I have two girls with autism
KateGrey · 09/07/2018 12:53
I have two girls with autism on different part of the spectrum. One classed as high functioning and the other low functioning. They’re 9 and 5 and both girls. AMA.
elliejjtiny · 09/07/2018 16:58
How long did it take to get diagnosises (not sure if that's a word) for your girls?
Do they go to mainstream school?
KateGrey · 09/07/2018 17:23
The eldest now 9 was diagnosed at 5. The youngest now 5 was diagnosed at 3. Both currently in mainstream but the youngest is going to a specialist school in September.
Different signs for both: eldest was more classically autistic but described as high functioning now. Lack of speech, lack of eye contact, walked and crawled early but chose to bounce around on her knees like a mini kangeroo, very little interest in people and would ignore me people. Liked her hood up a lot, very noose and food sensitive. Hated being wet. Quite rigid with certain things. Best described as withdrawn. But most of the people who work with her now she has an unusual profile.
Youngest: lack of speech and interest in others. Wasn’t interested in what was going on around her.
Both had a transition object that they took everywhere with them.
PinotAndPlaydough · 09/07/2018 17:27
Does your daughter with hf autism “mask” at school?
What advice would you give someone about to start down the diagnosis route? How did you explain to them what was happening?
We’re/are the school supportive, what additional help do they get?
Nevth · 09/07/2018 17:34
Interesting thread OP, thank you. How have you experienced your closest environment (friends, family, etc) handling the fact that they are autistic?
How is their interaction with each other?
Imnotacelebgetmeouttahere · 09/07/2018 17:35
No questions just a high five! We have 4 on the spectrum all varying severity...never a dull day
KateGrey · 09/07/2018 18:31
Eldest masks to an extent. She does have ft support at school so gets regular breaks. She’s quite strong willed so doesn’t see the need to conform as much as a lot of girls on the spectrum.
Keep strong on the diagnosis process. It isn’t always easy (our eldest opened the door for the youngest to be diagnosed so for the youngest it was straight to panel). A lot of people I know found it quite emotional when their kids where diagnosed. My youngest I found the diagnosis harder. Always remember you know your child. You’re their voice and advocate and don’t be put off by people who can’t see or understand their difficulties. Forge links with other parents in the same boat (sadly we are in an area that has very few people with Sen let alone girls with autism) but even online I’ve found it helpful to talk to people who get it. And remember be kind to yourself. For us the diagnostic process isn’t as hard as it is for some. To be honest neither girl asked much when they went to appointments. We explained we’d just be going to see someone to chat to them and when it came to assessment we just explained they’d be going to play with someone and do some games.
School has been mixed. For my youngest utterly awful. Our year has been an utter right off. We think they’ve found her lack of language a barrier and assumed because of her lack of verbal skills that her intelligence match them. They’ve underestimated her. For my older one a bit better. I think because I’m quite involved and give them as much support as I can. But I’m not the greatest fan of our school.
I’ve found a lot of friends have dropped us just because we may have to cancel days out if one of the kids is especially stressed out. I think as well it’s separated us out as our experiences are so different to theirs with kids. My family have been great and very accepting. My mum will openly admit she doesn’t always get it right but she accepts the girls for who they are as does my extended family.
I have an older dd with no issues and she gets on with both her sisters (slight rivalry with her middle sister as they’re only a year apart in age from each other). The girls with autism do interact but my youngest prefers her older sister who is quite gentle by nature. Her other sister tends to prefer her space a little more and finds the youngest a bit of a pain. Especially if she screams as she utterly hates noise.
@Imnotacelebgetmeouttahere somedays I dream of dull days 😀 I love them all to bits but do worry about what their future will look like. I try to not think too hard about that.
Imnotacelebgetmeouttahere · 09/07/2018 18:49
Same... it dawned on us we will be doing this for life
Nevth · 09/07/2018 20:07
Thanks @Kategrey - very much appreciate your response. One of my friend's kids has just been diagnosed with autism. May I please ask for advice on what to do as a friend to be helpful? I want to support without being intrusive or in the way.
PinotAndPlaydough · 10/07/2018 16:18
Thanks for your answers, I have some more questions if that’s ok.
Do you make/encourage them to do things they find hard? For example if they didn’t cope well at birthday parties would you encourage them to join in and interact or leave them to do it their own way?
How do you deal with behaviour that others find unacceptable? Do you tell them off, make them say sorry etc? Do you ignore it or excuse it because they can’t help it?
Is there much support outside of school? Special groups etc?
Have you ever not been believe by professionals?
I am due to see the gp next week about my eldest and I’m terrified because the child that they might see and that the school see is very very different to the one I know.
imip · 10/07/2018 16:27
Gosh, snap op! I have 2 dds with ASD aged 10 and 6. I have another 2 NT dds also.
KateGrey · 10/07/2018 20:24
Depends on age and event and if it’ll benefit them. We’ve gone to family parties and my youngest has sat on the path in the garden building pebble castles. But she’s present. I suppose for us it’s about gently taking them out of their comfort zone. We encourage interact when they’re comfortable and engaged. I know my girls are children with autism but they’ll grow to be adults with autism. How old is your dc? We found especially with my eldest it got easier as she got older. Both have a short fuse but we were able to talk things through more and she was able to explain what upset her. Specifically about birthdays I’d gauage the situation and mood. It helps if you also know if there’s any particular triggers. And ability to engage. People with autism see things really differently and whilst you might think they’re unhappy or they’re lonely quite often that’s more how we think they feel.
Behaviour wise depends on the behaviour and situation. If during a meltdown they accidentally kick someone I don’t generally tell them off. But we don’t tolerate physical aggression and being too mouthy (though youngest can’t talk and tends to scream).
Support wise it hugely depends on area. There’s a little bit locally where we are but not a huge amount. We tend to go further afield or I rely on people online. Don’t be afraid to go along to groups. I always felt before the girls were diagnosed that I was a fraud so felt awkward. But do go. It’s important to not feel isolated and often parents locally know the systems well and can connect you and advise you.
Thankfully our professionals have been really good. There have been a few raised eyebrows about additional issues (i think they assume I’m neurotic but this is the school). Go armed with information, notes, videos etc as it’s not uncommon for girls to hide it at school and then explode at home.
If you ever want a chat do pm me 🙂 and any more questions do ask away.
@imip it’s nice to see another parent who has girls. We only ever come across (unless online) boys.
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