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Girls On The Spectrum

I am hoping some parents or grandparents out there can help me with my daughter. She is four years old, but acts and speaks more like a two year old. She has always been behind, but I always thought she would just catch up eventually. Basically, I have been in denial. I think what threw me off was all the research about children with autism were more about boys than girls. It wasn't until I read an article about girls being under diagnosed, did it finally click that she may have a form of autism. Many people tried telling me, but I kept denying it. She is very snuggly and makes eye contact. I have never noticed any stimming (arms flapping, lining objects up, etc.). She has been to a neurologist, but needs to see a couple more doctors. I guess I am just looking for hope. I am still holding on to the hope that she will be fine when she grows up, even if she does have some challenges. I worry about her having friends, because kids are already mean to her. She just doesn't understand how to play with kids properly. She knocks down towers other kids build and messes up their puzzles they put together. It's like she doesn't quite understand cause and effect no matter how many times she does these things. She also has terrible meltdowns if I am not careful. I find myself not disciplining her in public, just to prevent a scene. She had a meltdown today, at the store, because I wouldn't hold her. She also doesn't like to be separated from her brother. I have been trying very hard to make her more independent by not holding her so much and she has gotten a lot better. I'm sure a lot of you would understand that she has her good weeks and bad weeks. She is in Special Ed preschool, with speech and occupational therapy and social work. I tried putting her in swimming, but the gym told me she should be in private lessons because of her delay. Private is too expensive.
Anyway, any help would be appreciated. I am mainly looking for comments from parents of girls with autism. Thanks! C
ss378008 ss378008 31-35, F 3 Responses Jun 3, 2012

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I am a girl with Autism
Naomi

I have a little girl on the spectrum - she's 4.5 and she's the coolest little girl i've ever known :) It is a shock when you first find out or even start to suspect. I knew early on, she started regressing at around 16 months...pure terror, no other words. I would sob for ages in the shower every day. But once you get the diagnosis, once you know where you stand, you just need to be organised and focused and above all have faith and hope.<br />
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The provision where we live for early intervention was almost non-existent so we went down the private route - we tried heaps of stuff, some worked, some didn't. Each child is different and its harder when its a little girl because they don't usually conform to the 'stereotypes' of a child with autism. Our DD does not stim, she 's not really got any obsessions other than wanting to have every aspect of her life recorded on my iphone lol! she doesn't line things up, she's very affectionate with us and others (this wasn't always the case though, we couldn't hold/hug her between around 18 months and 2.5 yrs - heartbreaking). She has great eye contact and her interaction with people is quite natural looking. And thankfully she sleeps like an angel, always has. <br />
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I can tell you what interventions worked the best for us - especially in the last year or so. Psychotherapy has been a God-send. We were lucky to find an autism therapist who usually ran ABA programmes who was studying to be a psychotherapist. We hired her to come into our daughter's nursery (she is in a mainstream school setting) once a week and have a therapy session with her, also train our daughter's 1:1 support worker at nursery and we meet her every fortnight to go over how DD's doing and coping. She will now play with other children (although she struggles with following their agenda...they love her so generally just do what she says as she's a bossy boots...I suspect this will change fairly sharpish as she starts full time education in September). It may sound strange to recommend psychotherapy for such a young child but it has seriously improved our daughter's language, calmed her down very much and also helped with her emotional development. <br />
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Speech Therapy: I wasn't really that impressed with the quality of the speech therapy DD was getting so I studied and read up on how to do intensive interaction (this was for when she wasn't talking), floortime, play ba<x>sed therapies. I also rang 2 universities and asked them to speak to their speech and language therapy students to see if any were interested in doing some volunteer work with a little girl with autism - had heaps of responses and we had some great people come work with DD. <br />
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Occupational Therapy - more specifically sensory integration therapy - is HUGE...DD had so many sensory issues and now has none. It made a huge difference. There is a book called The Out-of-Sync Child: Recognizing and Coping with Sensory Processing Disorder, Revised Edition by Carol Kranowitz - really clued me in to a lot of DD's stranger behaviours like constant rubbing and biting of her lips and always wanting to be upside down. <br />
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Books: These books have been really helpful to me in sorting out stuff I do with DD at home:<br />
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- Overcoming Autism by Lynn Koegel (best book I ever read)<br />
- Parenting Girls on the Autism Spectrum: Overcoming the Challenges and Celebrating the Gifts by Eileen Riley-Hall<br />
- The New Social Story Book, Revised and Expanded 10th Anniversary Edition: Over 150 Social Stories that Teach Everyday Social Skills to Children with Autism or Asperger's Syndrome, and their Peers by Carol Gray and Tony Attwood <br />
- Any books by Temple Grandin (who is herself autistic)<br />
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I'm crazy with the social stories - anything I want to teach my daughter I put into a story, I copy one from the book above, I make one up - it really does work with her. Her sharing has improved so much at nursery and i'm sure its because of the social stories. DH and I had some crazy stories going during potty training (which btw was the worse 6 months of my life...hope yours was easier!). <br />
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I wouldn't worry too much about her being behind. I know its hard not to compare, especially since there is so much pressure between parents (the school mum brigade is soooooooo annoying) trying to 'outshine' each other through their kids. With aspergers you are going to get a very spiky profile for the child. Our daughter is probably at the emotional level of a 2 year old (hence the occasional meltdown - and like you I am apt to give in for the sake of peace when out and about...don't beat yourself over it, you have to pick your battles!), her speech is coming up to that of a 3 year old...academically she is at the level of a 6 year old, so no real consistency, lots of ups and downs. But she'll get there and so will your little girl. <br />
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Our paediatrician told us that once our DD is old enough to go to university and go do the things she loves to do and be with like minded people she will be happy and have a good life. The hard part is leading them through childhood which is hard for any kid but so much more for our kids. And its heartbreaking to know that it will be a struggle for them but how lucky are they to have us as parents?! You sound like you're a great mum, just never stop fighting and hoping for her. As Temple Grandin says, if it wasn't for autistic people society would still be sitting around in their caves socialising with each other :) Dream big!<br />
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Your daughter already has one huge blessing and advantage, having a brother. A sibling is the best possible therapy I think for our kids - I am sad that our DD doesn't have this but its kinda out of my hands. <br />
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Let me know if there are any specific things you'd like to know - am always glad to share what we've learned on this journey. Our little girls are so unique - DD is absolutely adored wherever she goes - she is so delightful (I know i'm biased but its true!) - her quirkiness is irresistible and I wouldn't change her for anything. I will always worry and hurt for the struggles she will face socially but at least we can prepare them as much as possible. And never lose hope - dream big for her! <br />
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Take care x

Thanks AnastasiaGrey! Nice name by the way ;) Thank you so much for taking the time to write a great reply. I kind of felt bad saying I wanted parents of girls with autism, but I feel that there may be a difference between boys and girls on the spectrum. A lot of what you described sounded like my daughter. I will definitely look into a psychotherapist. That is a great suggestion! I worry about the long term affects of her meltdowns. I can't imagine what those feel like to her. If it weren't for her meltdowns, I wouldn't be bothered by her at all. I too, love the quirks, though I'm not a fan of her new desire to lick things. It just started and I am hoping it goes away soon. She also likes to change her clothes a lot! It's cute, but she can't dress herself. So guess who has to do it every time? She has been going to a child psychologist as a step to getting a diagnosis. She is also getting a comparative genomic hybridization at a geneticist next month to rule out chromosome abnormalities. The psychologist seems to think she is on the spectrum even though she doesn't have a lot of the major characteristics of autistic children. He thinks that is what may be delaying her speech. Having her brother has helped a lot. He is just moving at just the right speed, so when he picks up something or learns to say something, she will pick up on it too. She really looks up to him, even though he is two years younger.
I just bought The Out-of-Sync Child last month. She has more of an under-responsive sensory issue. She basically walks around in a bubble. She doesn't seem to notice anything, visually and auditory, around her. I can't point to something across the street and say, "hey look at that squirrel!" She will completely ignore me. I had her hearing and vision tested and they came back fine.
Thank you for all of the other book selections! I can't wait to read them! The last couple of paragraphs you wrote made me tear up a little bit. Very inspirational! I also think my daughter is just the cutest thing that has walked the planet. She really is the vainest child I have ever met. She will stare at herself in admiration forever. It's hilarious.
I would love to hear more stories about your daughter. Thank you so much for replying. You have been incredibly helpful!
Lots of Luv! C

Hi there, I have a son who has autism. Sorry not a girl but I really dont think it matters. Every child is different, regardless, if they have autism or not. Right now you are doing everything you can. Early intervention is the key. Even though, you have been in denial, your child is in the proper programs that will help her. I know how tough it is especially at the stage you are at now. My son didn't start talking until he was five and sentences didn't come til around six. The best advice I can give you is to have patience. My son was a very loveable child and because of this, I thought "he can't have autism." My son doesn't play very well with others either. He likes to play with play doh. Many children do not understand him and at this point of time he is not bothered by this, however, I am. It upsets me that nobody ever ask him to stay all night. I have invited my neighbor's children to every one of his Bday parties. They come, but they have never invited him to theirs. Breakdowns are going to happen, and you as a parent should expect them. I dont think it gets any easier but you learn to cope with things. Becoming educational about autism will be very helpful. Remember, a child with autism will probably need to be told things over and over again. Not just once but every time. Give them time to respond. There brain does not work like others and they need extra time to understand what you are saying. Be specific when you speak because they will take you literal. Example: My son hurt my little girl and was smiling about it. My husband told him to wipe that smile off of his face. After he got time out, he came up to us and said, "Mom, Daddy told me to wipe my smile off my face, but If I do this then I wont be happy". When your child does start speaking, sometimes it may seem like they are being disrespectful or talking back. There has been many times when my son says "no". More like screams it! Remember unlike other children this is not disobedience at all. I feel like I have to always make things right and give him his way just so things can be kind of normal. Most children get over things quickly, but children with autism dont. When you punish your child keep it swift. If you punish for too long they wont even know why they are in trouble to begin with. Prompt them afterwards. Gosh I'm sounding like a therapist, sorry. If you have any direct questions just ask me! I could go on forever so I will stop here. Thanks for sharing.

Thank you for your reply. After I posted, I thought about the comment I made about getting replies by parents of girls with ASD. It really doesn't matter. I appreciate all comments. You have given me great advice. I'm glad to hear that your son is talking. I have worried my daughter will not pick upon speech so that gives me hope. I too pick my battles with my daughter. My mom is in town so she doesn't see her very often, so when I said I let her run around naked (with underwear), she gave me a look. Then this morning, when she had a melt down, because my mom wouldn't let her take her pj's off, she understood why I let her. She knows she can't do it in public, so I never saw the harm. Not worth the fight.
I'm sorry to hear about neighbors not inviting your son to their parties. That can be hurtful. Does he understand that? My biggest worry is my daughter will be treated badly or left behind. Maybe it will only bother me and she will not care at all. Do you find your son mostly has meltdowns in public, or at someone's house, or when you have people over? When we are home, she only has mild tantrums, mild to me at least, but when people come over, she is the worst. I have to put her in her room to get it out of her system. We have gotten to the point where we can deal with her meltdowns, but we haven't gotten over the embarrassment when she has one in public. Mainly at the gym because I go there all the time. I feel ashamed at myself when I feel the resentment. i have gotten a lot better since I have come to the realization that she may be autistic. I have been less resentful and more patient. I did have a break down. It lasted a whole week and even after that I was pretty blue. I am over it now and love her for who she is. She a beautiful, silly, lovable, little girl. I am so lucky to have a great family who love her for who she is. She has a little brother who she adores. I'm training him to protect her. He is just like his daddy, so that shouldn't be too hard.
Thank you so much for replying. We should write each other again. I would like to hear more about your son. It's hard when you don't know someone who can relate. This is why I like EP. You can find people with similar stories. Thanks, C