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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

Message withdrawn at poster's request.

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.

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