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Does it ever get better?

NAS96741

Hi all,

My partner and I have a beautiful 3 year old girl who was diagnosed with ASD back when she was 2. I had known something was up since she was about 6 months, she wasn't hitting social milestones and something just felt off. Straight from the start it was hell, she was diagnosed with a milk intolerance at 5 weeks so for 5 weeks it was constant screaming, upset tummies and vomiting. Once she was put on lactose free milk, things seemed to improve but she would still cry from 6pm onwards till she went to sleep which would be anywhere from 9pm to 12am. Since the diagnosis, things have been significantly harder, not just with my little girl, but with the whole system.

She also has Global Development Delay and it was stated she was functioning as a 12 month old at 41 months. So she doesn't talk, just lots of noises, babbling etc. She also doesn't really understand a lot, If I asked her to get something, it would fall on deaf ears. If I point at something to show her, it would be like I wasn't even there or that she has no idea what I'm doing. I hope you get the gist of it.

It's just so hard, we cant go out. My little girl is a flight risk, she just runs away. You put reins on her, she'll pull in the direction she wants to go and if she doesn't get her own way, she'll scream and throw an almighty tantrum. On the rare occasions we've gone out for dinner, she wont sit still. She'll just want to run around the restaurant so myself or her dad will have to walk around after her whilst the other eats then we swap. I just feel like we cant do anything as a normal functioning family, it's always so complicated. We cant spend the entire time running after little one but that's what we always end up doing. If we try and keep her still and distract, it'll either work for a little while of she'll scream and throw a tantrum. We have to be on high alert at all times as she is always doing something she shouldn't be (trying to get inside the rabbit cage/climbing the sofa to get to the bookshelves) and when we stop her or tell her no, she gets angry and goes off on one. Thing is, this sort of stuff is happening a lot of the time. Sometimes she'll sit nicely and play on her tablet or with her toys. We try and talk to her but she doesn't understand what we're saying. If we just say no, she gets angry which doesn't help the situation.

Recently I feel like things have got so much worse. She loves to throw anything and everything, if you try and stop her, she gets angry. She's also really attached to me also so I have no space or time to myself. If I leave the room I have to wait for her to follow. When it's bath time, I have to be the one to take her up. If dad comes near her sometimes, she screams and cries because she things he's going to take her away from me. Just recently we've been having sleeping troubles too. She thrashes around all night hitting the sides of her crib most of the time waking her up. If dad goes in to her, she cries so he brings her into our room where sometimes she'll settle down next to me. Sometimes, she'll want to get up and pull my hand to take her down stairs.

For example, last night she stirred at 3am, I was just about to sleep so went in to check on her. She woke slightly and grabbed my hand to hold whilst she slept so I had to sit next to her till I was able to get away at 4am. She then cried out at about 6am which woke me so I went in to check on her and she got up so I took her back to our room. she sat up and pulled at my hand to take her downstairs and cried/made a moaning noise till I did. If dad takes her, she goes into an almighty meltdown so it has to be me. This kind of pattern has been going on for a couple of weeks now and we're so tired.

We're also going away on Monday and we've both admitted we're dreading it. We struggle with our homelife as it is, it's going to be so much harder in a cramped caravan. I hate the fact we feel this way about something we should be looking forward to. I just feel confined to my house, I cant take her out on my own as I cant cope when things go bad and cant chase after her so we always go together.

It's Saturday as I'm writing this and I haven't packed or been able to sort anything out for myself the holiday. I just don't have the time, if I leave the room and my little one comes with me to my bedroom, she'll then try to drag me downstairs after a short while so I can never get anything done. Luckily my other half has done her stuff and most of his. He tries to help as much as he can but she just screams and thrashes at him. I cant bear it so just don't go anywhere even though he insists. He would pack for me but I'm very particular know what I'm looking for.

As for the system, we had a lady that we met with online and in person twice a month to check off milestones for a few months which has now stopped and we had 3 speech therapy sessions which have also ended, we were given 5 sheets of paper with instructions to continue with and if no improvement in 12 weeks then we can call back for 3 more sessions. We've had no help on how to cope as parents, no information on Autism and how to support our child. I feel like we we're handed a diagnosis as the assessment then thrown out into the void to get on with it. We didn't even know we we're attending an Autism assessment, the letter we received was labelled for behaviour and speech, they told us it was an assessment when we arrived for the appointment.

I was hesitant about posting this as I don't want it to seem like I'm complaining about my daughter, I'm really not. I love her more than anything in the world and will do whatever I can for her, but myself and my other half are finding parenting so difficult, especially as she is our first. I don't really know what I'm hoping to et out of this, I guess to know if things will ever improve? 

Sorry this is so long but I have no idea what else to do. I don't know what I'm doing half the time and I feel like I'm letting my little girl down massively.

  • Hi, I just wanted to let you know how much your post has resonated with my experiences as a mother to an autistic daughter. You are not alone. 

    My daughter is now 9, but her early years were very similar to the experiences you describe. She had GORD and breast refusal, screamed, bucked, writhed and threw herself around with such force from the earliest age - it was terrifying. We had put it down to the pain she was in, but even after this side of things were managed, she continued to struggle. She was diagnosed with ASC just before she turned 4, we had considered this but also thought her ACEs could have caused her delays in reaching developmental milestones. 

    Regarding socialisation, again your experiences ring so true - I would just say try to keep in touch with people who will understand and support you, if possible. It can be incredibly lonely and isolating, feeling trapped in your own home - have you got people that could come to you? So at least you feel you have company, a shared window into what you’re going through? I have never been good at reaching out and asking for help: I struggle with maintaining social relationships and find it best impossible to establish friendships without someone reaching out to me first - my early years with my daughter were a stretch of loneliness and despair due to this. Please reach out (posting on here is a good start - this is the first time I’m doing it too!).

    Does it get better? All autistic people are unique individuals, so I cannot speak for your daughter and how she’ll develop as she ages. Do things change though? Yes. My daughter’s attachment issues she had as an infant are lessened - I think nursery placements have already been mentioned, explore them if you’ve not done so already, it could benefit the three of you greatly. You need space and time away from each other to help you cope. Your daughter will find ways of communicating which will help you understand her needs - start establishing signs or images to help give her-non verbal ways of showing her desires. This could help lessen her frustrations and outbursts (apologies if these are things you’re already doing!).

    I find parenting my 9 year old very difficult still - I clicked on your post as I was looking for advice too, and wanted to read anything which may have already been discussed which might help me as well. However, when I look at how far my H has come, there is light. Of course, there is shade as well, whole dark patches where it’s cold and shadowed and hard to reach, but also swathes of golden sun - things change and it can be easier. New challenges arise, but it can be easier. You will all grow together as a family, and it can be easier.

    Remember you don’t have to go through this alone. 

  • I thought of something else - does she go to nursery? If not, have a think about sending her to a nursery a few hours a week - speak to staff at local ones to see what support would be available for her. She will have to start school within the next 2 years, so you need to start getting her used to being cared for by other people, not just you. It will also give you a break.

  • Yeh the system sucks. It leaves you with a diagnosis and tells you just get on with it. They do the same to all of us who have autism or have someone who is diagnosed with it. Sadly you need to figure out for yourself what will work for your daughter. Parents get blamed a lot for their children having autism sadly. Many professionals even to this day still see the parents as somehow to fault for it. There is no easy answers. Nobody knows what causes autism I am afraid. Even anti vaxxers don’t really know either. Andrew Wakefield thinks autism is caused by vaccines but he doesn’t know the mechanism behind it he makes guesses at it but doesn’t really know. It is truly an under studied area. It seems that your daughter is probably in distress to me. Because of her autism symptoms maybe. Maybe seeking a doctor who can prescribe some medicine for the aggression might help. I have tried medication and it sure helps me. Is it a miracle god send? Well no but yeh depends how you look at it I mean it certainly helps.

  • I'm sure it will get better. Many toddlers who are not autistic have tantrums and parental attachment issues, and difficulty getting to sleep alone.

    Here is a link to some info that might help:

    https://www.nhs.uk/conditions/autism/autism-and-everyday-life/help-with-behaviour/

    I wish you well.

  • No advice sorry, but you sound like a good parent who cares about their daughter. It's ok to feel like you are struggling.