DS potentially autistic, cant brush off the guilt

[WhyMe13]

AIBU to feel like this, or should I get over it as it's not about me it's about DS.

Why do I feel so crappy? I dont love DS any less infact I would love him more, if that was actually possible.

I have know that my DS behaviour was not similar to others little boys in his class. DS displayed signs that I had noticed when he was quite young, however as he was very young I decided that I should just wait a little longer to see if it was an age thing or just him.

As time has gone on its becoming more visible, that there may be something there. I was ok with everything initially, as I didn't think that DS needs were severe, from what I can see he can function in everyday life but at times can be distracted when he is over stimulated and will start stimming, covering ears have random meltdowns. In class DS is a very able child when it come to his learning, academically he is doing great however his speech is not as refined as others his age. This hinders him being able to communicate with his peers he tends to play independently and does not initiate conversations or play.

What has started to grate me friends and family have noticed and have discussed my DS amongst themselves. It was only recently off chance that a friend mentioned this to me and it's been bugging me since. The feeling I got was that everyone was pitying me and insinuating that my child was not intelligent and difficult to handle. To me he isnt any of that hes a pleasure, hes the sweetest boy and I wouldn't change him,
Im from a community where people look down on those who have a disability or are different to them.

I don't know what I'm asking really, I think I just need some advice.

In a similar scenario from the opposite side - there's a child in my family who displays a lot of behaviours characteristic of ASD. Not wanting to distress their parents unnecessarily, a few members of the family did discuss it amongst themselves, to make sure no one was overreacting, and to work out the best way to mention it to the child's parents, as it seemed like the family could benefit from more support.

The fact that they're discussing your child isn't automatically negative.

Why do you feel guilty? Do you feel it's your fault or do you mean you feel guilty for not getting him diagnosed?

Im from a community where people look down on those who have a disability or are different to them.

So pretty much any community then.

Id get him assessed so that he can be given accommodations so he doesn’t get overwhelmed. I’m not sure what you have to feel guilty about? You sound lovely and supportive. Who cares what other people or a community thinks? Your DC is more important.

I think you feel a bit gossiped about and so a bit betrayed but maybe, as someone above has suggested, there's no malice in it and it's not necessarily negative.

You wouldn't be the first to brush off a possible SN diagnosis if their symptoms aren't severe. Even if you do seek help, there is no guarantee that you will get the diagnosis straightaway. My DD has only been recently diagnosed for ADHD and she is 18. I always had an inkling something was 'wrong' but the schools brushed it off and so did CAMHS, with whom we ended up twice. It was only on the third time that she was diagnosed and, according to one test, she was off the scale.

My DS is autistic. My family and the in laws never once raised any issue with his behaviour probably cos my family at least are all probably autistic as well.

When we told family about his diagnosis, I did feel like my parents didn't quite understand the diagnosis. They thought he was being labelled as 'thick' etc. When it was actually the opposite.

I'm fiercely protective of my DS. Mainly because I can relate to so much of what he's going through as stuff that I also went through as a child. I wish I had been able to understand myself in a way that he can now. I'm doing as much as I can to help him navigate that. I'm lucky in that most people I know don't judge him. But if there is someone who I do think is judging him, I have no guilt about cutting them out of our lives.

Do you mean DS in your title?

Hi @WhyMe13 I’m a parent of an autistic child and on my journey I have really had to learn to shut opinions out. It’s very difficult especially when the opinions are from people close to you but really your energy needs to be spent getting your DS the support he requires.
Getting good support in place is a fight for many parents of SEND in this country and you may need to focus on that for now.
There will always be opinions that you don’t need or want to hear, but hopefully after some time, it won’t bother you. Your son will be the same person that he always was.
I wouldn’t even think twice about the fact that they have been talking behind your back, they aren’t you and they aren’t in your situation, so they really can’t pass comment accurately.

@MolliciousIntent

I understand where you're coming from. I think some of the language that was being used when my friend told me really hit home about what peoples opinion of my child would be.

What language was used, op?

@Swonderful yes theres a part of me that feels ive done something wrong during my pregnancy.
I have read into it and there is nothing to suggest that this is the case, it's just unexplained. So it's a little ignorant of me to think this way. However I feel that this is the way a lot of people will think.

@Cantfeelmuchthesedays
Some of the words used were 'odd, weird, strange'. This is to describe a 5 year old child. Maybe I'm being overly sensitive but it hurts to know this is what my own family think so what will outsiders think.

Not all outsiders will be as prejudiced as your friends and family though. Not all of us, nt and nd alike, think that different = bad.

However I do think you would be doing your ds a grave disservice by not seeking a diagnosis for him. Autism is a disability, not just a few quirks. So if he has it then better to know so he can be properly supported.

You need to ask hq to change the title if you mean your DS.

My autistic DS is odd, weird and strange and that’s what makes him so brilliant! Wouldn’t it be boring if we were all the same! He has the best sense of humour and gets jokes that go way over the head of others his age, he knows EVERYTHING! I think I’m quite smart but he knows everything about everything. I think of his weirdness as my bonus added extra - it will make him stand out from the crowd as he goes through life in a positive way. You’re his mum - make him realise his weirdness is a superpower, not a drawback. It’s hard but very liberating x

I would perhaps put a bit of distance between yourself and that person for now. It may be good for you to reach out to other parents in your area that have gone through similar and surround yourself with people who are open minded and non-judgemental. There’s often Facebook groups and local charities which can offer support and local play groups for children of all most ages.
You also don’t need to share any diagnosis with everyone if you don’t wish to.