to think just because I'm coping doesn't mean DD doesn't have autism?

(35 Posts)
livvielunch Sat 12-Dec-15 22:47:40

DD is 3; she has delayed speech and many traits of autism which are under investigation by a paediatrician. For example:

She is sick over strong smells so can't use public bathrooms
She has a very limited diet and cannot eat out
She carries a bag with her 24/7 and checks the contents around 15 times p/h
She plays in the corner turned away from others at nursery
She won't eat, drink or go to the toilet unless told to by me
She absolutely breaks her heart if she thinks she's been told off
She regularly completely blanks everyone but her baby sister and I
She hates loud noises and things coming towards or behind her so struggles to walk outside
She has never played with another child
She has complicated routines which must be followed to the letter including reading the same book and making the same comments about the story/pictures 10x daily and an exact script for bedtime
She has never hugged or kissed anyone besides her baby sister
She has 17 hour days and is still up 3/4 times per night

I could go on. To an outsider she's a happy little girl who only wants to play with her mum and baby sister and particularly family members have commented that because she and I are so happy they don't think there's anything to worry about or investigate. Aibu to think that just because I am coping and DD is mostly happy, it doesn't mean she doesn't have autism?

DixieNormas Sat 12-Dec-15 22:53:09

No it doesn't mean she doesn't have autism. Ds4 is very happy and we cope fine but he does still have autism.

hedgehogsdontbite Sat 12-Dec-15 22:56:49

No YANBU. Given the behaviours you've listed it would be daft to not get her assessed. She may be happy now but things can change, especially when she starts school. Better to get a head start on it than wait until after it becomes a problem.

Dinosaursdontgrowontrees Sat 12-Dec-15 23:02:14

My dd is also 3 and we think she has autism too. My dd is relaxed, confident, laid back. I get of lot of hmmconfused looks when I tell people she's waiting for a diagnosis for autism. Every child is different! Sounds like you're doing a great job!

SaltaKatten Sat 12-Dec-15 23:09:29

My dd is 7 and being assessed for aspergers. She copes very well indeed and is academically gifted but didn't start talking until half way through reception. Because people don't see all the quirks and idiosyncrasies and because we adapt to her in so many ways to help her cope, they think we're just daft. But they don't see her chewing on everything obsessively, refusing to eat anything except a few types of food (she will gag on other foods), the need to have all teddies, little figurines etc lined up just right to be able to sleep etc. You know your child the very best. It's hard when others want to butt in with their own opinion. I think sometime they say it to make you feel better though, "Oh, I'm sure she'll grow out of it" and such like.

steppemum Sat 12-Dec-15 23:15:46

there is a term for this. It is called scaffolding.

You scaffold her really well, so that she is able to cope with daily life well, and be relaxed and happy.

If you removed all your scaffolding, eg you handed her over to a good reliable experienced childminder, who didn't know any of her particular quirks, or needs it would be a disaster. That shows you what her needs really are.

DixieNormas Sat 12-Dec-15 23:17:51

I think sometimes family can be in denial, some members of ours were. Luckily ds4 was dx at around 2.4 so we didn't have to listen to them for too long

noeffingidea Sat 12-Dec-15 23:24:46

My daughter was diagnosed at a similar age. I coped well with her,because she was quite easy to look after (apart from waking at nights sometimes). As she got older her behaviour became more challenging. Autism tends to get more noticeable with age.
My advice is to not worry about what other people think. Just concentrate on getting the help your daughter needs.

YouTheCat Sat 12-Dec-15 23:25:06

My dd was 18 when she got her diagnosis.

We did the whole scaffolding thing really well until the teenage years when things got complicated.

livvielunch Sat 12-Dec-15 23:28:08

That's precisely it, steppemum. Even if I handed her over to her father it'd all fall apart. She recognises that he doesn't know how to do things the way she likes so mostly she completely disregards him

ReallyTired Sat 12-Dec-15 23:28:16

I am sorry that you are going through the stress of developmental delay. It is frustrating having no diagnosis. Autism is really hard to diagnose and it often takes months with a team of professionals to get the correct diagnosis so that the child can get the right help.

My son was assessed for autism and we discovered that he had very severe glue ear. Many classical autistic behaviours are exhibited by lots of young children with major speech delay. A child who has limited communication skills is very reliant on routine and will find a change in routine distressing. They will find it hard to make friends. My son struggled at nursery and his nursery were convinced he was autistic.

Is your little girl at nursery? What do they think? It sounds to me as if your daughter does need help

livvielunch Sat 12-Dec-15 23:36:07

She started nursery in September. Her teacher (it's a nursery school so she has an actual teacher) has noticed that she won't eat, drink, go to the toilet, ask for help or touch anything messy and that she plays in corners alone and isolates herself. I understand a lot of her speech but to others it's pretty incomprehensible and even if someone else could understand she wouldn't want to communicate with them because they wouldn't communicate in the 'right' way - by following the same play scripts.

Mmmmcake123 Sat 12-Dec-15 23:43:11

Comments from others are said to reassure you. It's not worth overthinking them as you are having her assessed.
If anyone is slightly disputing why I would just keep it simple, speech delay. Anything more and they will keep giving examples of how normal each thing is, i.e. just a bit shy etc.
Good luck hun, sounds like you know your lovely little one better than anyone and have her best interests at heart xxx

MascaraAndConverse89 Sat 12-Dec-15 23:46:42

My DS aged 2 has a speech delay too. He'll be 3 in February.
He's also been referred to see a paediatrician. He could have Autism too as the HV pointed out some things he does that could indicate he has Autism.
Have you potty trained your DD? If so, how old was she when you did it? I really want to give it a go with DS but not sure if I should hold off a bit longer.

zzzzz Sat 12-Dec-15 23:48:29

Just ignore them. You know her. My ds functions infinitely better if everything is provided that he likes/needs and your life would suit him to a tea by the sounds of things.

Sounds like you are doing a wonderful job. That sort of solid home will allow her, if encouraged, to broaden her world. Help her do that if you can.

At three swimming lessons and music therapy were great activities for us. smile

OgreIt Sat 12-Dec-15 23:56:17

We get that sort of comment about our ds, who was diagnosed at 4.11. I think people are trying to be kind but it's not helpful. I know it's the scaffolding we created for ds that meant his ASD wasn't that noticeable to the non-experts when he was younger (because he rarely had meltdowns). It's much more obvious now at 5.5. Her behaviour does sound like it warrants an assessment to me so try to ignore the well-meaning advice, brace yourself for the 'you worry too much' type comments, and continue pursuing the assessment.

outputgap Sun 13-Dec-15 00:09:22

I think Dixie hits it on the nail. We haven't told lots of family about dd's pending assessment because I know they'll treat it as my own weirdness. In fact, the process was suggested by two nurseries. I'm not making it up! But she is completely adorable, affectionate and polite with her favourite grown ups. (Although to be fair, I knew so little about autism that because she spoke like a tiny old precise woman when she was 3, I thought she couldn't have autism. So maybe I get why people look bemused at me.)

FanjofortheMammaries Sun 13-Dec-15 00:09:50

No it doesn't mean she doesn't.

Dd is the happiest child I ever met. I generally cope like a mofo.

She has severe autism smile

FanjofortheMammaries Sun 13-Dec-15 00:11:32

This happens a lot when kids are small I think. We were constantly told there wasn't much up with DD when she was 3 or 4. I'll questioned her diagnosis. Now she is 9 and non verbal people accept it, strangely.

Main thing to remember is it doesn't really matter what anyone else thinks as you know the truth.

FanjofortheMammaries Sun 13-Dec-15 00:12:04

I'll=ILs

FanjofortheMammaries Sun 13-Dec-15 00:16:18

Also things change so much from 3.

At 3 DD wouldn't look at us or engage at all.

Now she is like a huggy limpet saying "love oo" and demanding constant attention.

Have known other kids who just screamed all the time at 3 and then became high functioning.

So don't despair or try to predict the future.

LonnyVonnyWilsonFrickett Sun 13-Dec-15 00:19:52

The best advice I never got was not to wait until DS was diagnosed - to treat him, and to encourage nursery/other caregivers, to treat him as if he was already diagnosed with autism. It can't hurt DD for you to approach life as if she does have autism. Although tbh it sounds like you are supporting her beautifully. But it might help some of the other people in her life if you adopt this approach.

Maryz Sun 13-Dec-15 00:30:19

YANBU.

ds2 was diagnosed with ADHD at 14, and the main reason he wasn't diagnosed earlier was that we were coping so well. The reason we were coping is that I had dealt with ds1 and knew what didn't work, and knew how to step away from confrontation etc.

But him not being a problem at home didn't mean he didn't have ADHD.

Ignore relatives, keep your great relationship with her and pursue a diagnosis. And remember, you understanding her will be the most important thing in her life flowers

Handywoman Sun 13-Dec-15 00:33:38

You are doing a fantastic job, OP, in very challenging and exhausting circumstances. The minutiae of how your day is orchestrated is beyond comprehension of most parents.

I do think family members sometimes think than it 'steals' from the innocence of their child to pursue a diagnosis. As if it robs the notion of the child as innocent and perfect.

When the reality of all parenting is actually much more messy and hard. And massively more so with children with such a completely different level of needs. I have been there and it is tough. And the assessment/diagnosis journey is long and tough.

At some point you'll be able to step back and take a breath, but not just yet.

In the meantime absolutely YANBU.

DixieNormas Sun 13-Dec-15 00:52:42

I don't know if it was because ds4 was so young and they didn't know anything about autism (ils rather than my family) we had hearing test, salt and first pead appointment done by the time he was about 2.3.

I think they thought I was being a bit pushy about it but I'd known for a long time by then , certainly from about 14 months when his speech regressed.

Like others have said things can change as they get older, we've had lots of positives in the last 6 months or so though. He has started talking, interacts with his brothers, has some imaginative play now

He is very affectionate and loving with his immediate family now, it used to be just with me but he will sit and cuddle up to his brothers now. I'm still the only one who gets kisses though. If anyone else asks he will blow them one if he feels like it grin his eye contact is also much better. I think people are surprised by it, lots of them think dc with asd don't show affection or make eye contact, although it's more apparent to people now that he has developmentlying delay, they don't tend to think autism

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