Autism

Parentberries
1

Does anyone have a child with autism? [name_f]Apple[/name_f] is 5 and being assessed next month. It is suspected she has high functioning autism.

I had always suspected something, but everyone always told me she was fine, even her doctors. But she’s had a tough time at school and they helped us a lot, and now she’s finally being assessed.

She’s always had what I now recognise to be symptoms (really the list is too long for me to type), but the past year since her little sister was born (who is now 13 months), she’s been harder. She doesn’t play well with her siblings and has recently turned into a hitter. It’s frustrating. She’s so loving and sweet most of the time, but when she isn’t loving and sweet, she REALLY isn’t. So much that her siblings don’t want to play with her sometimes. But she doesn’t seem to understand that what she does has consequences.

She gets so frustrated and angry SO easily and she usually doesn’t seem to know how to deal with that so takes it out on me, my husband or her siblings. Or just has a meltdown, no matter where we are. I had to carry her out of the supermarket last week and I just broke down in the car because I know it’s not her fault. And I don’t know how to help her.

The other symptoms are not so bad, but her behaviour at the moment is getting worse and worse and it’s incredibly overwhelming and stressful and it’s almost like I can feel my sweet girl slipping away and I feel like I’ve failed as a parent.

Part of me hopes she gets diagnosed so that we can get the appropriate help and support and have answers that will explain a lot of her personality and behaviour. Does anyone have any experience with autism? I know I’m not alone and loads of parents are going through similar, but having someone to talk to might help?

2

My daughter was recently diagnosed with having autism. She just turned 3, and I’ve known for a while that she was behind in terms of speech and development.

Definitely get your child an IEP (or equivalent) and take advantage of any resources you can. And definitely see if they offer respite care in your area. It’s going to help give you a break

3

[name_m]Hi[/name_m] ,

Not a parent but I’m on spectrum myself so I might be of use to you. Firstly don’t panic - you’re working on it a lot earlier then most. I was 3 but most (especially girls) aren’t diagnosed till well into their teens or even adulthood - (for example my dad was 32 when he was diagnosed). Also this is going to sound horrible but it’s actually good that she’s lashing out - it means she is trying to interact but is just lost on how.

When it comes to where she has meltdowns - is it typically in places with fluorescent lighting? Because as a kid places with fluorescent lighting such as the supermarket would really stress me out. Also crowded areas with lots of noise (especially if they’re big areas) can be a struggle even now at 18.

It’s going to be a learning curve but you guys seem determined and so does your little girl. Also don’t feel like you’ve failed - many people like [name_m]Bill[/name_m] Gates , [name_m]Dan[/name_m] Akyrod and [name_u]Darryl[/name_u] [name_f]Hannah[/name_f] have gone on to have really successful and happy lives. I’m sure she will too.

4

Thank you both so much.

I don’t so much feel I have failed because she may have autism. She’ll still be the same [name_f]Apple[/name_f] she was before, just with a diagnosis, which will help in the long run. I more feel I have failed because I didn’t push for an assessment earlier and listened to the doctors who brushed it off as normal toddler behaviour. I should’ve pushed for this to happen earlier so if she does have autism, she could have had help earlier.

I will definitely be utilising every resource that we can. I’m still not sure what they will be, but I’m not saying no to trying anything that could help her.

I haven’t noticed any pattern with her meltdowns, she has them both in public and at home but they are usually worse in public, I think maybe she gets overwhelmed. It’s entirely possible that flourescent lighting could be a factor and I definitely think crowds and noise are too.

Thank you both so much again.

5

My adopted sister has a son with autism and she told me they just started testing kids younger than 4 or 5, so don’t feel too bad about it. my sister knew there was something “wrong” since he was a toddler, but they wouldn’t test him.

6

Thank you so much.
That’s exactly what people are telling me, but I still feel bad. It was her school who helped us push it further and I was relieved that they thought something was up too, finally I had someone else to help me advocate for her, and they were fantastic at helping us get her referred. Her teacher is AMAZING. I’m so thankful she has a teacher so understanding and supportive. I almost want her to adopt me. :smiley:

7

Another personal anecdote here, if you don’t mind. :slight_smile:

I’m not a mother, but I am on the spectrum. I was diagnosed rather late, at seventeen. While it was hard on me to have spent seventeen years without the support I could have had, my mother told me that she didn’t regret any of her decisions. [name_m]Even[/name_m] without a diagnosis, she still made sure I had all the help I needed in school, and my twin sister was always a sounding board for my social confusion. ([name_m]Even[/name_m] as adults, I still look to her for guidance. I just asked her this morning how to approach my boss about a scheduling conflict.)

Anyways, my point is: Although this is easier said than done, please try not to blame yourself. You are the best mother for your child, and your daughter will always have bad days. There will always be times when she is struggling, and there isn’t anything you can do but love her. That’s okay.

I cried whenever I was held close. I never made eye contact with anyone outside of my family. It was a running joke in my house that I was the most literal person on the planet (to which, I would of course reply that there was no way we could know that for sure!).

There were so many times that I could have gotten the help that you are getting for your daughter. It doesn’t matter how the help comes, as long as it does.

This was most likely a rambling mess, for which I apologize. But what I’m trying to say is that Autism is hard. It’s awesome. It’s the reason that I am who I am, and the reason that your child is who she is. But sometimes, it’s just really, really difficult.

There was a time, shortly after I was diagnosed, that I cried in the car with my mother. I asked her why things had to be so hard for me. Why communication was so confusing, why I had to deal with sensory issues, why I couldn’t have had an IEP growing up . . . It felt overwhelming and I felt cheated of ease I was seeing in everyone else around me. My mother cried, too. She cried for all the symptoms of mine that had turned into funny quirks, rather than pieces of a larger puzzle to be solved.

But here’s the thing: It’s okay to cry. To be frustrated, to feel cheated, and to wish that things could have happened differently. [name_m]Just[/name_m] keep giving yourself as much grace as you give that little girl. You both deserve it. As long as you continue to do that, the “what-ifs” will start to feel much less important than they do now.

8

I don’t have a child but I myself have high functioning Autism. To be precise Asperger Syndrome. I also have lot of other disabilities such as OCD (Obsessive Compulsive Disorder), ADHD (Attention Deficit Hyperactive Disorder), speech and language disorder, anxiety and other disabilities.

I myself wasn’t diagnosed until the age of eleven after years of fighting the system. I live in the UK. In the end my parents paid privately to get me diagnosed. My parents were told there was nothing wrong with me but instead they were bad parents and must be doing things wrong.

As I don’t know much on how my behaviour affected my parents and brother during my childhood I will ask them for you. I sort of blocked out my childhood years as the years weren’t great for me for the most part.

I hope you get help soon for your little girl. If you would like to talk to someone about it feel free to PM me on here.

9

I have several friends who have kids on the spectrum. My daughter doesn’t - but does have ADHD and has had some similar struggles.

The key with a school-aged child is to really look for/request every intervention or helpful resource available through your child’s pediatrician, school, etc.

10

[name_m]Hi[/name_m]! I’m not a parent (yet, stubborn thing’s a week overdue!), but I’m a teacher and have worked with kids with autism, plus my brother has high-functioning asd (formerly called aspergers), and I’m 99.9% sure my Dad did too.

Firstly, like others have said, 5 is young! Esp. for a girl. You might have known something was up earlier, but may still have gotten nowhere with the professionals even if you pushed hard. You’re working closely with the school and school sounds supportive, that’s awesome.

Behaviours are HARD. I’m not sure what’s available in your area, but like you’ve said you’ll do, seek out any support systems and courses that you can.

Some suggestions that may or may not help, presuming she is on the spectrum:

  1. Things like crowds, sensory sensitivities to lighting, smells, etc can definitely be more difficult for kids with autism and might cause some if the behaviours or meltdowns. You might be able to avoid the supermarket at the busiest times etc? [name_m]Just[/name_m] look for patterns of what you notice with [name_f]Apple[/name_f], every child is different. There may also be particular sensory things she finds soothing - eg firm hugs, rice trays.

  2. structure and routine are your friends! They’ll help her to cope in an otherwise often confusing or overwhelming world. Try if possible to keep morming and evening routines pretty stable, and even things like supermarket trips if you can. Giving “take up time” for her to follow instructions can help too, e.g. “we need to stop playing and start tidying up when the long hand on the clock gets to the 9”

  3. visuals are also your friend. Lots of verbal instructions can be hard to understand at times. So charts with pictures that show routines or give warning about what’s going to be happening next might be helpful.

  4. using her words, and what words to use, might need to be explicitly taught and modelled. Eg one of my 5 yr old students used to get frustrated about not being able to open his yoghurt by himself and would scream and throw it across the room. It took lots of pre-empting, explaining every time he sat down for morning tea “remember that you can ask a friend or teacher for help”, but now he stays calm and asks for help.

  5. Understanding ‘theory of mind’ can take a bit longer for kids with autism. They might find it hard to accept or understand other’s having different perspectives and needs from their own for a while. This can make things like ‘wait time’ quite tricky: when one of my little boys with asd wants something, esp. a song he finds soothing, he wants it NOW, and doesn’t understand that others might be busy or want something different, he thinks they’re just not understanding him. Teaching independence, or being able to wait longer periods of time, or understanding “first… then…” can take some time, but are possible! [name_m]Just[/name_m] go gradually, use what you learn from asd courses etc, and judge how much to push. [name_m]Even[/name_m] my student who’s barely verbal and very flappy got the message that if he was going to throw sand all over the floor then he needed to help sweep up some of it before getting the toy he wanted (but it was more of a token 3 sweeps than a full clean)!

  6. motor skill difficulties are common from what I understand. There are lots of fun activities that can help develop motor skills if these are an issue for [name_f]Apple[/name_f] too. But also, don’t put up with crap teachers like my brother’s science teacher at high school who insisted he copy out each experiment before being allowed to take part - so due to his slow, child-like handwriting he always missed out. Good teachers know what to push and when to adapt. If having a writer to help out in exams is something she needs down the track, she should get it!

  7. autism is awesome. Hard to parent, and I imagine hard to live with, but also awesome. [name_f]Every[/name_f] person with autism is different - but they often have some really cool ways of looking at the world.

11

[name_m]Don[/name_m]'t be panic just realx it is the time that you have to become a strong piller for your daughter she needs your support now. If you fall down then how will you handle the situations? And you’re not failed, you recognize it on this early stage and now your are recovering it so relax. [name_f]Every[/name_f] problem has solution and this one has too. All you need to do is to spend as much as time with your daughter and always talk with her. Try to know what is she thinking and what she likes to do and if she dislikes something then find out the reason and try to tell her with love that what is the problem. You already started the treatment but the actual treatment for a kid is love of their parents and that is the real healing power. You don’t worry she’ll be fine and lived a very happy life. Be strong and be happy with your kids.