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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.

SadieChanges Thu 10-Jan-13 18:28:32

Hi, I'm no expert on here as my son has only just been diagnosed at 2 , I first had concerns when he was around 12 months.
No pointing / waving / not following my point / no joint attention / babbling but no words. I spoke to my HV at 16 months but worried for around 4 months , hoping he would talk / point /wave etc.

He is now 2 years 3 months and still non verbal. Everybody said ds was too busy being physical as he walked at 10 months. I knew different although I wish I had been wrong.

I would advise writing a list of your concerns and taking to the gp rather than HV , if you aren't satisfied with their response .

WillWeBeOk Thu 10-Jan-13 19:01:56

Thanks for your reply Sadie! I hope that your son will get the help that he needs now that he has been diagnosed. Have you got good support from your friends and family?

I have also had the "she is concentrating on her physical skills!"

Well, the health visitor has reluctantly referred me to a paediatrician although she has made it very clear that she thinks I am bonkers. I will gto the appointment armed with a list, videos, everything. But I feel like it's a lose-lose situation - if they say my daughter is autisitc, I will be heartbroken, but if they say she isn't i will still worry that she is, because how can she not be, with all of her symptoms? Any one or two could be explained away but there are dozens of things!

Can I ask, did your partner ever share your concerns? And did you find it painful in a way being around your son while you were in the limbo of waiting for a diagnosis? I love my darling girl so much but can barely look at her without seeing "autism" and grieving who she used to be and the carefree bond I had with her before all of this became apparent sad

Walter4 Thu 10-Jan-13 19:03:36

My son was diagnosed asd/pd at 4 , like you I went through difficult and lonely times knowing my son had asd and everyone being totally I disagreement , my partner included. I knew at 12 months, as time went on people were less critical of me. It's really tough and very lonely, but something I am sure most mums here will agree, is very sadly common.

2old2beamum Thu 10-Jan-13 19:09:51

I think your worries are very understandable As a very old paediatric nurse my advice is if you think your child is regressing and no one listens make a fuss you know your daughter best
Good luck

Liliuk Thu 10-Jan-13 19:15:19

Hello. If you have doubts don't hesitate and go and visit Gp. They may tell you she is too young, and be reluctant to refer you. If that is the case, if you can get a private diagnosis (list available from National autistic society web). It can't hurt your daughter if you are wrong, and if you are right it will push NHS to intervene. In meantime do as much interaction as you can. Anything that will catch her attention: usually bubbles, tickles, and noisy toys are good, but you can use anything she likes. If for exemple she likes bubbles, blow some and try and wait a little bit to see if she will do anything to indicate she wants more. Even a fleeting look is worth rewarding heavily with lots of bubbles. Trust your instinct; if you are right, to earlier the diagnosis the better. Lots can be done when they are so little. All the best

Liliuk Thu 10-Jan-13 19:18:05

Oh yes and if she doesn't look, you can prompt her to look by touching her chin, and reward by blowing bubbles

kyz1981 Thu 10-Jan-13 19:20:11

My Son is in the process of being diagnosed- it was very clear he had issues but at 12-15m the pead adopted a wait and see approach- I think not because she thought nothing was wrong, but that several developmental disorders can look similar at that age so they want to wait. My sons issues did get more obvious at around 18 months and even more so at 24m- he is still only 29m and is getting more and more rigid in his ways.

It is only now that he is so behind in many ways that people have stopped saying stupid stupid things.

I went to my GP as HV were no good what so ever and I even had a hard time with him, but he referred me and then the pead referred my son at 2 to the child development team- SALT wont see a child under 2 in this area.

I did however find a great private OT that helped no-end with DS issues and every session I checked in with her with the -" this is an Issue, I am not going mad".

I still get comments from other mums at times as when DS runs around crashing and banging he looks like a typical toddler- One phrase both me and my DH used to say to people when he was little that helped a bit was- its not what he does its what he does not do that gives us concern.

Hugs - its a horrible place to be in - but trust your instincts...

SadieChanges Thu 10-Jan-13 19:28:28

Hi willwebeok I agree it is a lose lose situation . My HV tried to brush off my concerns but you know your dd best.

At the diagnosis if they had said he isn't autistic where would that have left us as he seemed to fit so much of it. He did get diagnosed so even though you know it still hits you when it's official .

My dh came round to my way of thinking but it took a while but only in summer my in laws thought he had no problems so it can make things strained as you can't discuss the issues.

My ds can be hard to manage and sometimes I get angry inside but one thing I read was they are born with it. So that tiny 1 day old ds had autism , he was never NT and I love him very much. Things just didn't go how I had planned in my head.

WillWeBeOk Thu 10-Jan-13 20:06:38

Wow, so many responses, I am really grateful to everyone who took the time to read. Sorry to hear about people who have been in the same lonely position. Of course none of us ever wanted to be proved right.

Liliuk thanks for your ideas. We can get some interaction out of our girl, she loves tickling and chasing games, rough housing and Lao games hen you suddenly appear from behind a door etc, so I've been playing those
to get some interaction. It's so precious to hear a hard-won laugh, I've been videoing it on my phone to play back when I need it.

Sadie I would love to be able to take comfort from knowing she was born with it. At the moment I am crucifying myself with guilt as my daughter seemed to be developing normally for her first few months but I had fillings done while breastfeeding when she was 4 months, the dentist, Hv visitor and everyone said it would be fine but it seems to me that she has begun regressing because of that. If only I could turn back time, I am so
distraught that my actions have ruined my daughter's potential.

2old2beamum you are right, I'm the only one who is with her 24:7 so all the tiny subtle changes are only obvious to me. I cannot ignore my instincts!

I am just trying to hold on to a few things to keep my head above water:
1. I am lucky to have her at all. We struggled with infertility and conceived her on our second ivf, the first failed cycle gave us a frightening glimpse of a childless future. Also, she was born early by emergency c-section after a ruptured placenta- if I hadn't made a fuss when triage were trying to fob me off on the phone, there is a real chance she wouldn't have made it.
2. She is adorable and her quirks are part of her, whether or not they are caused by autism. Also, she seems a happy little girl, quite joyful in her little world (but oh how I wish she would let me share in it)
3. My parents, although they don't believe at this stage that there is anything wrong, have promised that they will always be there for us and love her and give her as happy a life as they can even if she turns out to have severe special needs. They would even let us live with them.

I am struggling with trying to just enjoy the here and now instead of just marking time until we all find out for good.

mariammama Thu 10-Jan-13 20:11:59

Insist on referral to paediatrician.

WillWeBeOk Thu 10-Jan-13 20:21:40

Thanks mariamamma we have been referred but no idea how long it will take or even if they will take us seriously as she is only 8 months old! Also I feel like if my husband comes he might undermine me by saying things such as "she does respond to her name" which is true occasionally if you call her 25 times and make a silly noise, but that's not normal at all is it?
To be honest my husband is so convinced that I am only seeing things because I am mentally ill, that he would ignore or deny any symptoms at all, making me feel like the boy who cried wolf. It is so hurtful to have it suggested that I am mad, why can he not see that things aren't right with her? He is permanently making excuses - 'oh she's just busy playing' etc etc.

ArthurPewty Thu 10-Jan-13 20:26:56

They probably wont diagnose until 2 or over.

After our experience with DD1, we were referred with DD2 at 11 months, saw paed at 12 months, who wrote them that DD2 was showing clear signs of autistic disorder, they needed her to be older before it was a "safe" diagnosis.

Saw SALT at 19m, who saw issues with pragmatics and semantics of language, and then saw paed again at 23m for a review. He wanted her to go through a multidisciplinary assessment, which we did at 25 1/2 months, et viola, diagnosis made, HF ASD.

Dont let em fob you off, and you KNOW when something's not right. I knew by 8 months with both of my girls, with DD2 i knew a few weeks after she was born that "something" wasn't right. Trust your gut - it wont lead you far wrong. x

marchduck Thu 10-Jan-13 20:35:11

Hello willwebeok, welcome to the board.
That's so great that you have got a referral to a paed - and the fact that you have got it is all down to you. Your DD is lucky to have you.
It is very difficult to be alone in feeling that something is not quite right. I was concerned that my DD didn't seem to be talking much, but my DH and parents said that I was comparing her to my DS and that she would catch up in her own time. It was what I wanted to hear.
Looking back, I really wish that I had listened to the nagging voice inside me earlier. My DD had some regression and some red flags - but I was completely unaware of the implications of these. Her developmental delays were identified following her two year health check. I started to read around about this and realised where we could be heading. But my DH and parents still felt that DD would catch up in her own time. It took time for them to accept the situation, and I did feel alone sometimes because of this.
The thing is, even if your fears are realised, your DD is still your happy and adorable little girl. When this started out for us, I had no experience of ASD at all and the thought of it terrified me. Further down the line, my DD is just wonderful - so happy, quite sociable and the apple of everyone's eye. We have a great life.
Try and enjoy your lovely DD and stay on here. It can take quite a long time to get to the diagnosis stage. Reading this board was a life-saver for me when everyone else was telling me there was nothing wrong.
All the best to you and your DD.

Liliuk Thu 10-Jan-13 20:35:49

Please don't torment yourself. The fact that you are brave enough to admit that something may be wrong makes you a very good Mum. It is not your fault, it is not her fault, that's just the way it is. For ours too all seemed fine until 8 months and then it came out of nowhere...the fact that you can interact with her is great. Carry on...! Take care

I know how you feel. I 'knew' something was not right with my DD from about 6 weeks old. She just didn't react as she was supposed to.
It was an awful time and really it is only in the last 8 months that people have started to take action and she is 4.1 now!

My DD has processing issues and speech and language disorder but autism has been ruled out for now. But I know she is wired differently to other people and I have always known that.

I would just say keep on with what you are doing re the interaction.
My DD loved exactly the same games, really rough play, tickling and peek-a-boo type things. I know there were times when I didn't do it because I wanted her to react to 'normal' interaction so much and I couldn't face having to work so hard to get something that other children seemed to give so easily. But now I know that all interaction is good. And that the more she gets the more she does interact.

You are not going mad. You are not wishing these problems on her. You did not cause them. Your parenting will be different than you ever imagined, but your DD is wonderful and you sound intelligent and determined.

Oh and one more thing. I didn't stop. I told everyone I could that things were not right. Because I didn't stop and because I read everything on here and went to see everyone I could my DD is now making such progress that people are taking time out to tell me how far she has come.

And that is because I didn't listen to anyone who said that 'she will get there in the end'. It's because I listened to myself and fought for her.

babiki Thu 10-Jan-13 21:42:51

You can get a private specialist to check things over, it's great you are so pro-active. Early intervention is important and in reality it is up to parents to fight for it, unfortunately, as most professionals wait and see...My ds at the age of 12 months couldn't sit, didn't move at all and GP told me he is fine and threw in couple of stories about Einstein sad
Well I went to private physio (my husband thought I am mad) and it was the best thing I ever did; as she gave us concrete stuff what to do with him..I think it would be helpful for you, to know what can you do at home already to help with eye contact etc..so consult somebody privately.
And as for husbands; this is VERY common, my only started to come round few months ago, even now he sometimes says 'maybe everybody is wrong' etc, I remember how awful it was to be alone and isolated with the knowledge that something is not right..feel for you xx

WilsonFrickett Thu 10-Jan-13 22:21:38

You have had lots of lovely supportive posts so I am going to be a little bit different and just tell you this straight out: this did not happen because you got your teeth filled while bf. It just did not. So stop it, stop it right now. Blaming yourself for this is going to get you and your DD nowhere. If she does have autism then she WAS born with it. It is common to have regressions. It is nothing you did. You sound like an amazing parent.

We are here to hold your hand, day and night, no matter how long it takes, but no blaming, ok? It is not allowed.

Other points: the husband thing is very common sad.
There is a course called 'More than words' by a company called Hanen. It's often run as a course by LEA and while it's unlikely you'd get a place on the course without a diagnosis, you can buy the book (unfortunately it's quite dear but you might get a used copy on Amazon). It is really good for the things you're doing instinctively anyway - rewarding attention by tickling, blowing bubbles, etc. I really recommend you get it.

The one piece of advice I wish I'd had pre-diagnosis is that it does no child any harm to assume they have autism and to start in straight away with techniques and strategies to help them. Lots of info on here, and the national autistic society website too.

((hugs))

EllenJaneisstillnotmyname Thu 10-Jan-13 23:08:38

http://www.winslowresources.com/more-than-words.html

The above website is a good source for More than Words. Nothing else to add, really, you've had great advice. I'm in awe of your perception, I was in denial about my DS for ages, yet in retrospect things weren't right from about 12 months old.

EllenJaneisstillnotmyname Thu 10-Jan-13 23:09:02
Paribus Thu 10-Jan-13 23:45:59

OP, your DD does not necessarily have autism. The signs you are describing may or may not be indicative of ASD (have you checked her hearing by the way)? Having said that, it won't do your DD any harm if while waiting for dx you will start implementing some techniques used for early intervention- lots of floor time, attempts to interact, look up ABA and associated techiques, some sensory integration. IMHO, lots can be done even in such young age, so don't concentrate on dx, concentrate on how to help her.

Ah it's very normal to be the only one with concerns. Or to be treated as if you are the devil for even suggesting something might be wrong. I used to have to hide my books on autism (very early internet days so there wasn't a lot online).

You have my sympathy, but it does work out in the end. Some people never quite get to grips with it but they do usually learn to keep quiet.

I DO think 8 months is a little too young to be certain though tbh. I was watching ds3 like a hawk (ds1 is severely autistic) and just couldn't tell at 8 months. He had some worrying red flags. By 15 months it was clear to me that there were issues. We got in contact with Sunderland and had his urine tested. His test results were screamingly high for casein. I did not want to put him on soya, but switched him to goats milk (nanny) instead or if I could find it guernsey cow milk (different protein than friesian), and well, within a week the lights had gone on and there was a huge change in him. He's 8 now, on a completely normal diet, bonkers but totally NT, no concerns about him at all.

I know some people get lemon sucky about diets etc but I mention it in case it's something you want to pursue as you wean. We went that route because ds1 had responded well to diet when younger, and his regression was associated with dietary changes (he's 14 now and on a completely normal diet, after a few years on gluten free) and the tests indicated it was a potential problem for ds3.

Eliza22 Fri 11-Jan-13 09:15:09

Willwebeok.... Firstly, it may not be that your little one has autism but I will add my own experience, which is very reminiscent of how things are for you.

My son is now 12. He was diagnosed with autism aged 4. He is high functioning (not genius) but good vocabulary/conversational skills, attends mainstream high school with autism support attachment unit. He's loving, funny and still maintains his autism alongside all of that. He also has a diagnosis of OCD which can be a co-morbid of autism.

As a baby, and I mean 3 months + I KNEW he was different. He screamed. A lot. I was back and forth to my GP and HV who were kind but checked him over and diagnosed colic/tiredness/anxious "first time mum". Months went by. We couldn't initiate any baby stimulation/play/songs/cuddles/jiggling up and down without massive screaming fits. Nappy changing was a nightmare. At aged 12 months he would spend hours flicking wheels of cars, gave little eye contact and was an unhappy baby. I was exhausted and terrified that my baby didn't like me. I said the word "autism" to friends, family and GP/HV but was told, as you are, "all babies are different/he's beautiful/he's smiling now!" Yes, there were odd moments of eye contact and smiles but even so, SOMETHING WASN'T RIGHT!

By 18 months he was lining things up. Give him some little toy cars and he'd line them up in size/colour rather than "brummm" and play with them. If I tried to "join in" or disturb him he'd go bonkers! GP said "he's got the 'terrible two's early!!" By age 2/3 he was in his own little world. Speech was limited. Baby groups were a massive wake up call as far as I was concerned..... He hated them... he couldn't cope with all the singing/noise/nursery rhymes/"clap hands" and play. HE WANTED TO BE ALONE.

One day, when our HV had been on Mat Leave and not replaced, a lady called on me. She was checking the caseload of the absent HV and how was I/baby? The day she came I was at the end of my rope. Ds was having a total meltdown and this woman, medically untrained but a mum of 4 said "this is not good is it?" She set the ball rolling. We saw a Paediatrician (ds was nearly 3). He was assessed and after a lot of monitoring and follow up, he was diagnosed with autism. My husband, like yours, had said all along "there's nothing wrong with him, it's YOU". I was so relieved to hear the Paediatric consultant say "I'm so sorry to tell you that your son has autism". I could have kissed her. I was at the appointment on my own as DH refused to go.

I do hope that all goes well for you but, my advice would be that your little one is very young and it's probably too soon to tell. Continue to see your GP and HV and express your fears. Keep a diary of things that occur that are a concern to you. But...... dd is your child and mums usually know when things are not right, in my opinion.

Eliza22 Fri 11-Jan-13 09:22:32

Oh, and ds, now 12 as I say is typical of his age. He spends ages faffing with his hair; tells me repeatedly I am an embarrassment to him and importantly, explains patiently to me that "I'm just not a group/club kind of boy" when I try (I STILL try) to engage him in some group social activity because its "good for" him!

He is very immature. Has difficulty being with others, making or maintaining friendships and is a massive "home body" but, he's quirky and funny and a fantastic boy!

WilsonFrickett Fri 11-Jan-13 09:27:29

Just re-read your OP again and I think you should get her hearing tested as a first step.

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!

Inaflap Sun 13-Jan-13 22:26:10

Try cranial osteopathy. It seems like woo but it works and might just help.

I quite understand what you are going through. Been there and got that tee shirt.

My DS is the nicest person you could ever hope to meet. He is articulate, funny and does empathy. Crap at eye contact with strangers though!

Keep interracting just make it all bigger. It may be her eye sight is developing as well and behavioural optometry when she is older can really help.

Take care of yourself. Its a long, rocky path but there are some fab people along the way.

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