Today was a hard day. My son had a meltdown at school and the school asked me to pick him up early. He then had a huge meltdown in a shop, biggest one for a long time. And then an old lady told him off on the way home for “making that horrible noise”. Being a parent of an autistic child is so tough. I’m also most likely autistic myself so the meltdowns really rattle my brain too. I feel awful this evening.
then an old lady told him off on the way home for “making that horrible noise”
This sort of behaviour annoys me too - I like to reply with sarcastic acknowledgment of kindness "oh thank you for being so understanding. The world needs more people like you who can really see when a child is in distress and offer them support and encouragement to get through the pain. You are an angel".
You have a tough job as the parent of an autistic child, especially when the traits cause meltdowns like these. If you are autistic yourself then it can be many times harder as often the behaviour and noise can be really stressing for your senses in ways neurotypicals cannot understand.
There are some good articles that may be useful, found in the Advice and Guidance section at the top of the screen - articles like this one on meltdowns: https://www.autism.org.uk/advice-and-guidance/topics/behaviour/meltdowns
Does the school know if your childs autism? The SENCO person at school may be able to find additional support for you to help deal with these.
If you do find it is becoming a strain then please try to get some outside help if you can, even if it is just talking with a therapist who has expertise in this area to help with advice for your child AND for yourself.
The last thing you want is to be at the risk of a meltdown yourself when you are in charge of your child, so learning about it and developing coping mechanisms is really important in my opinion.
I’m also most likely autistic myself
I would say this is pretty important to establish and you don't need a formal diagnisis to make progress here. Use a search page to look up "free online autism test" and take a few of the tests to see if you score enough to be on the autism spectrum. You don't need to reach the criteria for a diagnosis but if you have clear autistic traits then this is the pointer you need to find out more about the condition and how it affects you then work on reducing the impact these traits have on your life.
It may seem like more unnecessary effort at a difficult time, but the outcome is likely to be a much healthier future in as little as a month or two, plus the knowledge will help with guiding your child through his neurodivergency.
You have a challenging set of circumstances and my heart goes out to you. Please take care, call in what help you can to start this process and talk to us and ask questions as you feel comfortable so we can be your friend along the way.
Hi Iaia.
Thanks so much for your kind response. Yes we have a lot of support in place for my son at school, he has an EHCP now and a 1:1 support teacher, but we are are always on the edge of whether he really can be supported enough in a mainstream school. It’s not the best school for SEN support, I’ve had to push hard to get him what he needs, but also the idea of changing school feels so hard to him. It’s a balancing act, and overall he is thriving now, but he just has these extreme meltdowns every other week or so. I often blame myself, but it is so hard to anticipate every trigger. This week it was having the flu vaccine- the sensory experience of it up his nose was just too much, and I wish I had expected that, but then again he tolerated it fine last year, so you just never know.
I have a therapist I talk to about it, but I think you’re right that it might be worth finding someone with more experience in this area, with neurodiversity. And talking here helps a lot. I have parents I know with autistic children, but their struggles are so different to mine as primarily it’s the meltdowns and the extremity of my son’s behaviour that is hard, and often I feel very alone in dealing with it. My daughter, his twin sister, is also diagnosed with ADHD and although her autism test was negative, I feel strongly she is autistic also. She has so many sensory difficulties and her meltdowns are even more extreme, though they rarely happen at school.
Anyway, I really appreciate your response.
all the best,
Emily
Hi Iaia.
Thanks so much for your kind response. Yes we have a lot of support in place for my son at school, he has an EHCP now and a 1:1 support teacher, but we are are always on the edge of whether he really can be supported enough in a mainstream school. It’s not the best school for SEN support, I’ve had to push hard to get him what he needs, but also the idea of changing school feels so hard to him. It’s a balancing act, and overall he is thriving now, but he just has these extreme meltdowns every other week or so. I often blame myself, but it is so hard to anticipate every trigger. This week it was having the flu vaccine- the sensory experience of it up his nose was just too much, and I wish I had expected that, but then again he tolerated it fine last year, so you just never know.
I have a therapist I talk to about it, but I think you’re right that it might be worth finding someone with more experience in this area, with neurodiversity. And talking here helps a lot. I have parents I know with autistic children, but their struggles are so different to mine as primarily it’s the meltdowns and the extremity of my son’s behaviour that is hard, and often I feel very alone in dealing with it. My daughter, his twin sister, is also diagnosed with ADHD and although her autism test was negative, I feel strongly she is autistic also. She has so many sensory difficulties and her meltdowns are even more extreme, though they rarely happen at school.
Anyway, I really appreciate your response.
all the best,
Emily
Thank you for this!
I don’t think there is enough conversation about what it’s like to be autistic and parent autistic children. Yes it’s so tough on my sensory system dealing with the kids having their meltdowns. Headphones and earplugs helped me a lot when they were toddlers especially. I still use them sometimes and go outside a lot to help me regulate my emotions.
And thanks, yes it’s so frustrating with the diagnoses. Even though the assessor said the criteria is not suited so well for girls, and they are massively under-diagnosed, she still said it didn’t meet the threshold. Considering how many sensory issues my daughter has (smelling everyone, gets very upset with new smells, can’t bear to be hugged, jumps at sounds) i just thought, what more do you need here to meet this criteria?! I will definitely do the assessment again when she’s older.
My daughter, his twin sister, is also diagnosed with ADHD and although her autism test was negative
Hello there! So in regards to this, I’d recommend trying again with getting her a diagnosis when she’s a bit older. Autism in women tends to be overlooked or misdiagnosed, especially with children. My daughter barely got her diagnosis (we were told she is “borderline”).
I’m also most likely autistic myself so the meltdowns really rattle my brain too.
I can empathize with this. I’m also an Autistic parent of an Autistic child, so it gets very overwhelming when my daughter has her meltdowns. I find that I struggle with showing her empathy when she breaks down because I think to myself “Hey, I go through the same sensory stuff too and I get over it, she should be able to as well,” which is not fair for her. It’s something I’m working on getting better at.
