounding Effect
Autism isn’t a one person-one effect type of situation.
Autism impacts the entire family.
And it does so not only while the individual with autism is a young child or teenager but for their entire life.
‘Yes,’ I shared. ‘The impact of autism builds and expands. Like the pebble in the pond, it has a ripple effect that compounds and grows as it progresses. First one person in the family is impacted, then everyone in the family is affected in some ways, and ultimately autism impacts almost every area of the families life. This expansion is just one of the challenges of autism.’
That compounding effect too often takes the form of a downward spiral.
She looked concerned.
‘What do parents do? I’ve heard of resources for kids with autism, but I looked and there’s not a lot of helpful stuff for when the child is nearing adulthood or for the parents. How does the family cope with it?’ she asked.
Those were great questions.
These are the kind of questions that I wished were asked more often.
Because when someone starts to understand what is involved with a diagnosis of autism – how it touches every person in the family in just about every area of their life, and can do so for a lifetime – it unveils just how important seeing the autism ‘difference’ differently really is.
And that sparks questions.
Autism touches the entire family
Truth is, there are some things available on how autism impacts the family. But a lot of the suggestions provided are behavioral fixes, and don’t truly address the autism, nor do they help parents re-frame how they see or think about autism.
Even the health care profession lacks sufficient ways to help the family create a different framework on how to experience autism.
Because, after all, it’s not where the focus tends to be.
The focus tends to be on the individual with autism.
Yet autism touches the entire family.
But too often, the parents and siblings of a person with autism are silent sufferers. And more often than not, parents and siblings are forgotten when society thinks about autism.
That only compounds the impact felt.
My friend and I kept talking.
‘Many of the clients who come to us [meaning The National Autism Academy] are in the midst of experiencing a downward spiral – where things feel like they are falling apart permanently and there is little time or energy for anything other than the autism.‘ I started.
‘What does that mean for their day-to-day life?’ she asked.
Another great question.
‘That means that every family member – the person with autism, the parents and the siblings – ‘ I continued, ‘are at risk for experiencing a constellation of chronic problems – from stress to health problems to financial problems to isolation and more.’
In fact, parents of a child on the spectrum are much more likely to experience lasting stress, depression, and anxiety than their counterparts. The same is true for siblings.
But it doesn’t stop there.
Avoiding the downward spiral
Without a framework to understand the autism differently and the proper tools to create effective change, every single member of the family – the child (whether a small child, teen, or young adult) with autism, the parents and siblings – are at risk of suffering these issues.
And it’s not just mental health issues like stress, depression, and anxiety. According to information shared by the National Institute of Health, the family of an individual with autism is also more likely to suffer health consequences.
But the stress alone is such a common experience that it leads a second group of clients to reach out to us.
‘Another group of parents come to us. They’re not spiraling downward yet, but after crisis after crisis they see where things are heading. And they want a better outcome for the entire family.’ I shared.
‘They’re seeing future difficulties for the individual with autism?’ my friend asked.
‘Not only the difficulties ahead for their child with autism but for the entire family. They feel the tensions rising in the family. They experience the dwindling time, energy and money. They become aware that if not done right, other siblings could become resentful or struggle with making friends out of concern for the behaviors that surface for the child on the spectrum, or feel resentful that the family revolves around the child with special needs. But instead of heading into a downward spiral, these families commit to being proactive – to doing something about it.’ I added.
‘So, what do they do?’ my friend asked.
‘They come to us to get ahead of it, to find a way to help the individual with autism thrive but also keep everyone in the family thriving as much as possible too.’ I said.
‘Oh, so that’s why you have a website – to give information to families of children with autism.’ she added.
She was partly right.
The website is to provide some information. But that’s not all of it.
– so it also needs to be customized .‘Some parents sign up for our course and discussion experiences. Others sign up for our live training and discussion programs. And still others who are not in a position to invest in the courses or programs get our free newsletters.’ I shared.
‘Wow,’ she said. ‘Courses, trainings, discussions – it seems like there’s so much to learn.’
‘That’s why we deliver it the way we do.’ I said. “Different strokes for different folks.’
‘What do you mean?’ my friend asked.
‘Well … one thing is that parents of an individual on the spectrum are already time-burdened. They don’t have a lot of extra time floating around. So they need something that is effective and takes effect quickly.’ I explained.
‘Like a book?’ she asked.
‘Sure, a book can have great information in it. But often that’s a starting place and not an ending place.’ I shared.
‘Why isn’t it enough?’ she asked.
‘Because a book or a course can show some different steps to take – and those can create a great foundation,’ I started, ‘but they’re not customized to what’s going on in a particular family.’
For parents who are time short, they need something quick. But they also need something that applies to their particular circumstances – and sometimes that needs to be customized.
They need something more custom-fitted to work in their family dynamic.
So while a book or a course provides a foundation, its best when it doesn’t stop there.
Most families benefit from the foundation. But they also benefit from a customized solution made to work for their situation – the ages of those involved, the family dynamics, the goals – everything.
Because autism is not one-size-fits-all.
Partnering with parents in a proven training process
While passive learning – like what happens with books and self-guided courses – feels great, reading or digesting a course alone for most people doesn’t provide the emotional support, or get the results like working together on a live call.
Studies reveal that parents with a child on the spectrum – whether a young child, teen or young adult – get far more out of a program – measured in improving parent abilities and less stress – when they get to partner in the ‘training.’
That’s why we put together a process that works while encouraging parents to partner with us. That’s because parents achieve better outcomes with less stress if they can implement a 5 step process:
learn a new technique, tactic, strategy, mental model or framework
practice or mirror it back with input while exchanging feedback
try it in the family setting in their ‘real life’ situation
report back later to the ‘teacher’ to share how it worked
work with the ‘teacher’ to find ways to custom fine-tune it
Using these steps in our trainings, parents get to partner in the process while getting a custom-fitted plan for their situation.
In addition, they can share with others on group calls who know what they’re going through.
That’s why The National Autism Academy often uses this formula – it’s crazy effective and helps parents feel less isolated, all while they’re getting palpable results!
I knew from the hundreds of conversations I had with parents that they hadn’t been able to find other places that met their needs and could guide them through the intricacies of different family experiences.
‘We encourage parents to talk about their experience on our live calls – what worked, what they want to tweak, how to modify strategies and approaches for their specific family situation. Every family is different so while some core things are true, parents benefit the most from being able to learn, practice it, go home and try it and then come back and get insights right then and there.’ I continued.
To make a real difference, parents can lean into a course or a book as a foundation or a checkpoint.
But they also need to be able to hop on a call and grab what to do quickly. Go implement it. And then come back and get live feedback so they can make adjustments as needed.
It makes such a big difference in learning and implementation when you have this level of support.
‘It seems like autism doesn’t just require parenting. It requires parenting, resiliency and stress management coupled with a willingness to test and tweak. Parents need an autism coach!’ My friend’s understanding was growing.
Now I knew she was digging in deeper.
Speaking from experience
‘Autism commands a nearly constant focus,’ I added. ‘It leaves little time or energy for other things. Unless you have a framework and process that gets you to a different level, it can wear down every single member of the family. And the long-term cost of that isn’t just money. It’s missed opportunity. It’s loss of special memories. It’s decisions that are regretted. It’s lives that are forever altered.’
I wasn’t speaking only from the books I had read, the experts I had interviewed or even just from my own personal experience.
I have been honored with spending a lot of time talking with hundreds of parents in my role at The National Autism Academy and we share these common experiences.
That’s how I know what families go through. I’ve talked with them. I’ve listened to them. And I’ve worked with them. I’ve also lived through it myself.
The parenting-related stress is significant.
On top of that, I have spoken with experts in autism and they report hearing about similar experiences with their patients and clients.
Beyond that, here at National Autism Academy, we also have the good fortune of having a resource in Dr. Timothy Wahlberg. Dr. Wahlberg has worked in a clinical, therapeutic setting for 25 years helping people on the spectrum and their families, and he shares his insights with us. The NAA’s goal is to create the same kind of success for our clients at home as he sees in his office.
All of this – the conversations, the expertise, the experience, the personal insights from working with families – act to solidify the reason behind developing a different way for parents to address the autism; an approach most people aren’t taught and precious few are aware of.
Dr. Timothy Wahlberg
Changing direction with a different framework
Getting a different framework is crucial for the success of the person with autism. It usually changes the direction their lives are heading.
And getting a different framework is also critical for every other member of the family. Without it, every single member of the family is at risk for suffering.
Because without a different way to address the autism, every member in the family can experience an increase in:
- health problems
- isolation and loneliness
- relationship struggles
- decreased family functioning
- vocational difficulties
when compared to their non-autism impacted counterparts.
Left unaddressed, the compounding impact of autism can create a negative spiraling affect. That negative spiral gains momentum as problems get bigger and bigger and tougher to resolve. When that happens it can increase the impact on every single person in the family.
What’s more …
How the family responds to and addresses all that goes along with having autism has a direct connection to how the person with autism experiences the autism and themselves.
So getting a different framework has the power to help everyone in the family.
Taking A Step Past Autism Awareness
As a society, we have grown in our awareness of autism. And through it, more people are aware of some basic information about autism.
Autism Awareness became a world-recognized event back in 2007. Its focus was to help more people worldwide understand and accept people with autism.
. It aAnd that was a great start.
Autism Awareness continues to be an important way to inform generations of people about autism and to introduce its effect on the person who has autism.
But even after 50 years since Autism Awareness started, awareness doesn’t mean that society appreciates how far- reaching the impact of autism is. It also doesn’t mean that the world has become more understanding or supportive.
In fact, awareness doesn’t even mean that society has grown more aware of how wide-spread and deep the impact of autism is on the family.
And awareness doesn’t begin to recognize the complexity that autism brings into life– everything from the social struggles and behavioral differences to the areas of impact on relationships, job flexibility, income and more.
Addressing the family’s experience of autism
My friend’s questions are just one example of someone who cares a lot about others but even with about 50 years after Autism Awareness became world-recognized, still did not have more than a basic understanding of the enormity of the impact or the complexity of the experience of life with autism.
Even today … too few know that autism often leaves an individual on the spectrum struggling to be understood, challenged to fit in and experiencing a life-long battle in a world that doesn’t appreciate the social, relational, functional and independence difficulties they may experience.
And the impact on the family – what each family member goes through – still remains part of the hidden ramifications of autism. Because most people have almost no clue about the impact autism has on the family.
And that benefits no one.
To be sure, our society has grown in some aspects of its autism awareness.
But it has a long way to go.
Because having an increased awareness hasn’t significantly changed how society addresses the family’s experience of autism.
Gaining a functional understanding
Still to this day, society in general lacks a functional understanding of what it means to have neuro processing differences – everything from sensory hyper-sensitivity to social connection difficulties to repetitive behaviors to differences in how single task versus multiple step actions are processed.
And the list goes on.
To a parent of a child on the spectrum, it is painful to know that your child is not understood. And that the world’s understanding doesn’t magically develop as the child grows into the teen years or becomes an adult.
But the lack of understanding doesn’t stop there.
The difficulty is compounded given that few people understand the implications of an autism diagnosis on the family.
Families with a member on the spectrum tend to have higher incidences of depression, more communication challenges and a deeper sense of isolation. The daily stress level of a home with autism is often so high, that the family doesn’t recognize the need to seek help until there is a life altering crisis – one that could change lives forever.
Let’s look at the three phases of impact and what families experience.
The Pre-Diagnosis Impact of Autism
‘How long after diagnosis does the family first start feeling the impact?’ my friend asked.
Although well meaning, she was mis-guided.
‘The impact of autism on the family doesn’t start after diagnosis,’ I said. It starts long before then. It’s the difficulty of living life with undiagnosed autism that makes a family seek a diagnosis.
It’s a common misperception and further highlights how little ‘awareness’ society in general has even after so many Autism Awareness campaigns.
When considering the impact of autism on the family, people tend to focus on the impact around the time of diagnosis. And no wonder – for many, it is a dramatic life-altering moment. Often, it’s the first time a family has a name for what is happening in their home.
But that ignores that it is not the diagnosis that is what ignites a changed way of being for the family.
The diagnosis confirms what the family has been experiencing all along – that the child is struggling because he/she is different than what society considers ‘norm’ and would benefit from help, although they probably still don’t understand how or why the child is different.
Because the time prior to diagnosis leaves an imprint too.
Early challenges of autism
Before learning what the diagnosis means, everyone – the child with autism, the parents, the siblings and any extended family – interacts with each other while holding the mistaken belief that the child is processing in what society would label as ’neuro normal’ when in fact the child has a very different processing system. That can leave the child feeling like there is something wrong with them rather than different about them. And children often interpret different as wrong or bad.
In addition, families – not knowing the diagnosis yet – presume that the behavior differences the child exhibits is because the child is willfully not co-operating, is acting out, is defiant, or otherwise does not want to behave. They assume that the behavior issues, quirks and meltdowns are related to poor parenting, or some character flaw, or a combination of both.
In other words, it is presumed that the child is intentionally acting out, or the parents are not parenting properly.
Sometimes before diagnosis, the family can hold a worry or concern over whether the child is reaching certain milestones at the ‘right time’ or in the ‘right way.’
That naturally leads to a focus on the child and the timing of meeting those milestones. That can result in lost time while looking at many other factors before defining autism. For example, parents may wonder if their child has a hearing or vision problem, if they have a learning disability, or just a low IQ to name a few.
Trying to understand what is happening with the child’s behaviors and close monitoring of milestones is one of the early challenges of autism. It means that many parents start experiencing great worry and fear, as well as changes in lifestyle well before the child is ever actually diagnosed.
For many, that means that parents take the child to one doctor after another, and one specialist after another, trying to figure out what is going on, often with little or no success.
There can be a ton of testing done and a lot of advice to ‘wait and see.’ There can also be mis-diagnoses and presumed diagnoses before anything definitive is reached.
The diagnostic process can be agonizingly slow. And the parenting-related stress in this ‘wait-and-see’ time can be excruciating.
It’s not uncommon for families to go through a long list of reading material or consult numerous medical professionals trying to find out what is going on and what to do about it before the answer is ever given.
And of course, several symptoms of autism are mimicked by other conditions, so there can be a lot of sifting and sorting of behaviors as time progresses – each one capable of lending a different conclusion.
The stress and anxiety of not knowing
‘Oh my gosh,’ my friend said. ‘That has to be so painful. It’s got to produce a lot of stress and anxiety for the parents.’
‘Yes,’ I said. ‘It does. And that can put even more stress on every relationship in the family.’
‘I’m surprised that families don’t fall apart with all of that going on,’ she continued.
‘Sadly, many do,’ I shared. “Just when families need more and more support and understanding, they often find people weighing in and telling them what they’re doing wrong.’
Studies have shown that parents with a child on the spectrum tend to experience more depression. And the severity of the depression often increases in proportion to the degree of impairment of the child.
And the stressors don’t stop there.
Some health care visits are made more complicated if the health care professionals aren’t fully versed in what happens with autism, when the child has a symptom or two that’s not on the common checklist of symptoms, or when the diagnosis is delivered without awareness of what it means for the family.
‘Too often, even health care providers tell parents that they are parenting wrong, not understanding that the child has autism.’ I added.
While the stress of not knowing what is going with your child – and of being told it is your parenting – is incredibly hard, it’s not the only pre-diagnosis stressor.
Financial, time, and energy expenses
With each of those visits there is an additional expense.
And that expense is more than just the cost of deductibles and out-of-pocket medical care.
There is a ton of time devoted by most families as they try to get an accurate diagnosis – time on the phone trying to get an appointment, time driving to and from the appointment, time actually at the appointment and time getting in for follow-up testing or trying to figure out what to do next when no answer is forthcoming.
Many parents can struggle with navigating how to hold onto jobs while trying to juggle these extra parenting demands. Others feel the complications of just one parent carrying the brunt of going to appointments. And still others have a hard time getting consistent, stable caregivers who are able to handle the behavioral and processing differences in their child. Even though the diagnosis hasn’t been given yet, the behaviors are still there!
And naturally, all of the time, energy, and financial outlay can leave people tired, stressed, anxious, frustrated and depressed. On top of that, for many there is fear – fear of not being a good parent, fear of not finding out how to help their child, fear that no one is providing an answer that actually helps. Fear of what will happen in the future.
On top of that, for nearly every parent there is a cycle of hope that leads to repeated disappointment.
Just to be clear, pursuing a proper diagnosis is key. It is what opens the door to a world of services the child with autism needs.
But it isn’t easy.
And Like a soldier in combat
My friend continued, ‘It seems like parents would have to be unbelievably exhausted. There’s so much going on all at once.’
‘Oh my gosh yes,’ I said, perhaps a little too loudly. ‘It can leave each family member – including siblings – feeling drained, out of control, marginalized and numb. Because you’re either going to the appointments, stressing out at home or at the office over what the result will be, or worrying about what the future holds or what to do next.’
I could tell she was really taking this in.
‘And remember,’ I pointed out, ‘This is on top of all of the differences in behavior that they have already been addressing.’
‘It’s like having a 24-hour non-stop stressor,’ she said.
‘Imagine if you had to go through that,’ I added. ‘And on top of that – some kids with autism have a lot of problems sleeping – so truly it can be a 24-hour experience.’
No wonder that the incidence of depression among moms is so high. Psychologists report that the stress level of moms with kids on the spectrum is comparable to that of a soldier in combat.
The focus on trying to gain an understanding of what is going on for the child is made even more challenging when well-meaning friends and family start weighing in on what they believe the issue is with the child.
Or when those same family and friends start comparing the child not yet diagnosed with autism to ‘normal’ children. And that comparison isn’t limited to the developmental years. It happens every step along the way – from young child through teenage years and into adulthood.
Armchair diagnoses rarely help someone who has been to numerous professionals, including doctors, trying to get useful answers.
And comparison can quickly feel like judgment.
Parenting isn’t the problem
Parents often report someone telling them that it is their parenting that is causing the problem – that they are too lenient, don’t discipline right or are letting the individual with autism get away with things.
In other words, many presume that the person with autism is aware of what they are doing and making a decision not to cooperate, and the parents are not responding properly!
And nothing is further from the truth.
People with autism are simply trying their best to navigate a world that works and thinks very differently than they do.
And they are trying to do it with a processing system that elevates sensory issues, can have delays or gaps in connecting thoughts, and aren’t able to easily apply learning in one area to another.
person with autismTelling a parent or an individual that their behavior is intentional – suggesting some type of moral defect – is painful and dangerous.
When this happens, everyone in the family has an experience of it. And a reaction to it.
It would be tempting here to write pages and pages about how hurtful and dangerous this type of ‘well-meaning’ advice is.
But what’s crucial for this article is to point out that in all of the scenarios, regardless of what is said or the reaction to it, it is normal for the person with autism’s behavior to become the primary focus.
In our ignorance, we believe that if we can “fix” the behavior, and make the individual act like everyone else, the problem is solved.
Maybe society’s problem is solved, but that doesn’t remove the pain and struggle for those on the spectrum, or the difficulty of watching someone you love suffer.
That only adds to the number of stressful life events that the family experiences due to the autism.
Because focusing on one family member’s behavior – which is understandable and necessary when autism is at the center of it – can put a roadblock in the relationship between the parents and among siblings.
As each parent tries to process their experience, their reaction and their understanding of what is happening prior to the diagnosis, it is common for tensions and concerns to arise. Parenting-related stress can be at its all time high here.
Differences in parenting styles come out, the impact of the financial stress surfaces and many families experience a breakdown in communication at the precise time when it would be most helpful for communication to improve.
The compounding impact of autism on the family
On top of those stressors, the focus on the child (who is yet undiagnosed) can leave other siblings feeling insignificant, marginalized or left out, and resentful.
Make no mistake – this is just one part of the stressful life events that siblings will also experience, not just parents. It can lead siblings to act out or express natural needs as they vie for attention. And it can leave over-taxed parents feeling like they can’t please anyone or are just simply bad parents – which is not true.
What’s more, the stress caused by the additional financial burden and the reduction in time for fun and leisure activities can weigh on everyone.
If there is a disagreement among the parents about the cause of the behaviors or the way to address them, it can also leave siblings who do not have autism feeling like they are caught in the middle of a family dispute.
Plus, siblings resent the special accommodations parents allow for their siblings with autism just to keep the peace in the household. The perceive it as a double standard what is unfair, when in reality the accommodations have developed out of the parent’s necessity to survive.
Any of these experiences exacerbates the compounding impact of autism on the family.
Through this, it is not uncommon for resentments and anger to be born.
In some families, siblings over-compensate by feeling like it is their responsibility to protect the child with autism – resulting in a type of child parenting behavior. This can show up at school where the sibling tries to protect the child with autism and with social occasions where the siblings’ peers come into contact with the child with autism.
With time, money, energy and patience in short supply, this can understandably lead parents and siblings to curtail their own social encounters.
This naturally leaves everyone to feel more alone and isolated.
But the impact doesn’t stop here. It continues as a diagnosis is revealed.
The Diagnosis Impact
‘With all that is experienced before an autism diagnosis, you’d think that there’s be some relief once the diagnosis is reached. But for many, there’s not.’ It seem like I was providing the very information my friend was looking for online when she starter her search and couldn’t find anything.
‘Doesn’t getting a diagnosis ease the worry?” she asked.
‘In some ways, yes,’ I shared. ‘And in other ways, no.’
The diagnosis furthers the compounding impact the family experiences for several reasons. Not only is there still the stigma to deal with, but also because, while giving some answers, it opens up so many more questions.
And that can unveil a path that at first appears to add even more stressful life events for the entire family.
‘Now the family knows what they’re dealing with in a very big picture kind of way. But that leads to more questions: What do they do now? How do they help? What does their child need? It can seem overwhelming.’
‘It’s almost like everyone in the family has to learn a new processing system, a new culture, new behavior patterns and a new language all at once.’ she commented.
‘Yes, it sure can feel a little like that. But unlike learning each of those things once and then being fluent in it,’ I explained, ‘it’s like you have to learn them with every new event or stage of life the person goes through. It feels like just when you have a rhythm and things are getting better, something changes!’
She slowly started nodding her head as the enormity of it sunk in.
Responding to the diagnosis
It is only natural that everyone will have a response to the diagnosis – whether it is relief that a diagnosis has finally been received or sadness over what the diagnosis is or both at the same time.
Almost always the parents experience a sense of loss and grief.
Those are perfectly normal and natural experiences. And they lead to predictable responses.
Sometimes, the realization that this is forever leads to anger, fear, frustration, disappointment, or confusion … just to name a few. Then there may be moments of hope that there IS something that can be done to improve life.
And all of that adds another layer of emotional complexity for each member of the family.
That’s because at the time of diagnosis, each person not only has to deal with their own response to the diagnosis, but also experience and process each family member’s response.
On top of that …
The expenses often skyrocket as more specialists are sought and multiple therapies are started to try to improve the life and future of the individual with autism. While the school system in the U.S. can provide some help, it typically is not enough.
That financial load becomes its own escalating series of stressful life events as parents try to shore up resources in a never-ending flood of medical costs, therapy costs, consultant costs (for such things as IEP’s) and care giver costs. Money that might be devoted to other purposes get streamlined to therapies, advocates for school and medical care.
Priorities shift by necessity.
And the parents feel the impact of this, often placing ever more stress on their relationship.
In addition, siblings feel the stress building in the home and the focus being given to the child with autism.
This can increase sibling anxiety, instill fear and even lead to resentment as their relationships seem to shift in response to the new family dynamic. With the change in financial and time devotion and the needed attention to medical concerns elevated, whatever level of predictability they once knew is called into question.
And the impact for each family member doesn’t stop there.
An entire family’s experience
When extended family members learn of the diagnosis, they also have a response. Their voice can create a whole new level of emotional cacophony for the entire family!
All of that compounds the already existing stressful life events into something that can at times feel nearly intolerable and exhausting!
As if that’s not enough, the impact doesn’t stop there. In fact, it’s just beginning.
The impact of autism on the family can quickly lead to a downward spiral where no one in the family feels they are getting their needs met, no matter how hard the parents try.
Because what’s clear is …
The way the family experiences autism – how each person in the family reacts to it, works with or against it, and sees it – directs their experience both in the short term and the long run.
That’s not just something visited upon the individual with autism.
It’s an entire family’s experience.
Giving support and understanding
Without the right support … the person carrying the autism diagnosis, the family impacted by the autism and each of the family members who directly or indirectly have their lives altered by it – suffer.
And I am not talking only about the demands of treatment, therapy, and school. Make no mistake – those are significant.
But often equally significant is a society that lacks a fundamental working knowledge or understanding of what having autism means and how it places financial, emotional and time stress on the entire family.
Because when society expects that a family with a child on the spectrum is only experiencing what everyone else experiences, that society is wrong.
‘I didn’t realize,’ my friend shared, in a very quiet voice, ‘not understanding what they’re going through can make them feel even more isolated. That’s got to add another layer of stress to an already over-stressed family.’
‘When we’re not understood,’ I shared, ‘when so few know what we are going through – it can leave family members feeling alone, over-looked, marginalized, isolated, mis-understood, cut-off from social engagements, anxious and without sufficient ability to further their individual goals and desires.’
‘It’s so hard,’ she was clearly feeling the enormity of it. ‘It’s got to feel horrible that nobody gets it.’
‘It’s hard. And it adds to the pressure that is going on with the entire family who already feel like the autism is commanding all of their attention and resources.’
‘If that wasn’t bad enough,’ I added, ‘for a family, it can feel like there is no end in sight.’
The After-Diagnosis Impact
Once a diagnosis has been reached, there can be a significant amount of time and energy outlay as therapies and IEP school meetings are secured.
Not only is there frequently a stream of appointments – doctor’s appointments, physical therapy appointments, occupational therapy appointments, speech, and school appointments – but there can be a very protracted and difficult search for information.
Because when a diagnosis is given, there usually isn’t time for the health care practitioner to explain the in’s and out’s of what to expect. That is, IF they know themselves!
‘Wait,’ my friend said, clearly upset. ‘You mean the parents are left to figure that out for themselves?”
‘Well, think about it. How much time is usually scheduled for an appointment?‘ I was leaning into my experience and that of hundreds of parents I had spoken to who had a child on the spectrum.
‘Ten or fifteen minutes max usually,’ she responded. ‘The health care system doesn’t really provide for that kind of time.’
And even if the diagnostician has some time, they probably don’t have the knowledge and expertise the family needs to make changes at home.
My friend was realizing how complicated it all was.
And without someone to lean into who has been there before, it’s nearly impossible for parents to build a framework that helps the entire family as well the individual with autism.
Hit or miss process
Parenting becomes the hit or miss process of trial and error. That can make it easy for things to be missed.
Things like how to start preparing a child for changes in their routine so they don’t have a meltdown.
Or how to recognize ahead of time when things start to tax their child’s neuro system so they can head of a meltdown by moving to a quiet place … and then teaching the individual with autism to monitor those for themselves!
Or how to help the teenager or young adult do things they are not motivated to do, especially since motivation for a person with autism works differently than for those who do not have autism.
Without a framework, it is nearly impossible to navigate how to help the child with autism grow to become as independent as they can be in a world that doesn’t understand autism.
When you don’t know what to do, it’s very complicate to be able to show the child how to apply different experiences to different situations – like the subtle similarities and nuances to visiting family versus being out with friends, going to school versus holding a job, or responding to a parent versus responding to a police officer.
What’s clear is that, in addition to working with the individual, planning for a person with autism’s future puts another layer of financial, time and emotional stress on every member of the family.
Planning for the future
Time, energy and finances get devoted to both seeking solutions for today and determining what provisions need to be made for the future. Will the person with autism be able to live independently? Will there be any type of caregiver needed or accepted? What will their future look like?
And what needs to be done (no matter what level of independence the person can reach) to help them live as joyfully and productively as possible?
As the child grows up, life becomes more complex. As more and more social opportunities occur (birthday parties, school events, family get-togethers), there is an increased likelihood that the child with autism will feel more anxiety, might be subjected to being bullied, and will sometimes sense they are an outcast in a world that does not understand the things that can make a big difference for them.
‘Birthday parties?’ my friend asked.
‘Think about it,’ I invited. ‘The singing, the game playing, the lunch menu or even the cake, the opening presents – there is so much stimulation for every sense. And for kids on the spectrum, it can quickly send them into sensory overload.’
She was looking up, thinking about her experiences.
‘Most people throwing a party don’t even know how challenging it can be for someone on the spectrum.’ I was trying not to get too far into my Momma bear mindset!
‘The stimulation is taxing. The change in routine is taxing. The not having a quiet place to retreat to when it gets too much is taxing. The being given food that doesn’t look or taste like what they are used to is taxing.’ I could tell I was just getting started.
‘Ultimately, not being able to intuitively understand or easily process the nuances that the rest of us take for granted as an obvious part of the birthday ritual makes every situation so stressful because it feels like the first time they have encountered it.
‘No wonder it can lead to so much anxiety.’ My friend said.
‘Yes. Some psychologists feel that not knowing what is expected of them, is the number one cause of anxiety for individuals on the autism spectrum. And in spite of having experienced something similar before, they often don’t make the connection. And this is not their fault! It’s how their brain works; and when their neuro system is pushed to its limit, no wonder they have a meltdown. We would too.’ I have heard so many stories from parents describing this exact pattern.
Predictable can be preventable
When the totally predictable meltdown happens, people unfamiliar with what it’s like to have autism react by assuming it’s a behavior problem. They believe that the person with autism needs better discipline, stricter parenting, etc.
But predictable can be preventable.
Yet too often, instead of trying to learn about autism and then support the individual by removing some of the anxiety triggers or fear stimulators, society blames the parent for the person with autism’s perfectly predictable response.
‘With even a little more appreciation of what its like,’ she said, ‘we could make a lot easier for people on the spectrum.’
‘And their families,’ I added.
‘Imagine having to choose between keeping your child calm or going to an extended family member’s get together.’ I shared. ‘If you can’t have both, you end up cutting yourself and your family off from precious social interactions – like birthday parties – to protect your child with autism (and yourself) from everyone else’s autism ignorance. Or you go but then every family member is on high alert for what could happen because the host refuses to have chicken nuggets or allow your child to eat separately from everyone else.’
‘Oh my gosh,’ she exclaimed. ‘I just got it. We think the problem is that the child with autism is not acting a certain way. But that’s only one side of the coin. The other side is that those of us who don’t have autism don’t have enough of an understanding to help make it all work more easily.’
Recognizing the need to adapt
Many people in the neuro-typical world don’t learn enough about those who have neuro differences (like autism).
So the neuro-typical world doesn’t understand how to make even small accommodations to help families and kids with autism.
Yet who is in the best position to adapt – a child with a social disability or an adult who already knows how to navigate the world?
‘Wouldn’t it be a great start if the world would recognize the need and adapt just a little bit?’ I asked as more of a statement than a question. ‘Because it’s easy for people who don’t learn about autism to blame people who are trying their best to work around it. And that makes everything harder.’
I knew it wouldn’t ‘fix’ everything, but it would be refreshing to know someone was actually trying to understand what we parents go through. And it would be such a relief to know that there were people who made space for all of us to be welcome at the table no matter what our neuro-sensitivities were.
Because too often, misunderstandings occur when people who do not understand autism encounter behavior that they feel is different; they blame a moral or conscious thought process to that behavior when really it’s behavior driven by the unique understanding of the world with a different neuro-system.
When that happens, parents find themselves either doing a lot of explaining or avoiding social connection – for themselves and with their children.
Over time, the tendency is to just isolate.
Yet the isolation can feel crushing. For everyone in the family.
That’s just one reason it’s time to do ‘different’ differently.
The impact of critical comments
When parents do brave venturing out, they often experience being told directly or indirectly what they are doing is wrong in the way they are parenting.
They are told to set more boundaries or be more of a disciplinarian. Sometimes parents are told how these ‘well meaning’ individuals would parent differently.
Usually, the people telling parents of a child on the spectrum how to parent have little information about what is involved or how to help nurture the child. And this criticism can be demoralizing or devasting to the parent – especially one who is already working so hard!
And if they don’t know the fundamentals of how a brain with autism works or the ways autism impacts behaviors, it is impossible to offer sound advice.
This can leave the parents feeling judged, alone and frustrated with precious few people in their circle who really understand what it is like. Or worse – they can feel ashamed that those closest to them think they are bad parents.
This often furthers the desire to isolate.
Imagine what it feels like to be doing double time trying to make a difference with your child, and being told you are not doing enough! Parents don’t want to deal with ‘well-meaning’ others telling them what to do or judging how they are parenting. And that can lead to fewer outside-of-the home interactions.
And siblings also experience a loss – even if they are not aware of it – when social interactions with extended family, friends and friends of the parents are curtailed.
But the impact of autism on the family isn’t just about people outside of the home making comments.
Just when you get it all together…
In the home, attention and focus are often consumed by the autism.
The needs of family members often get lost when so much attention is focused on running to appointments, addressing autism behavior, twisting yourself into a pretzel trying to tiptoe through the day so that you don’t set off a meltdown, trying to plan for a child’s future or dealing with people’s reactions to the autism.
And with each age or change of experience the person with autism has, there is yet another impact on the family. Because each change is like a brand new experience for the child on the spectrum. With it, the family devotes attention and energy focused on helping the child move through. Sometimes it feels like just when you get it all together, it all flies apart again! It’s frustrating and exhausting.
As the child with autism grows and new experiences are added to the mix (switching classrooms, puberty, time away from home just to name a few, friends), the awareness that helping the child achieve independence becomes a new priority, and requires yet another shift in approach.
The complexity and stress of autism return full force when a parent begins to focus on preparing the child for life after high school.
Improving The Impact Of Autism On The Family
Families with a child on the spectrum are under an unbelievable amount of stress.
As their child ages, the parent’s financial, social, relational and health pressures don’t go away. In fact, for many they increase.
For every member of the family, without a different model and framework – the impact of that increasing stress can limit social experiences and choices. It can limit choices in relationships, choices in vocation, choices in education. It can also have a devastating emotional effect.
Having the right framework allows families to build bonds of warmth that are strong. It will ease stress and improve communication. It changes the perceptions and the experiences of all family members.
The right framework creates a shift from perceptions and experiences centered around managing the child with autism to perceptions and experiences of us (the entire family – including the child with autism) navigating the autism together.
It starts with acknowledging the impact of autism on every member of the family. Moving from Autism Awareness to Autism Appreciation is an area in which society needs to grow.
And getting educated about a framework that can be custom-fitted to each family’s different experiences can make a huge difference in the life of each family member.
Because the impact of autism on the family can improve. It just requires the right framework.
It’s why it’s time to start doing ‘different’ differently and to move from awareness to appreciation.
Answering Autism Family Questions
What is Autism Awareness?
Autism Awareness is a world-wide effort started in 2007 to increase awareness of the impact of autism on a person who has autism.
It is marked on April 7th of each year with Autism Awareness Day.
What is the impact of autism on the family?
The impact on every member of the family can be far reaching, complex and compounding.
It can include increased stressed, depression, isolation, impairment to vocational choices, financial repercussions and marginalization.
Family members can also experience frustration, a sense of being out of control, shame and constant judgment.
Do all families feel the impact of autism?
Yes. However, there are frameworks and mental models that can help reduce the full extent of the impact. In addition, the more individuals outside of the family understand what autism is, how it impacts behaviors and what a family goes through, the greater the likelihood that the family will feel a reduction in some aspects of the impact, especially the isolation.
Is autism a stressful life event for the family of a child with autism?
Yes. Many family members experience a constellation of predictable mental health and physical health struggles in response to the autism.