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So isolated - I'm the only person who can see that something's not right!

(51 Posts)
WillWeBeOk Thu 10-Jan-13 18:18:02

Hello, this is my first time posting. Just hoping to hear from anyone who has been in the same position as I am, as the loneliness is overwhelming me.

My beautiful and long-awaited daughter is 8 months old and for the last month she has been showing more and more worrying signs, all of which seem to point to autism.

She has stopped smiling socially- she used to be a vey flirty baby and now you have to work extremely hard to get a smile or a laugh out of her. At the same time, she often smiles randomly at objects or the corner of the room.

Her eye contact has drastically diminished. If I hold her on my lap, she twists and squirms to look past me. On the very rare occasion that she looks at my face, it's always at my mouth. She gives me zero eye contact during nappy time when we used to play games and sing songs. When she wakes up in the night or after naps she will not even look at me or acknowledge me at all. It's as though she doesn't recognise me.

Other things that she used to be able to do, but doesn't now:
Babble with consonants;
'Converse' back and forth
Respond to her name
Respond to our voices at all sometimes
Show joint attention, checking in with us when playing
And lots more. Also she flaps her arms strangely.

I'm not really asking you guys 'Is she autistic?' at this point as in my heart I'm pretty sure that she is.

Rather i am just trying to find someone, anyone, who has been in this situation of being sure thy something is 'off' only to have everyone around them scoff.

Friends and family; ' all babies are different' 'she's just being moody' 'she's just growing/teething/got tummy ache/sleepy etc etc etc'
Hv and docs (after 30 secs with her) 'she is absolutely fine, look she just made eye contact with me! Let me check her heart-rate, yes she's in perfect health'
Husband ' why are you trying to make there be something wrong with her?'

And the most isolating at all, from everyone; 'sr is just acing like this because she is picking up on your anxiety! Take some antidepressants!'

Wrong, wrong, wrong - I was perfectly happy around her UNTIL I started noticing these differences - I was not upset or anxious before. Also, when she was younger she would look at me with an empathetic and concerns expression if ever I did seem upset (eg once arguin wig husband) whereas now she does not seem to pick up on my facial expression or one of voice at all at all.

Sorry this turned out so long. sorry lots of typos too! Please help me somebody. How did you cope when you knew something was wrong and everyone else in the world denied it?

Thanks for reading.

ArthurPewty Fri 11-Jan-13 09:37:02

DD1 failed two distraction hearing tests at 8m and 10m. She passed a hearing test in the hearing centre with proper equipment at 13m perfect - because she had ASD, not a hearing problem.

This is the age, 8 months, that it starts to stand out, and a baby who has ASD can be noticed to be different to other babies - if people are paying attention.

WillWeBeOk Fri 11-Jan-13 10:12:56

Thank you so much everyone who's replied, I'm overwhelmed by the help and support I've received from you! It's still a situation I had bein in but hearing from others makes me feel less alone and more importantly, less insane.

Eliza22 your son s

WillWeBeOk Fri 11-Jan-13 10:22:09

Sorry clicked too soon ....
Your son sounds adorable and your success story gives me hope that things could turn out ok.

Thanks to those who said maybe she isn't autistic or that the signs might be something else, however I need to add things like she has no interest in mirrors or other babies, she hasn't got a hearing problem because she can hear things like the tap running or someone walking down the stairs etc. she seems to just tune out human voices if you know what I mean.

Yes I've heard good things about more than words, I wonder if I can get it from the library? I also feel that I would need to hide autism books!

Funnily enough my daughter is cows milk protein intolerant (I think, from the horrendous nappies and other symptoms she had when she was younger) so I cut all dairy strictly from my diet when she was 3 months old and she has never had any dairy since then either through breastmilk or her own solids. She hasn't really had any gluten in her solids either although I haven't cut it out of my diet, I don't know whether that passes through breastmilk?

Thank you for saying that I am not to blame for her c

WillWeBeOk Fri 11-Jan-13 10:26:21

Dang posted too soon again, I am rubbish with thes touch screens. I had the impression that regressions happened after 12 or 18 months whereas I have noticed differences in my daughter from about 6/7 months which is why I wondered if the fillings were the cause? She was always fussy and a bad sleeper but from months 2-6 she was smiley, social, instigated interactions etc and that side of her has slipped away considerably.

Thanks again to everyone who shared their experiences. I hate that my husband and I don't see the same thing but on he

WillWeBeOk Fri 11-Jan-13 10:27:14

On the plus side the fact that he thinks she is normal means that he is treating her normally and that must be a good thing for her x

ArthurPewty Fri 11-Jan-13 10:36:28

you can definitely have a regression before 12 months. DD1's was at 14 months, but you can definitely have them before then.

My DDs werent intereested in mirrors or themselves or other babies or cooing along with mommy, or anything like that either. DD1 didnt turn to her name, DD2 didnt turn to anything, let alone her name.

I noticed a lot of differences in DD1 from an early age - i never understood why parenting her felt like an enormous black hole, sucking the life out of me. When i look back on the things i wrote on other forums (and was pilloried for, i must be a bad mom for feeling that way, i dont deserve my child, etc etc), i see that its because that reciprocation wasnt there - that two way communication. From early early on.

So, if i were you i'd keep on it, keep careful notes, keep video, and keep on pushing. Your gut will not lead you astray.

bjkmummy Fri 11-Jan-13 11:45:04

Just wanted to say hello. Best advice is trust your instincts. I knew the moment I held my younger son seething wasn't quite 'right' he was a twin plus I had an older son but I just knew. As it turned out my elder son was autistic and was dx at 5 - had no idea about that and it was a shock. My younger son was not dx until he was 7 years old after adopting the watch and see approach. Keep coming in here for hand holding as you may find yourself on the wait and see path as she is so young at 8 months old. Definitely getting her hearing checked. My older son needed grommets and I thought that was what was causing his problems but that wasn't the reason. Most of us on here have been through quite a few things and have lots of experience so matter how silly or unimportant you think your question will be ask away as someone will be able to advise. You are among a fantastic knowledgeable and supportive group here who will help you along this journey

WillWeBeOk Fri 11-Jan-13 14:57:40

Leonie I know what you mean about the lack of reciprocation, it was great when my daughter came out of the newborn phase and started interacting because spending time with her was so rewarding, now that she interacts less things feel a lot more of an effort and time sometimes goes by so slowly if you know what I mean? I still try to enjoy doing the things that she does like and respond to, eg ticking with a feather, pretending to gobble her up and steering the pushchair in all directions while whistling often get a good chuckle out of her. And she does give great eye contact when feeding (solids not breastmilk) so we have some bonding over that, although it is a bit dad as I suspect she's only interacting then because I have something she wants ...

WillWeBeOk Fri 11-Jan-13 15:01:56

Bjkmummy thanks for the welcome, I actually feel very comforted knowing that the people in this group are holding my hand! Although I have very loving and supportive family and friends in real life, I know that they are just humouring me rather than really understanding what I can see in my daughter and how I feel about it.

How do your boys get on now? What helped you cope during your long wait?

MummytoMog Fri 11-Jan-13 16:26:34

There is a developmental stage at around eight to nine months where they are more interested in their toys and other objects rather than people. So although it’s worrying, a change in focus is normal. Trust your instincts though and keep pushing for referral.

I have one of the Hanen books and it’s brilliant. Keep meaning to buy More than Words as well, at the moment I have the one aimed at preschool teachers because Nursery have more problems communicating with her than we do, and it has brilliant stuff in it about the stages of communication development and assessment sheets and things.

youmeandtheoldzifferzafferzuff Fri 11-Jan-13 16:41:02

Hello Willwebeok,

I don't post all that much but lurk a lot. My son is older (3) and currently waiting for assessment for ASD - lots of red flags that were picked up at his 2 year review, but it has taken a long time to get the ball rolling.

I thought I might be able to reassure you as I have the same problem with my husband - he doesn't think there is anything to be worried about and he has said I'm looking for problems where there aren't any etc. I was very concerned that the paediatrician would not take my concerns seriously because DH and I were giving contradictory answers. I also wanted my husband to have a chance to put forward his interpretation of things so that he didn't feel I'd misrepresented our son's behaviour etc.

At the first appointment with the paediatrician I explained that I was worried about DS and DH wasn't and she assured me that this is very, very common. She said it is extremely rare for both parents to be at the same stage in the process so whoever you see will be very used to this - they are trained to observe and ask the right questions so I'm sure your concerns will be taken seriously. Our paediatrician was very blunt with us and said that there are aspects of our son's development which aren't normal for his age, so that was pretty black and white. My husband still doesn't agree, but at least he isn't objecting to further assessment.

I hope your appointment comes through quickly. We were told that the waiting list was about 16 weeks in our area and we got seen in about 12 weeks (but frustratingly they count the weeks from the date the referral has been accepted rather than when it was made, so that added a few extra weeks).

ArthurPewty Fri 11-Jan-13 19:11:03

I used too say that both my dds were 'using me as a platform to launch from' - sitting on my hip, looking at the world.... and ignoring me.

I was never addressed by name until 2y w dd1 and 18m with dd2.... they just assumed I was a part of them, not a legitimate individual...

mariammama Fri 11-Jan-13 22:39:55

Blimey Leonie, 'a platform to launch from'. You've just explained something I've experienced for 9y but never understood well enough to describe. And Eliza, you're so right about mothers with lots of dc having more 'idea' of what's genuinely normal than most professionals.

Willwe, i agree with everyone who says a full hearing test is essential, even though your dd seems to hear some things ok. You can get partial losses which distort voices more than other sounds.

Also, while your dd might well not have ASD, true regression is never something to be ignored and i think you'll find the doctors listen, even at a young age. Epilepsy, allergies, vision problems, funny metabolism, rare genetic problems, simple tummy ache... there are a million and one possibilities (many not too serious) but "mum imagining it all" is fairly low down the list.

autumnsmum Sat 12-Jan-13 08:03:03

Hello just wanted to say trust your feelings this may sound daft but with dd 2 my dp looked at her at six weeks and commented on her lack of smiling and mentioned the possibility of autism as our son has it . She was diagnosed with autism at two years ten months .

WillWeBeOk Sat 12-Jan-13 11:12:11

Thanks everyone. I know I can be honest with you so just wanted to say how I feel even though I feel terrible for feeling it.

Basically i feel like I cannot be happy around my daughter. I'm asleep at night dreaming and thinking that maybe it's not that bad and then first thin in the morning she wakes up and looks through me with a lazed expression, no response when I talk to her, not noticing me at all and I come crashing back down again. Then I feed her, do nappy, get dressed, sing songs, all the while with her avoidin eye contact and not even acknowledging me at all. Then relief as I put her down for a nap or I've her to her dad while i take a shower - it's easier to be away from her instead of with her and that is breaking my heart.

Some of you have said it's good that I am aware or her signs as early as 8 months but I wish I wish I wasn't as it just makes me feel like I've lost my little girl, we had a precious 7 months bonding and showing each other love and I miss ''us' so much, I feel nostalgic for the pregnancy and the birth and find it almost unbearable to look at her old photos and videos. Every moment I spend with her not reacting any more - which is 95% of the time- is another stab in the heart, I feel like I am already grieving for the daughter I had even though she is still here in the flesh. It is a nightmare that won't go away sad

ArthurPewty Sat 12-Jan-13 11:18:48

You're mourning a loss. It's bound to feel that way, tbh.

Make sure you document these changes with VIDEO - incontrovertible proof that even a paed cannot argue with.

mariammama Sat 12-Jan-13 18:15:56

The bit you seem to be really struggling with us the loss of mutual sight and sound 'recognition' cues. There's some research suggesting that the core impairments in some people with ASD are 'internal clock' related, and in others it's about processing of vision and sound.

I mention this because if she is autistic, and (for example) the bit of her brain recognising smiles is on go-slow... her bond to you would be intact but her mummy-response signs would be out of synch. Like skype-ing someone you love

ArthurPewty Sat 12-Jan-13 18:17:22

OP< have you got anyone in real life you can talk to? Anyone to confide in?

If you give us an idea where you are, i'm sure a lunch could be arranged! I'd be happy to meet up and just be there to listen. x

WillWeBeOk Sat 12-Jan-13 20:43:23

What a kind offer! I'm in Worcester, West Midlands. Would be great to talk to someone x

ArthurPewty Sat 12-Jan-13 20:47:25

I'm not far away, am in Brum!!!!

WillWeBeOk Sun 13-Jan-13 11:29:36

Leonie we are pretty close then! Are you involved in autism West Midlands? I want to contact them but not sure they can help me because my daughter is so young and not diagnosed. I just really need someone to talk to as I am in such a bad place watching her signs, losing our relationship, blaming myself because of the fillings and failing to convince anyone else that something not right. I have never felt so lonely and scared for the future.

FrustratedSycamoreIsNesting Sun 13-Jan-13 11:57:52

Hi wewillbeok please do not blame yourself. You're seeing, and are aware of these signs whatever they indicate and imo that is a positive thing. my dd "changed" at 6 months, it wasn't exactly regression, but it was more of a "something's not right" and I stuck my head in the sand until she was gone 2 when her issues were too obvious to ignore.

In hindsight I should have been demanding the health professionals to see what I could see. But I didnt, and will always blame myself for that, but I don't blame myself for her DXs, i firmly believe that they would be there whatever I did or didn't do.

Dd finally got her ASD dx at 3.10, and I cried with relief. Relief because despite the other DXs deep down I knew there was something else. And relief that finally someone had said I wasn't imagining it.

Your dd is young, find out as much as you can, and put as much in place that you can. If it turns out that your dd isn't ASD, you won't have done her any harm.

And importantly fight, and keep fighting, to get someone to listen to you.

ArthurPewty Sun 13-Jan-13 11:58:25

yes, we renew membership every year, attend functions (if we can), etc.

Contact them anyway. The wont be able to assign you a family worker until you get a diagnosis, that's true, but they will be there to help you with information and support etc.

And PM me. Seriously. I know Worcester quite well, well, St Johns, and the town, cos husband's nan lived there til she died.

MummytoMog Sun 13-Jan-13 13:52:02

One book I found really really useful was 'Engaging Autism', which discusses the Floortime approach and encouraging interaction. We were already doing some of this with DD to good effect on her eye contact and interest in interaction, t once I read the book, it made perfect sense and I knew how to do more. I nearly didn't buy the thing because I'm still not sure DD is on the spectrum or has another language or social communication disorder, but who cares so long as it helps. Maybe just hide it from your DH xx

ilikemysleep Sun 13-Jan-13 17:44:02

My eldest son has aspergers and his reciprocity is truly awful - I work in autism and I would put his reciprocity in the 5 worst kids. He was always that way. It took me until he was 9 to persude DH that I sw autism, he wasn't fine, he wasnt gpoing to grow out of it...
Agree with mariamamma - we are incredibly important to ds although he doesn't often show it. We are his interface with the world. We understand him, we interpret for him and we are his 'safe space'. He doesn't do cuddles - well, incredibly rarely - but he likes a play fight, and this is how we connect, on his terms. He needs us, really needs us, far more than his NT brother and sister, even though in some ways he gives back only a little in terms of what he shows - I know without a doubt that I am the most important person in my son's world, with dh a close second, and that he loves us....he just doesn't show it in NT ways.

Bug hugs. I don't care if Mumsnet doesn't do them, we all need them sometimes!

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