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.

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.

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.

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.

‘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.’

Yes. Exactly.

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.