The worst thing that 1 #Autism parent can do to another

It’s one thing to be judged by someone who has no idea what they’re talking about and something entirely different to be judged by someone who should absolutely know better.

There are far too many people who still erroneously assume that their personal experience with Autism is reflective of everyone else’s.

Similar to the lady that commented on my poll question, claiming it was awful to ask such a question and that her life has only ever been enriched by her child with Autism.

Perhaps her life has only been enriched by Autism and she’s never been frustrated or overwhelmed. Maybe she’s just not comfortable admitting that she sometimes misses her life before Autism?

Who knows..but frankly, it doesn’t matter because here’s the problem.

Families deal with kids in various different places on the Autism Spectrum. Some kids are very high functioning (which doesn’t necessarily translate to easy), while others are very low functioning (which doesn’t necessarily translate to more difficult). Still, many others are somewhere in between.

For some families like mine, every day is a financial, emotional and physical struggle. The stress, exhaustion, sleep deprivation, responsibility, guilt and feeling of being completely overwhelmed is indescribable.

There are plenty of days where I don’t think I can muster the strength keep fighting. There are other days where I experience the happiest moments of my life and find the strength to get back up and move forward.

On the other hand, for a million different reasons, some families simply have it easier. Maybe their child is less impacted by Autism. Maybe they are in a better financial situation and while that doesn’t fix anything, it does open a great many doors that aren’t available to the rest of us. Maybe they’re just stronger. Maybe they just have an amazing support system in place.

The point that I’m trying to make is that I never assume that my life as an Autism Parent is any more or less challenging than anyone else’s.

When people reach out and tell me that they thought their life was hard until they read our story, I always respond the same way. I tell them that everything is relative and we all deal with things in different ways.

It’s important that we never shortchange ourselves by comparing how we feel we’re doing as parents to how we feel others are doing. Inevitably, we compare our weaknesses to someone else’s strengths and we will always lose.

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The truth is, my life may seem impossible to you but I may not be able to walk ten steps in your shoes if given the opportunity.

It’s so important to remember, everything is relative.

When we judge other Autism parents for speaking their personal truth, simply because it doesn’t line up with our own, we’re not only wrong, we’re setting Autism Awareness back. If we want the world to be more understanding and accepting of those touched by Autism, we have to first lead by example.

When you read The Autism Dad’s story you’re learning about how Autism impacts one particular family, mine.

It’s not meant to be representative of the Autism community as a whole. It’s my personal story and while you can gain invaluable insight and knowledge from my experience, I can gain just as much, if not more, from yours.

Don’t judge others because your experience has been different.

If Autism has been the best thing to ever happen to your life, more power to you. I’m happy for you, I really am. Please don’t dismiss the challenges that the rest of us face on a daily basis. For many of us, being an Autism parent is the most challenging thing we’ve ever had to take on.

While my life can be overwhelming, exhausting and many times, more than I can cope with, I know that your experience can be better or worse than mine.

When we say things like it’s awful to miss your life before Autism, you have no idea how hurtful and demoralizing that can be. It takes courage to admit something like that.

Do I sometimes miss my life before Autism?

You bet your ass I do!!!

Does that somehow mean I don’t love my kids with Autism more than anything in the world?

You bet your ass it doesn’t!!!

We may be Autism parents but we’re also human beings. I can’t imagine anyone not missing the life before Autism at some point along their way.

That’s not a bad thing. We can both love our kids with Autism and still miss our lives before. These things are not mutually exclusive.

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  • kimmy gebhardt says:

    I don’t see the person’s actual response so I don’t know their exact wording, but I’m curious why you find it so offensive? I get that it feels judgmental but weren’t you asking for opinions and wasn’t that her opinion? To me it sounds like that person is afraid to feel okay with missing the ‘before’ because it probably feels disloyal to her kids. That said, I know of very few parents (not just autism parents) who don’t occasionally miss the before. Doesn’t mean they don’t love their kids, just means that being a parent is stressful sometimes.

    • Facebook Profile photo Rob Gorski says:

      Kim, I didn’t find it personally offensive. I was hoping to make her public comment to a question that many of us struggle with in real life, a teaching moment.

      I’ve spoken with countless parents from across the globe and while our lives are all different, many of us still carry around guilt for feeling the way we do sometimes. No one should feel guilty about missing their life before being an Autism parent, or any parent for that matter. Kids are tough, especially kids with Autism or other potential disabilities. Missing an easier life doesn’t mean we don’t love our kids. It simply means we’re human.

      Did you mean do or don’t? Secondly, this was social media comment and it was made about me actually having asked an awful question. It wasn’t an answer to the question itself. She could have simply answered the poll and said no. Instead she went after me personally for asking the question in the first place. I don’t care what she said in regards to me but I dislike the message such a comments sends to other people. She’s aloud to feel the way she does but she needs to allow others to feel the way they do without judging them.

      That was the point. This is just endemic of a problem still present in the Autism community. We still judge each other because we make assumptions about what other people’s experiences are based solely on our own experiences and not accounting for the fact that theirs is different. That was the point of the post itself. I wanted to remind people, who should already know but seem to have forgotten, that every situation is unique.

  • Mark says:

    This is a totally valid question. As you say it doesn’t mean you don’t love your kids. I have 1 with ASD and 1 without. The high level of supervision required for my ASD son has massively restricted my life and career and to be honest I resent this. Parenting is hard but they do grow up and get more independent ( if they are NT) – this is not a future I see for my ASD son. At the moment I can’t work and he can’t go to school because of violent outbursts. The endless appointments and making arrangements to accommodate his difficult behaviour are wearing. So yes I do really miss life before autism. I miss feeling genuinely relaxed.

    • Kiran says:

      Mark I feel your pain. I am an autism teacher and everyday I see parents coming to pick up kids, looking totally worn out. I understand I may not be able to help but as a teacher I can make their day better by keeping their child for 6 or more hours while they can get some peace and quiet to rejuvenate. Join me at instagram @onspectrum so we can share ideas.

  • LTJ LTJ says:

    I had Kurt Eichenwald tweet at me that being an autism parent “isn’t hard” because he’s raised a ch…

  • Beccajoojoo Beccajoojoo says:

    I think it’s a valid question, not a value judgement. I miss my life before parenting much the same…

  • Facebook Profile photo Rob Gorski says:

    Well said and thank you for sharing. The whole point of the question was for us to acknowledge that we can sometimes miss life when it was easier and it doesn’t mean we love our kids any less or we would change a thing.

    So many people feel this way and are consumed with guilt as a result. If people see that they aren’t the only ones that sometimes feel this way, maybe they will be more forgiving of themselves.

    Thank you so much for sharing your thoughts.. ☺

    • Ainslie says:

      I don’t think there is a parent alive who would not say that they don’t miss things like quiet, disposable income, romantic weekends away, going out for dinner and a movie at the drop of a hat…….etc etc etc…… if anyone said that I would say they are a massive liar….

      In saying that though I don’t think there are many parents who would want that life back without their kids. Kids grow up, life gets easier….experiencing things with kids in tow is next level awesome.

      I don’t think these feelings are in anyway mutually exclusive.

  • Ainslie says:

    This is interesting. I was the one who said I sometimes missed my life before parenting. I miss freedom sometimes but I prefer my life now even though it’s more complicated. Autism doesn’t really factor in to the equation. I think parenting in general is just difficult, but that is not to say it is bad. If I am specifically speaking about my autistic child, I think I am a ten times better human being because of him being the way he is. I have learned to advocate because of him, learned how far I can push myself and what I am capable of. I am infinitely more successful because he is in my life. If he didn’t have such high support needs I would have just kept bumbling through life. I wouldn’t have even gone to university. He shows me how to be brave and persevere.