Published on 12, July, 2020
Hi everyone, we received a diagnosis for our son last year and he has Autism. I always remember the psychologist saying to us that he has the worst possible diagnosis in that it isn't apparently visible and so when he does start to get distressed in public it just appears as bad behaviour. Likewise at school, he doesn't get the support he needs because they look and think oh he seems to be doing ok, but it's all going on inside his poor little mind and body.
We are currently on holiday on Spain and it has by and large felt like torture and it also feels like the stress is tearing my wife and I apart. Yesterday my son, who is 9 years old turned around and swore at his mother. This is not new behaviour as it happens on a daily basis. However, this episode feels like it was the straw that broke the camel's back. My wife just burst into tears and spent the evening back in our holiday home in tears. I just feel that it was this one time too many and she just couldn't cope. This may sound strange but even though my son was diagnosed over a year ago it feels like it is only NOW that we are getting to a place of accepting it, really accepting it at a deep level. I feel like I reached this point a few months back but my wife is now only just getting to this place of acceptance. The stress from having to constantly manage our lovely boy, who we both adore, feels Ike it's tearing her and I apart and I even found myself thinking last night that maybe we would be better off separating.This is more out of desperation than anything else.
My son has a diagnosis as such where if you were to see him, say playing around the pool etc you would not see any autistic traits or behaviour. Therefore when he does react to say having lotion applied we just feel embarrassed by the looks over from the other parents or people who are present. I know I shouldn't be bothered as he can't help it but I do. We are both sensitive people and so end up feeling really ashamed and end up leaving which in turn affects our other daughter. I feel so acutely aware of how much our little girl also suffers from her brothers behaviour.
I have made a decision that I am going to become an expert in autism in order to be the best possible parent to our son because I believe he needs us to be there for him. I would love to hear the holiday experiences from other parents as we are currently feeling isolated and lonely with it all. It feels like we are at the beginning of our journey but our son needs us and he needs us to figure this out so that we can parent him better.
Hi, this sounds really stressful. It may seem like you are alone but you really aren't. I have the same issue. My daughter, 16, was diagnosed with autism last year. She didn't show any autistic traits but only a lot of anxiety and didn't engage with peers. She did have limited speech but we thought this was due to anxiety.
It wasnt until 2020, when we moved house, school and area, that she struggled a lot more than her siblings and had troubles in school and home which is when CAMHS got involved and she was diagnosed. We are still trying to accept this because she doesn't show autistic traits, even now. So on a bad day, it looks like bad behaviour.
Last year, we went camping for 2 nights, and she got really overwhelmed by the noise of my son and the family arguing that she went for a walk at 5am without telling me, to the beach, 15 minutes away, walking. To others it seemed like a teenager not getting her way and being naughty and just a teenager, when deep down, she was overloaded by the change, not having a quiet place to go, doing a lot of things, and all the anxiety but excitement which isn't the best emotions to mix.
We get judged on a daily basis. At school she's fine and happy to be herself, an autism specialist school, so she will wear ear defenders, in and out of public, carry her weighted blanket around town, use different ways to communicate. But at home she won't. She won't wear ear defenders, or communicate with us because she looks 'weird'. The public see a teenager, who is wearing ear defenders. We see a teenager struggling with noise and crowds.
The public need more autism awareness and it should be all special needs and disabilities. More people are being diagnosed everyday and the public have no clue what 'autism' is.
Your son is probably struggling with the change, new place, crowds. Do your best to help him, and everyone else. What calms him? Who does he prefer to talk to? What activities does he like? Involve his favourite things. We did this with my daughter and this could stop a meltdown coming. Just make sure your daughter has some time doing things she likes aswell. I have 3 children, eldest on the spectrum, and honestly it sucks. I do have a husband, but has no understanding of autism and isn't bothered because she looks 'normal'.
I know this probably doesn't help but I do wish you luck and hope you enjoy the holiday.