The pain of being an autism parent – Fri 29th Aug 2014

By | August 29, 2014

There are two distinct types of “pain” associated with loving an individual with autism (or in our case, two).

There is the emotional pain. The realisation that whatever traditional hopes and dreams you may have had for your child won’t be happening, dreams that perhaps you hadn’t thought about at all until a doctor mentions autism and hands over leaflets.

This pain takes some time to dispel and it replaced by a desire to do the absolute best you can for that individual. Whether it be by battling to ensure they are in the most appropriate educational setting for them, medical assistance etc, I don’t use the word “battle” lightly because the help isn’t automatically a given, you have to seek it out and then there are cuts and budget constraints. Constraints that shouldn’t really effect a four year old child, but they do.

And then there’s the physical pain.

Pain that can come during or post meltdown. Pain that isn’t necessarily meant at the time but it’s the only way that the individual can express and release their emotions. It hurts but you have to move on quickly.

Sometimes pain can come unexpectedly. Fortunately D seems to have grown out of this now but, if she’d had a distressing dream and she was waking up, still wondering whether it had been real or not, I’d be punched as soon as she saw me. Once in the face. Again, a case of moving on.

Yesterday was another such incidence, we were all set to head off for our afternoon on the river, when T accidentally shut my fingers in the car door. I knew instantly they weren’t broken but extremely painful and I have to admit I screamed. There was lots of reassurance for T that it wasn’t his fault but there was no concern or empathy shown by T, merely annoyance that it had happened. I can’t pretend that this lack of concern didn’t hurt (on top of horrendously painful fingers) but, again, we had to get past this quickly and onto our trip. Obviously if they had been broken, our afternoon would have taken a totally different course, phew.

It didn’t stop us from having a good time and fortunately (very fortunately) I’m just bruised.

Today, when we did our “best and worst bits”, I mentioned very quickly my fingers and T immediately got defensive but there was still no “how are they, how are you?”. More reassurance that it wasn’t his fault, just an accident but it just goes to show that however far you perceive your child may have come, certain situations will always indicate where social skills or other aspects can be lacking.


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Anne on 30th August 2014 at 7:29 am.

oooh ouch! I hope your fingers are healing well now xx I had a lot of frustration taken out on me when my son reached puberty. He would often try to strangle me, and by then he was already bigger than me so it was pretty scary. Fortunately he did grow out of this stage and now any meltdowns are dealt with privately in his own room or he goes for a walk. I totally understand your other type of pain too, my son has reached his level 3 in Accountancy, just one more year to go, but he’s put it off a year already because it means he will actually have to work to complete it and he just doesn’t believe in himself enough to try it. College he can manage, work, he can’t 🙁


Jeannette on 2nd September 2014 at 9:58 am.

Gosh, the puberty time must have been really scary for you, I’m glad he’s found ways to self-calm now. T is generally very much a “withdrawal quietly but angrily soul” but D is more prone to violent outbursts. It’s definitely a learning process for all of us x


Lauren Porter on 31st August 2014 at 10:21 am.

I understand this completely, Bella once got really annoyed that I didn’t turn the TV on fast enough as I was lying at the bottom of the stairs in agony after falling down holding her brother. In fact I think she may have stepped over us to get the remote lol (now lol not so much then!)


Jeannette on 2nd September 2014 at 9:59 am.

Thanks Lauren, poor you at the time. The lack of empathy is something that concerns me as T starts (tomorrow) secondary school but crossing my fingers that he’ll cope x


Marylin on 31st August 2014 at 9:10 pm.

I know this so well. It’s the headbutting and kicks in the face that hurt physically, but mostly it’s knowing he doesn’t understand that it hurts. The worry of what will happen when he’s bigger and stronger. Time will tell…
Hope your fingers are better soon! *hugs* x


Jeannette on 2nd September 2014 at 10:00 am.

Thanks Marylin, they’re a lot better now but it was really horrible at the time x


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