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Here are some suggested organisations that offer expert advice on special needs.

Is there a forum about autism/non-neurotypical children on Mumsnet?

33 replies

guilty100 · 22/09/2017 08:28

Maybe I dreamed this but I am sure that, a while ago, I stumbled across a sub-forum about this, and I can't find it. Asking because my friend's child has just been diagnosed as autistic, and I remember it being quite an empowered place where autism was not treated as an illness - I think she'd really benefit from seeing it. Any help appreciated.

OP posts:
zzzzz · 22/09/2017 16:31

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blankface · 22/09/2017 17:01

Perhaps it's time you stopped trying to meddle in your friend's life and that of her child.

Coming to terms with a dx and accepting what it means for you, your child and the family can be traumatic as it forces you to re-evaluate your future.
She's probably still in shock and thinks she needs to "fix" things. In time she will see family members with similar traits to her child and she will realise that autism is a very wide spectrum with strong hereditary links.

You need to back off and let her do things at her own pace, let her learn what interventions are best for her and her child and their future.

LiefievdM · 22/09/2017 20:38

@guilty100 I think I get what you were trying to say about your friend and her culture. I am married into a culture/community where invisible disabilities/disorders like autism or adhd, etc. are so unwanted and negatively perceived that there is in fact no word for autism or adhd (or many other invisible disorders/disabilities) in their language.

If my in-laws were to use only their native language to describe my child's suspected autism, they would be using something like "the naughty/stupid boy" instead of an equivalent word for autism. In many cases the child is often attempted to be hidden away by families, because it is embarrassing/shameful when the poor child behaves "badly" in front of others.

It has been a challenge at times to explain what autism actually is - especially the lifelong-disability-incurable-especially-not-by-some-alternative-mumbo-jumbo concept. I have been approached by many well-meaning but indoctrinated/uneducated relatives telling me about some cure involving a special diet or concoction or some person on youtube in america. I usually tactfully explain that what they are suggesting would be equivalent to suggesting that a person with no legs eat a special diet or drink some concoction (or whatever the suggested cure is) so that his legs can grow back. However, that person might find a wheelchair or similar aid useful in their daily lives, just as an autistic person might find visual schedules or ear defenders useful in their daily lives. And their focus should be on trying to find out how we can best help my son to be himself. Help him learn to communicate with us. Find ways to minimise his anxieties. Find out what he really likes and do more of that and less of what he really hates. Etc etc etc. Mostly just accept him for the wonderful funny loving little boy that he is. Get to know him. Stop trying to cure him.

So I guess what I'm trying to say in a very longwinded way is that I think I understand this culture/situation that your friend is in. And I understand your concern for her son and your desire to show her that autism isn't this thing that needs to be cured that her culture/family has taught her to believe. That it is, yes, a lifelong and often challenging neurological disorder, BUT that it is nothing to be ashamed/afraid of. That there are people with autism all around her that lead perfectly happy/content/regular lives, albeit with hard work and challenges thrown in along the way.

And that there is loads of support out there - as there absolutely is here on the SN boards.

What helped a great deal for me (besides the enormous help on these boards - even just lurking) was finding a local SN charity that has playgroups with loads of likeminded parents and really helpful volunteers. Taking to people who are dealing with the same things you are dealing with, or have gone through it all already, is so valuable. There is information to be had, but it also helps give me a sense of much needed perspective and of not being alone. Her Local Authority should have a "Local Offer" webpage where she can find info on local parent groups and other help available.

I would recommend any day that you send her this way. These boards are probably the only "safe space" left on mumsnet from what I can see. Endless support and help and lots of virtual WineBrewCakeFlowers.

(Eeeek so sorry for that looooong post)

Olympiathequeen · 26/09/2017 10:42

Perhaps you could look into actual physical groups locally for your friend?

Whatamesshaslunch · 28/09/2017 20:43

This all sounds like a huge misunderstanding that has gone a bit wrong. Stop shouting everyone Gin

She could try looking up local groups on google or Facebook. There are plenty where I live and some frequently hold meetups/talks/sessions. Hopefully now they have a diagnosis, they'll be directed towards some valuable resources. Hopefully they have a good health visitor and paediatrician.

Ellie56 · 02/10/2017 11:14

Not sure why you're getting such a hard time on here but I found the NAS extremely helpful when my son was diagnosed with autism 15 years ago.Lots of useful information here.

www.autism.org.uk/about.aspx

Also information here which specifically says there is no cure for autism, but talks about therapies, interventions etc which can help.

www.nhs.uk/conditions/Autistic-spectrum-disorder/Pages/Introduction.aspx

researchASD · 03/10/2017 14:54

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Cooryna · 06/02/2019 23:51

My two-year-old daughter has been diagnosed with autism items two weeks ago and would like to know how much speech and language helps her? I would like to do the therapy and take it away but I can not even find it in the center of therapy, can somebody tell me if I can find a private therapy center in the slough or near area? Thank you

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