Son needs support

Browneyedgirl82 · ‎30-07-2021

Hi, I've been trying to find avenues to get my 11 year old son support for the past couple of years. He is diagnosed as ASD1 although I believe it to be closer to a Level 2 due to social skills and working memory issues. Also ADHD but this is mainly due to the lack of memory and focus rather than hyperactivity. Over the past couple of years his Anxiety has increased immensely. Along with it has come self esteem issues, self hatred, lack of motivation and now he has started punching himself in the head when he gets upset. I have been on a wait list since Sept 2020 to get him into a Pediatrician. He has been to see 2 psychologists who were not helpful. I feel he needs medication for the Anxiety as a temporary measure while we find him a suitable therapist, however without a pediatrician we cannot get this. My question is, where do we turn for support now? Funds are limited as we do not have NDIS. I'm worried that if we can't get him support soon it will take a very long time to fix the damage currently being done.

therising · ‎18-08-2021

Hi Browneyedgirl82

The desperate need to find a break must be overwhelming. I can only imagine the exhaustion you must feel and then I imagine I'm way off when it comes to the full extent of that exhaustion.

The system is definitely broken if you're having to wait until February. With more and more highly sensitive kids being born every day, there's a growing demand for specialists when it comes to ASD. I wish the government would wake up to this so that people like yourself wouldn't have to wait and seek private consultation on top of it, which can be expensive.

I know someone now in her 20s who, looking back and in connecting the dots, is definitely on the spectrum. I can recall looking after her and her sister overnight when they were primary school age only to face the following morning and the drama of putting on shoes and socks. It was intense. I learned later that it's the seams in the toes of socks which she couldn't tolerate the feel of. She wouldn't wear just anything outside of school either. There'd be a typical outfit she'd love, typically baggy so she couldn't feel anything rubbing on her skin. She was definitely not a hugger either. Admit, I'm not much of one myself. Basically, her sense of touch was so intense as she was growing up that she had to manage it to the best of her abilities - no seams, no tight clothing, as little human physical contact as possible. She's really pushing herself to make more eye contact with people these days and I can tell it really challenges her. She's admitted she doesn't speak unless she really feels the need. Initiating conversation remains a challenge for her, one she's also working hard on. She is a young lady who is so incredibly sensitive and gentle who has a truly brilliant mind. For her age, she has a mind like no one I know. While she finds her place in this world, studying like a beautifully self-disciplined champion, she possesses the quite wisdom of a sage, something she only shares when prompted thoughtfully.

It's hard for people who are so sensitive and sometimes harder for the people who need to guide them through a somewhat insensitive world. Watched an absolutely brilliant very enlightening video on my laptop the other week which is a very different take on autism, given by a lady who faces the challenges of being sensitive herself - 'Why everything you know about autism is wrong | Jac den Houting'. Hope watching it make some difference to you in the way forward.

BeADodo · ‎21-08-2021

Hi Browneyedgirl82,

I relate a bit to some of the things you’ve posted and just wanted share my thoughts.

I am/was high functioning ASD as a child. I’m 32 now and you wouldn’t know I was ASD. I was very shy and spiralled whenever I felt embarrassed or uncomfortable, also had some touch sensory issues. I would latch on to every little thing. Eg if someone said ‘hey how’s it going’ in passing and I said ’you too’, I would think about it for days and feel stupid for days. It wasn’t until someone explained that no one really said the right thing in those brief social interchanges, that I stopped caring. I didn’t understand it at all until then. I actually thought everyone else but me knew what they were doing in social interactions and was confident about it, and I was just weird for not knowing.

My parents apparently spoke to all my teachers and said that I would completely withdraw if they disciplined me. I didn’t have ADHD though and enjoyed learning new things. I do remember feeling like i was getting away with some things that other kids didn’t, but I think it definitely helped me. Though I still hated speeches at school and would have never seen myself as a leader (I lead a team of 18 adults now!)

Predicting feelings is something I always did and occasionally still do (though only when I am feeling depressed or a lack of motivation which comes and goes). For me, its to avoid being disappointed. But I always forget that I do actually end up feeling better by doing something like mindfulness or exercise. But it’s not until I realize that myself that I snap out of it.

I also used to hit my head against the wall/door out of frustration, and I still do whack my head from time to time when I feel all fogged up. I know I don’t want to feel some way but how do I stop? I guess I always thought the brain is what controls it, so giving it a jolt might help. More recently jogging helps me with the brain fog.

I think what helped me was lots of love and support from my family. I wanted to feel like I wasn’t a problem child and didn’t like it when I was aware that people knew I had ASD.

It took a while, but every little lesson I learned along the way about how to deal with people and social situations helped me get better at navigating them.

I also had to want to do it. I liked it when mum suggested I see someone to ‘help me write plans for social interactions’ rather than ‘why I struggle interacting’

Browneyedgirl82 · ‎08-11-2021

Thank you BeADodo. I can relate to so much of what you said. I have unending empathy for the situations my son encounters every day. What so many of us take for granted, is a real struggle for him. He and my husband come home every day exhausted from pretending to be neurotypical, which unfortunately leaves me with the brunt of their behavioural issues and a family which either shuts down or dumps their emotional load on me each night. What kind of specialist did you see to help you navigate social situations? I am very interested in this. I'm trying to teach him at the moment about different feelings and things like humility which I have explained to him as not thinking less of yourself but thinking of yourself less. He just cannot grasp a lot of concepts. I've saved some youtube videos to watch with him tonight which will hopefully explain it better than I can. It's just so hard to do all of this without support from professionals.