Published on 12, July, 2020
My name is Susie, my 8yr old daughter has autism and was diagnosed 2 years ago, she has 2 older brothers neither of which are on the spectrum.
I've been through it all with the heartbreak of diagnosis to eventually accepting the fact that my daughter is different, and loving her all the more for those differences. It's a hard road at times but I would not change her for the world.
My daughter is in a mainstream primary school but spends half her day in the learning centre (special needs school) where she needs one to one supervision all day. She has speech but it is limited and there's a lot of repeating whats been asked but not knowing how to answer, routines are extremely important as I'm sure every parent on here will be familiar with. She gets very anxious and upset and self harm at times (thankfully not as much as she used too). I'm looking forward to hearing other peoples experiences and joining in discussions, and also be interesting to hear from people with daughters on the spectrum or they themselves are on the spectrum.
Hi amy
thank your or the information about apps, my daughter has 1 called grid player for the iPad which is similar to the ones you might have described symbols and pictures, she uses it sometimes when she is having difficulty tryint to explain herself.
i would love my daughter to be able to read and write the way you do someday, but for now I'm happy she is progressing in small ways.
my daughter has an about me book in school but it is mainly pictures with a words but it helps her and also anyone looking after her to understand more about her.
thankyou Amy
Hi Susie
People say that a lot-that I am good at communication by typing. Maybe I do not always realize it but I suppose I am quite lucky that I am good at this. I like being online best because I can use websites the same as anyoene else can. (exept from possibly sometimes needing to use a overlay if it has strange colours)
It sounds like your dauter will catch up and probably end up like I am now with reading. I was slow at reading in primary school, always towards the back of where I should be, it just took me longer to read all the books. Sounds really obvious why now. But somewhere in school I caught up to nearer to where you should be at the age. I struggle more with understanding what I read though-I still do read things slowly-and more than once to help me understand them. Reading fiction is where I find it hardest, if they have complicated story lines or it is hard to follow it. But then I am much more instereested in a book with facts anyway so not reading stories does not really bother me.
That keeps happening a bit to me at college, when lessons get changed I end up going to the LSC (learning skills center-basically its support for people with extra needs). It is just the time of year, Neurotipicals want to celebrate and change things and us with ASD hate everything about it so it is never easy. I have never really found what to do to help with this. Because you never know about the suprise fun lessons becaue they are supposed to be a suprise. I then end up shutdown in the lesson doing nothing and being ignored. At school I used to take a nice fact book and torch so if they were waching a film I could read-but they do not do that in college so I do not know what to do now.
Apps are different if you have a apple product or a product that usees Android, mine is android so I only know for that. their is loads of them out there for apple though if you have that instead. Oh, and I have not paid for any of these, some of them may have extra bits you can buy but I can not remember exactly. Some of the better one I have and still use are:-ACC Talking Tabs (it has pictures that you touch and it says what they are, nicely aranged so it is easy to find them, I think their is a version to pay for but I just use the free one)-Jab talk (basically you have to make all the symbols and sound yourelf and arange it how you want, bit of a pain to do but means you get it exactly how you want) -Alexicom (this one deffinatly is only a demo version for you to buy the full app. Similar to some of the others really just I like the range of things on it even if some is missing)-ACC speech (this has a lot of words on, it might be too complex for your daughter being younger than me but I would recomend it for when she is a bit older) -Alternative communication type & speak (has some common sentaces written, but other than that you type whatever you want and it speaks it-really easy to use if she is able to type/spell-sometimes I end up spelling things wrong and it does not make sence and I have to show it to the person instead)-'type to speak' and 'speak now' are the same just they do not have common sentances there.
I have tried and still got all these ones. I think the ones I use most are Alternative communication type & speak and ACC speech but they all get used at different times. If you can't find any of them ask me and I will try and describe them a bit more.
I really agree that their is not enough people at schools and colleges that understand ASD. And in lots of other places too. I wrote a 'about me' information sheet which really helps. I just wrote a paragraph about what ASD is generally, then how it affects me and what theings they can do to help. It is 1 side of A4 so not too big and it really helps (if people bother to read it), because just saying I have ASD is not enough when people do not know what it is. If you start ending up going new places or meeting new people a lot it is a really good idea. I mostly use it when I go on courses with cadets, and so I can just give it in with the other forms for personal details and parent permition and medication.
Amy
Hi my daughter was diagnosed at 6 she is now 8 , and up until she was 4and a half there was no symptoms of ASD at all she was for want of a better word a normal little girl non stop chatting , questions and full of fun , then 1day she completely shut down stopped talking altogether stopped eating and went into herself it was terrible we didn't know what was wrong! Anyway she had a stay in hosp and they said had she been investigated for having ASD which she does , the whole thing was horrendous and in someways felt like a bereavement as she was not the same girl.
I know exactly how you feel it's such a hard time, I am blessed to have 2 children that are not on the spectrum but then I very blessed to have my daughter as well I love her to bits and now I've come to accept it things are a lot easier. She is the way she and I think once you learn to deal with things and get the proper help in nursery (if she's in nursery) things might get easier.
Once you get a diagnosis you can start reading up on things and also thing can be put on place in schools and nursery for your daughter , my daughter has a SEN in her school with her all day and its a great help and also necessity as she needs supervision constantly, the diagnosis helps greatly in getting extra help for your child.
the worst part by far is waiting on the diagnosis and once you have it you will feel relief bu also a lot of other feelings, I would say take your time do things at your own pace, when my daughter was diagnosed I was given numbers of local autism society's to talk to but I wasnt ready and waited a good few months before doing so.
Are you waiting for process to start or are you going through it now?
hope this hes in some way.
susie
Hi Amy thankyou for your comment, it's very interesting to hear from you and although you say you struggle face to face with people ,you are certainly very articulate from what you just said , I would love my daughter to be able to communicate as well as you do through writing when she is your age.
At the moment she is reading age 5 standard and sometimes struggles to remember certain word so books have to be re read at school, she is doing a lot better than a few years ago when she couldn't read at all and I honestly can't see her ever being able to. She was very stressed at school and lots of meltdowns and self harm, although that has lessened but recently in the run up to christmas she had scratched herself a lot at school, just to noisy not the usual routine in her class, although she went back to the learning centre(special needs) and had a bit of relaxing time it's not easy as you know.
She does use picture exchange comunication and it certainly does help, but it can't say everything for her, she has a home -school diary So I Can read everyday what she's been doing and how she's been, because a lot of the timeshe can't tell me herself. It is so frustrating for her.
That would be great if you could tell me some apps you use for communication, I want to encourage her to talk but anything that would help with communication would be great.
i am glad u are at a college that you feel is helping, I don't think there is enough understanding of ASD by schools and colleges.
Susie, how are you? So, your daughter was diagnosed with ASD at the age of 8 year old. My daughter is two years old right now. In her initial appointment, the child development doctor pretty much told me that she is having some ASD symptoms. I haven't got her diagnosis yet. But, I'm having a hard time accepting it. Is there any tips you can give me? She's my first child. You are very blessed that you have other kids that are not in the spectrum. I'm so terrified to have anymore children because of this incident.
I am Amy and I have ASD.
I was diagnosed about 2 years ago, and have probably had the same thing of always knwoing I am different but now knowing it has a name was strange at the start. I think I have accepted it by now.
I think I sound quite a lot like your dauter. I can speak but not all the time, as no-one understands! I get frustrated really quickly and then that is when I can't speak and then can not tell people what is wrong. It is really hard. Have you tried other communication, for when she is struggling? Obviously encourage her to speak but I find other things help to, or, I am getting there slowly. I use a mixture of signing while speaking (even if the people I am speaking to do not know sign language, it helps me to speak - never worked out how!), picture cards, and I have an app on my tablet that can speak for me if I nee it. Their is quite a few of these, let me know if you would like to know more about any of it. I prefer to be online bcause then people do not know how much I struggle everywhere else unless I tell them so I can join in like anyone else.
It is good that she was diagnosed then, I was diagnosed at 15, so could not get any support at school, I get a bit more support at college now but I missed out and struggled a lot at school. Also she sounds lucky that the school is giving her that support-I hope it is helping. The mixture of places sounds really good too-I wish I had that, or that I could have it now. I did find a possible option for it but the special college said I am 'not dissabled enough' and got rid of me. Anyway, the place I ended up at is better than the first college I was at, and they are still keen to keep finding things to help wich is good progres.
I also self harm, so I can help with that too if you have any questions. I get upset and axious quite a lot too. I keep finding on here that parents like to hear it from people with ASD to help understand their children. If you have any questions then you can ask.
Like I said I think i am quite similar to your dauter, and I can try help if you want me to. Amy