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My child has been diagnosed with autism – now what?!?
Chances are if you are reading this, then this is exactly what you are thinking. Maybe you have just been told that your child is showing signs of ASD and needs testing, maybe you are halfway through the diagnosis process, or maybe you have had the ADOS and the other tests and you have been giving a diagnosis.
Wherever you are along this journey, it’s a “process” not just when it comes to tests and appointments and an exhausting amount of paperwork, it’s an emotional process too.
The 8 Signs Of Autism Grief
If you watch the video below, you’ll know that my daughter has just received a diagnosis of “Autism with high levels of symptomatology”. Even though, as you’ll learn in the video and in the posts linked below, this news should not have come as a surprise to me (partly because it’s been a long time coming and partly because I have already been through this with one of my sons), receiving this news still took its emotional toll.
Today I am sharing with you the 8 stages of autism grief as a parent.
These stages may not come in order
They may not come when you expect them. They may come when you first have an incline that your child has additional needs, or they may come after the final diagnosis. Heck, they may not hit until weeks later. Either way, these are the stages that you are likely to go through as a parent of a child diagnosed with autism.
I am sharing these stages today so that you can know that you are not alone and that it is perfectly natural to have these feelings.
Most importantly I am sharing so that you will know that you can and will get through this. Read on and I’ll explain how.
Make sure that you check out these other posts and videos which share our journey up until the point that this video was filmed.
Shock
This is generally the first stage of grief, but for me, it came at an unexpected point. I was not “shocked” when my son’s teacher said that I was right in believing that he needed ASD testing. I was not shocked when my daughter was being tested. No, the shock did not come until my daughter’s diagnosis meeting.
As you’ll see in the video, I went into that meeting expecting a diagnosis of “mild” or even as high as “moderate”. It was even possible in my mind that she would not have scored “highly” enough to qualify for a diagnosis.
When they said that she came out of the tests with “high” levels of autism, shock was my overwhelming emotion.
For the rest of the day, I was stunned and totally overwhelmed. I couldn’t talk about it. I could barely recall the details of what had been said to me in the meeting. I had been completely blindsided and not only was I not expecting that outcome, but I also was not expecting my reaction to it either. The shock meant that I was barely able to process what had happened.
Now if this is where you currently are, the “shocked” stage, know that you are unlikely to linger here long. I filmed the video around 24 hours after that meeting where they had broken the news to me. You’ll notice that by this point, I had regained the power of speech. The shock may not have completely dissipated, but it had certainly ebbed to a level where I was feeling more in control again.
Denial
Now I hung out in the “denial” portion of the autism grieving process for a period of several days. It was a few years ago when my son was still undiagnosed. I talk about this denial stage in the video below, so check that out or keep reading to hear more.
My son was 3 and had started school a month or so before. When he started, I had expressed my concerns about his ability to join in with the day to day classroom routine. I’d explained that at just turned 3 he was already able to read, but I had no idea how they’d get him to sit nicely with the other children I then made a flippant comment about being sure that he was somewhere on the spectrum.
Denial: It’s definitely not just a river in Egypt
A month or so after he’d started, his teacher came to me and told me that she thought I was right. She agreed that my son probably was on the spectrum and we needed to start the process of getting him assessed.
Yes, this is indeed when denial struck.
I spent countless hours consulting Doctor Google for any and all other conditions that could explain his characteristics and behaviour. I came to my own diagnosis; he he did not have ASD, he was simply gifted. Gifted children often exhibited similar traits, that was definitely it. This made much more sense.
Quite pleased with myself following my newly found skills as a medical detective, I took my findings and seemingly concrete evidence back to my son’s teacher.
She looked at me kindly and said softly, “No, you were right the first time”.
‘Twas then I realised that I’d been taking a mini-break in denial, entirely oblivious up until that point that I’d even been there.
From the way that my son’s teacher handled the situation with such tact, it was clear that this was not her first dealing with denial. I was not the first parent to holiday in denial. It is, in fact, a common place for parents of ASD children to go.
Now I’m not saying that you’ll take a trip to denial, remember that not every parent will experience every element of the autism grief. Still, in my experience, most parents go through most stages, so it’s likely you’ll visit denial at some point.
If, or when denial strikes, remember this
Natural a stage as this is, try not to linger here for long. While you are in denial, you are not helping your child.
If you are in denial when you should be getting your child referred for assessment, you are delaying the process and potentially putting them further and further back in an already long queue of children waiting for assessment.
If you are in denial too long after the diagnosis, you are not doing everything you can to put strategies in place to help your child with autism.
I was lucky.
My son’s teacher handled me well, snapped me out of my denial and got me back on track to doing what needed to be done – fight to get my son his assessment. My dabblings with denial didn’t hold up our journey to assessment or delay my son getting help. My hope is that if you are in denial, you have someone to gently guide you out of it too.
Anger
Anger is a stage of the autism grief that can hit at any time and be directed at anyone.
Many teachers report that anger is directed at them, from otherwise placid parents. These angry outbursts often occur immediately after that same teacher has spoken to them and brought up the fact that their child may have autism. I imagine these same parents have a great deal of denial at this stage too, but directing their anger at the “messenger” is so very common.
I have felt lots of anger along the road to diagnosis. I’ve been angry at the system for being so slow and clunky and not getting children assessed faster. I have been angry at people in my life, who before my son’s diagnosis suggested that I had “made him the way he was”.
I’ll admit though, the overwhelming anger has been directed at myself. I’ve been angry at myself (mixed with an unhealthy side of Mum guilt) for not seeing things sooner, for not acting faster, for not doing more and for not being better. I’m aware, even as I write this, how “silly” that may sound, but nonetheless, it’s how I have felt.
Bargaining
I have not lingered in the bargaining stage for as long as some of the other phases, yet I’ve been there for sure. During bargaining, parents may look for alternatives for what could be “wrong” (so I guess I was bargaining during my denial phase a little). They may endlessly Google for cases where autism has simply “gone away”, look for “miracle cures” or ways to “make it right”.
The truth is, autism is not something to be “cured”. We can deepen our understanding and help our ASD kids to flourish, but we will not change the diagnosis. Accepting this can be hard.
Depression
This one is a tough stage. Here parents feel utterly helpless, alone and like giving up.
I’ve dipped in and out of this phase numerous times over the years. Depression has struck when there has been yet another form and yet another mountain to climb. At times it has felt like it’s too hard and I just wasn’t as strong as I needed to be to help my children.
The good news? This stage, like the others, passes. I am strong enough to advocate for my kids, just as you are strong enough for yours, so don’t forget it.
Relief
This one is a bizzare phase and usually comes coupled with one of the others.
When the doctor gave me my son’s diagnosis, I cried. When another doctor gave me my daughter’s diagnosis, I cried again.
Why exactly was I crying?
Part of it was sadness that my children would have extra struggles to face and all I ever wanted was for my children to have happy and healthy lives. Yes, I now know that they will have happy and healthy lives regardless, but I’m just explaining that, in that moment, the sadness or “depression stage” made me cry.
But there was another reason that I was crying.
And that reason was relief.
It was relief that I was not going crazy and that it was not all in my head. Relief that my child was not going to slip through the net and go undiagnosed when they really needed a diagnosis. Relief that after months and months of forms and appointments and meetings and phone calls, we’d finally got somewhere. Relief that there was light at the end of the tunnel and that I could finally get my children the help that they needed.
This relief is not always easy to spot. As with all of the stages, relief often comes jumbled in with some other stages, but if you look for it, I’m sure it’ll be there somewhere.
Acceptance
When you first hear the”A” word, acceptance is probably not a stage that you can ever imagine reaching. The good news is, from one autism Mama to another, I can tell you right now that you too will reach acceptance. We all get there at our own pace and follow our own paths, but it’s so good when you arrive.
When you reach acceptance you really can begin breathing again. You can see your children for who they really are and step into being the best Mum that you can be for them.
Action
Once you get to acceptance, you can really be where your child needs you to be – the action phase. Here you can take the steps necessary to not only access the help that your child will need but to put things in place in your day to day lives to make things run smoothly.
Now I’m not saying that you have to get all the way to acceptance before you take action.
Heck, I was still lingering in the other stages while simultaneously making endless phone calls and filling in forms to get my children assessed.
Nor am I saying that once you reach acceptance, you will never take a day trip back to the other phases. Full disclosure, this may happen from time to time.
All I am saying is that distant as it may seem, you too will reach acceptance just like I finally did with my son. I’m nearly there with my daughter, I just need a little more time.
So if you’re not quite at acceptance yet…
I’m here to tell you that you can get there. Give yourself a break! This whole process can be hard. You’re doing great, just know you too will get there in time.
When you reach acceptance and have the strength to take action, you too will realise that your beautiful child is that same wonderful person, with or without a diagnosis.
Not getting your child a diagnosis if they need one would not make the autism go away, it would just mean that the challenges ahead would be harder for them to face.
All children face challenges. Some struggle with reading or writing, my children will just face different speed bumps. The good news is that now they each have their diagnosis, and I’m the best part of the way through the grief stages, I can finally help them thrive and be their happiest selves.
I hope that understanding these stages of autism grief makes them easier for you to face. Mist importantly, I hope that knowing there is light at the end of the tunnel helps to guide you through.
Love Rhi x
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