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.
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 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.’
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.