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Life with ASD

(10 Posts)
gaelle79 Tue 07-Mar-17 12:09:22

Hi everyone,
I’m a single mother to an adorable 16 months old girl born with mild IUGR.
She’s showing multiple red flags for ASD (and/or GDD) and I’m trying to cope with the idea that my only child is probably SN.
In the meantime, I’m in the process of getting her evaluated and helped in the best way possible.
I would really like to have your feedbacks about your DC with ASD, especially girls.
I read somewhere that ASD is way less common in girls than boys but most severe and more likely to be associated with intellectual disability.
When I try to find something about teenagers or adults with ASD, I always end up on people with Aperger dx. A lot of them can function in society and have a “normal(ish)” life but what about the other ones, the majority of ASD kids? What are their perspectives? Will my DD be able to talk, to go to school, to live independently?
Can you please tell me how your children are doing?
She is my baby and I love her and will always love her more than world can describe, no matter what but it’s so hard right now. I had so many hopes and dreams, worked so hard all my life so my child(ren) would have a perfect life, all the opportunities in the word. I can’t stop crying

AntiQuitted Tue 07-Mar-17 12:50:48

The argument that girls are more severe is more due to only severe girls being picked up not that it is less prevalent.

I have a 5 year old son with ASD and a speech delay. I had suspicions from about 18 months. At 2 I was certain and sure he had classic autism so little was his understanding. He was diagnosed at 2. I would say from about 16 months for a year he made almost no progress, then started up again, though fairly slowly. He's currently in mainstream school, needs no additional support as yet and has no learning difficulties in that he's doing very well learning to read, write and do maths though his speech is behind, his ability to understand is patchy etc etc.

What I'm saying is that it's not necessarily possible at a young age to tell how things will pan out. I went to an autism coffee morning at ds's school and he was the only one who was diagnosed so young. A speech/language/communication delay is part of autism. In the past it's what separated an Aspergers diagnosis out in that with Aspergers there was no speech delay. Though of course speech does not necessarily mean communication, just as lack of speech doesn't necessarily mean inability to communicate.

I feel I'm waffling now. When I was in your shoes it was incredibly difficult because part of it is a waiting game and the other part is that life will no longer be as it was. Using strategies with ds2 has become a way of life. But it's taken me time (and anger and depression) to come to terms with that and I didn't actually believe others on here when they told me that you do come to terms with it and the new reality.

readyornot2011 Tue 07-Mar-17 13:46:18

I don't have any advice sorry but just wanted share as feel the same... since DS 2.5y check it's looking more likely that his lack of speech is actually due to (hopefully mild ASD) since then life has been a whirlwind of appointments, googling and increasing anxiety. I'm not an anxious person by nature but it's difficult to keep perspective when it comes to your kids. I got myself in such a state (too anxious to sleep/eat) my husband took me to the GP and I'm now (much to my shame) taking anxiety and sleeping meds... but they're helping.
The good news is that since we have 'realised' (still no official diagnosis) and approached things differently he has made lots of progress; pointing, using a spoon, understanding more speech, matching pictures, out of high chair and cot.... all in about 5 weeks. Part of that was we stopped making the excuse 'we'll do it when he learn to speak'
I'm still heartbroken and anxious for my little boy, but the progress he has made is all the sweeter.

Anyway, tell people how you feel, ask for help where you can, talk to your GP, look after yourself as much as possible... your daughter hasn't changed, you've already had 16months to get to know her and how she operates and now you're going to understand her so much more she'll make maire progress thanks to your help.
Take care

Friolero Tue 07-Mar-17 17:50:17

I have a 5yo DS with autism, learning difficulties and a physical disability. He's doing really well, is in a special needs school and thriving there. Whilst his needs do make life more challenging, it's really not all doom and gloom - he's a lovely, happy little boy, very chatty and constantly making me smile and laugh.

I think I read your other thread (if it was you who also posted your concerns on another board?), and I do wonder if you're worrying too much about things that are quite normal at your DD's age. Not walking and talking at 16 months really isn't very unusual at all. I have two other NT DCs who were both late walkers (18 & 19 months) and my youngest DC was barely talking when he turned 2 and then it all just happened really quickly. She's still so young still, I'd try not to worry too much just yet.

gaelle79 Wed 08-Mar-17 09:13:22

Hi Friolero,
I’m sorry that your son is struggling in anyway; the same is true for any of the PP’s DC.
It’s so unfair and I admire your courage and your optimism.
Yes I posted about my DD’s delays. And I know she’s still young but she’s so behind in so many ways that it’s becoming more and more obvious that she has an underlying condition. I’m thinking ASD because she’s at 6/7 on the m-chat:
-She fails all the pointing items (can’t point to request, can’t point to share, can’t follow a point),
-She has 0 consistent word! I thought she had mama and dada and then realized she says mama and dada all day long no matter if I’m around or not. She can repeat mama for minutes in a row!
-She has poor receptive language. Only gets “give”, “come” , “bye bye” and “take”
-She can’t walk
I’ve been on a million posts and blogs about late pointers. It turned out, 90% of them where on the spectrum. The cut off for NT children is 15 months. Less than 1% of NT children will start pointing after 15 months.
So even with all the optimism I can find, it’s hard for me to believe she will be that unicorn 

AntiQuitted Wed 08-Mar-17 09:35:14

ds2 scored 16 on the MCHAT... though I still asked on here if it meant he would be autistic! I actually hadn't known pointing was such a big deal and then I saw babies everywhere pointing. It used to make me feel really angry inside that this fact wasn't widely known as a critical skill.

zzzzz Wed 08-Mar-17 12:23:46

You can teach her to point. You can teach so very many things that come so effortlessly to nt children. It takes a lot of time, but who could be more invested than you?

Ds has autism and a very severe language disorder. He didn't call me mama till 4 and used "no" for both yes and no grin.

He is 11 now. He attended ms primary and has just started secondary at SS. He can read, write, do basic maths (a couple of years behind), tell jokes, swim, wash with a bit of directing, go to the loo alone,.....he's just lovely. blushsmile.

It's a different path, not a dead end. I like to think of us as pioneers because we have no idea where we are going.

Goldmandra Wed 08-Mar-17 21:17:05

I have two girls with AS and I cried for months when the older one was diagnosed. I don't need to cry any more. I have adjusted my life expectations just like we have to do when we are grieving a loved one and the new future feels fine.

Nobody could look at your DD now and say she will or won't be able to function in a particular way. Every child takes their own very individual path. Some children are non-verbal for years then suddenly start speaking and are incredibly articulate.

I think you need to step away from the statistics and stop worrying about how your child will compare to others. Watching her grow and develop will be just as thrilling as watching every other child and, although you may celebrate each small achievement at a different time from other parents, they all still feel just as sweet when they happen.

Enjoy her as she is. Her diagnosis won't change her in any way flowers

Pleasejustgetdressed Fri 10-Mar-17 05:54:32

Even only half a percent of NT babies point after 15 months that would still be literally millons of babies. Pigeon numbers, not unicorns.

outputgap Fri 10-Mar-17 10:36:10

You might like to look up the mumsnet webchat with Carrie Grant who has three (I think) daughters with ASD. There's lots of comments from mums with girls with ASD there, or rather ASC, as my dd was diagnosed with. Some things are harder for her, but she is fabulous beyond all reason.

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