Toddler daughter with suspected autism

[AmyG87]

Hi

My LG is 3 yo and is on the waiting list for autism investigations. It has taken a long tome and a lot of effort just to get her on the waiting list as I felt like everyone was dismissing my concerns.

I just want to know if anybody has a daughter on the autism spectrum, and what their signs were to make you first concerned?

Everywhere I look, it is predominantly about boys on the autism spectrum so I'm just wanting somebody to relate to really.

Everyday there is a battle with something and it's draining x

Ask locally for people to put you in touch with support groups.
Your Nursery, or your HV or if you have a home visitor, or can access a children's Centre.
It is good to have someone else to talk to.
There are National organisations, like National Autistic Society, that have local groups and forums. Or look at the Charity Contact.

NAS have a really strong presence locally with meet ups in the day, in the evenings, some training or information courses. etc.
Lots of support groups on Facebook too if you have a search.

@AmyG87 I am sure there have been some books written on autism in girls as it can present quite differently.

The website thegirlwiththecurlyhair.co.uk/ has lots of stuff focusing on autistic girls. Might be worth a look.

Thank you both :-) Do you have any particular recommendations on books @Niffler75 ? X

Barry Carpenter is a well respected author. He has written a book 'Girls and Autism'. x

My daughter was diagnosed at 2.5. She is now 10. She is non verbal and significantly impaired. She developed typically for 18 months. Interacted well, basic speech, followed basic instruction etc she then regressed significantly between 20-24 months, no eye contact, didn't respond to name, no engagement, lined objects up.... textbook autistic traits.

Purple Ella is worth looking up on YouTube. She is autistic as are two of her children (both girls).

The BBC also has a podcast called 1800 seconds on autism: both presenters are autistic, one male one female. It's always an interesting listen. There have been some more episodes recently that I need to catch up on (though I think generally it's more focused on autistic adults than on children).

The Barry Carpenter book that @Niffler75 mentioned is very good (it's actually edited by Barry Carpenter and has chapters from academics, parents and autistic girls themselves).

The brutal truth is there's no point looking for somebody to relate, each child will have their own version of it, no 2 are alike.
There is a cure for cancer but there is no cure for autism, however mild or severe it is. The truth is that you can only teach a mind that is able to be taught, severe autism will be able to be taught with great difficulty and success. I find all the promises of ABA, Hanen etc a waste of time, if the child's mind is unable to learn, no matter how much material you send none will get registered.
Enjoy your child for the child they were created to be, and when they can no longer be safe to themselves or their surroundings, let social services take over including taking away to a mental home if needed.
Autism is a crap disease, amongst the worst, it stole me of my child, the joy of him growing up and our freedom as his parents as we grown up.
Try and squeeze as much joy out of this life as you can. It's hard, we are going through it and so many others will have their own versions of their pain.
As I said, the brutal truth...good luck.

It may be the truth for you Harmos, and I'm sorry if that's the case - but it's certainly not the case for all of us. There are huge variations in autism and there are a lot of autistics with very profound support needs who still have a very happy life and bring joy to their families. There are also autistics with lower support needs for daily life but severe mental health challenges, others who the world might just see as "quirky" because they have found (or built) a niche where they fit and can be productive and happy.

I do totally agree with not trying to force any particular learning approach on your child. You just have to try to find what works for them - what engages them - and go with that. There is a nice YouTube channel called "Nurturing Neurodiversity" that makes it very clear that it is always worthwhile to presume that your child can do things. Act as if they can. If they can't, nor harm done. Her child Dexter really struggles to speak. Experts assumed that his receptive language/communication was also impaired, but actually as he's got older and has access to AAC and his parents are learning better how to use it, it turns out that isn't true - his ability to learn and his receptive language actually seem pretty good to me. But clearly speaking is (and may always be) a challenge, and maybe a challenge too far.

All you can do is try to understand your own child as a unique person as well as you can, and help support them to become the happiest and best person they can be. I think the secret is to read and listen to as much as you can. Not just the happy stuff, not just the sad stuff. And slowly (if you need to) you will plot your own way through it that will work for your family.

LightTripper I am familiar with Dexter. Also Coming Home to Autism (Dylan) and Autism Dad (Ashley) also who I find has the worse case to deal with. As you say there a whole variation how Autism can persist. Dylan for example I won't say has autism, that he is just now quirky. Ashley and Dexter definitely have severe cases, although Dexter is making progress, but I can not see Ashley making the same.
I agree, chose what works and go with that. The child is already not developing typically, could end up being just a delay and all rosy in few years, could be for life and substantial adjustments needed, nobody can tell. So that's why I say enjoy the child as far as he/she can be, until a point new adjustments may be needed.

I am pretty sure Dylan has a diagnosis. His autism is different to Dexter's for sure, but he's also a much older child.

I don’t think Dylan’s autism is a matter of opinion. He’s about 10 now and I think he was non-verbal until around 5yo. He still has issues with anxiety, so much so that his parents have found him a new school and are moving to a new area. That sort of upheaval does not happen for a child that is just ‘quirky’.

All children develop and change. As they grow older they learn new skills and coping mechanisms. It doesn’t mean they are no longer autistic.