nav[aria-label="Primary Navigation"] { padding: 0; & ul { list-style: none; width: 100%; display: flex; flex-direction: row; justify-content: start; align-items: start; gap: 30px; padding: 0; & li { margin: 0; } & ul li { list-style: none; } } }

We want to hear from you: please tell us about your experience of the online community.

First post ? does anyone else struggle to open up about their child's autism?

sarahlou123

Hi my name is Sarah and this is my first post. I wonder if anyone has also experienced this; several years ago when my son was first diagnosed with ASD, I told friends and family about his diagnosis and received so many negative or trivialising comments that for a number of years I have found it too anxiety provoking to talk about him at all, unless I have too. The problem is I sometimes really want to talk about him and the challenges etc. He was diagnosed at age 3 and is now 11 and although I sometimes read other people's comments on forums like this I very rarely post. In real like if I'm in a situation where I realise someone is going to ask me questions about my son, my heart starts racing and I get really nervous. I feel a bit bad about this- that I should be better at talking about him but I'm so aware of the negative comments that could come next. It feels like I'm making myself really emotionally vulnerable by talking about difficult times etc and then if the person doesn't respond in an understanding way I regret saying anything. Is this just me? Thanks.

Find more posts tagged with

Comments

Cher_Alumni

Hello @sarahlou23 and welcome to our community! Thank you for joining us

I hope you don't mind but I've moved this post over to our Autism and Asperger's discussion board and tweaked the title so others can spot it and offer support.

I'm sorry you've come up against people being negative and trivialising your experience. Although I don't have a child with ASD, I can relate as I have a personal matter that makes me feel the same too. Whenever I suspect the conversation about it is edging closer, I've been known to divert the convo, downplay how I feel and make my response easier and more 'palatable' for other people to cope with. Does that sound familiar?

The thing I've learnt is that you are then left with the residual feelings of hurt, upset and anger while people who might have offered support didn't get the opportunity to do so. It's hard being open, I really get you, but please don't let the responses of a few put you off ever doing it again. Those people who have responded off in the past? Their response was a reflection of them, not you. And, without sounding all self-helpy (

) I need to quote Brene Brown on what she says about sharing our stories with others (psst read her books!):

Our stories are not meant for everyone. Hearing them is a privilege, and we should always ask ourselves this before we share: "Who has earned the right to hear my story?" If we have one or two people in our lives who can sit with us and hold space for our shame stories, and love us for our strengths and struggles, we are incredibly lucky. If we have a friend, or small group of friends, or family who embraces our imperfections, vulnerabilities, and power, and fills us with a sense of belonging, we are incredibly lucky.”

I have more quotes if you need them

Just to add, our community is also a non-judgemental friendly safe space and you can always post here about anything. Maybe even taking a look at other people's posts in this category will help. Don't be afraid of getting in touch with other members.

Best wishes and I hope we can talk soon.

sarahlou123

Thanks lots for your reply cher_scope. Yes that's fine to move my post to the ASD group. I will have a bit more of an explore now I've found this! ?

Tori_Scope

Give us a shout if you need anything @sarahlou123

I'd also like to nudge you towards Scope's Parents Connect service, which is a 6 week programme for parents of disabled children.

The National Autistic Society (NAS) also run a parent-to-parent emotional support helpline, which you could find helpful?

RichardLel

I can relate to your post about the anxiety of caring for a child with autism and the things go through as a parent under the spot light.. I can’t talk very openly about my family as to have to respect their privacy. For me still suffer the anxiety of parenting only found out in the end I was caring for Aspergers and myself was Aspergers which gave the answer.. I sorry to hear you are struggling and I only got through by accepting help than being on my own. ?

Lou_Scope

Hi Sarah,
It’s great that you felt it a safe place here to share.
I too have felt this, it’s perfectly normal.

As a mum we are expected to be superwomen and as a mum to a child with a disability even more than that.

Not everyone will understand you and your sons journey. And that’s okay they are not living your life.
I would definitely recommend parents connect as a supportive encouraging place with other parents.

And I hope you feel able to post on here again and talk about your son.

bazzer23

Totally understand you. You love your child and understand them more than anyone. Keep talking to people who have experience, including other parents. Also know you aren't alone, there will always be someone to talk to. I have a 4 year old, recently diagnosed as high functioning autistic, I still spend time just watching him playing and get teary eyed for no reason!

ASDIBS

When my son was initially diagnosed I did find it difficult. We don't have a large family and I am very close to my Mum. The moment I told my Mum, she was reading all about it to try and understand. My Mum took my son to school so it helped that she had an understanding. My son was labelled as the naughty child (pre diagnosis) and therefore, once diagnosed I told everyone in the hope that they then realised his struggles. Both myself and my son tell anyone and everyone and some people understand, some don't. I now just think that if people want to understand then they will research. I find it's always better to let people know. Good luck for the future. I hope it gets easier