Your Thoughts Requested: Support for a Mom Raising a Girl with Autism
Sunday September 23, 2007
There's no question that it's tough to raise a child with autism. The usual parent communities are closed to us - and many of us feel disconnected from family and old friends who just don't get what life on the spectrum is really like. But for most of us, raising boys on the autism spectrum, at least there are the parents of OTHER boys on the spectrum to turn to.
For parents of girls on the autism spectrum, though, there are even fewer people who can relate. And, in many ways, raising a daughter on the spectrum can be tougher. Girls are often the ONLY girl in a specialized autism class. They may be the only person in their class dealing with menstruation, budding breasts, and everything that goes along with the approach of womanhood.
Where can parents of girls on the spectrum turn for support - especially when things get rough? This is the question raised by a reader who is working with the mom of a daughter with autism:
I think my patient needs somebody who's been there to give her some realistic expectations about raising a daughter with autism. She told me everybody's got boys, and that seems to isolate her even further. I'm really worried about her.Do you know of active forums or organizations that specifically target the needs of parents with daughters on the autism spectrum? If you do - please let us know!
Comments
I’m not 100% sure of the best sites but also be sure to check for PDD-NOS sites as that is what ASD’s are sometimes referred too. Also, consider getting your child a sleep study to check for sleep apnea. If you have insurance this is typically covered.
Hi,
I have a little girl on the spectrum and have met a couple of other families with girls at different ages.
I feel good about our situation now but it wasn’t easy. Having just established toileting at 5 years, I think as she gets older I’ll be able to deal with the issues as they arise.
I set up a web site, we are in Australia, and in the forum we have good links to other people and places that may help.
Regard SP
Check out this forum - there are a lot of parents some with twins, some with girls…some with both.
http://www.autism-pdd.net/forum
Hey, I am not sure where to get support, but I am SURE WILLING to become part of a forum. Mom of two girls, one LD and one Autistic. The autistic one is six, and I am already panicking at the thought of puberty. Anyone want to start a discussion about it all? I am willing to join.
Check out the articles written by Rachel Evans’s they are very good there some links to it in my site.
Esteban
I would love to form some sort of group, as well. My little girl is just about to turn five and has autism. We are a statistical oddity, as our son is 2.5 and is developing completely normally.
I belong to a fantastic online support group, as well as one IRL. But I would love to start a group that focuses on the issues of girls with autism.
Hi Lisa,
I would also love to know of a forum, or if one is started. Michelle is 13, with severe autism, severe medical issues and just began menstruating. I wish I could offer help instead of ask for help!
Little girls within the spectrum are very special. My daughter is nine years old and has autism. She is high functioning, and she is developing very fast. I understand your worries though. She is developing rapidly, and it takes all that I can muster not to leave my job and spend time helping her to make it through life, but I can’t stop working. I worry a lot, but I pray more, so the worry subsides with trust in God. It is not going to be easy, and I wish that I could tell you so, but I feel compelled to tell you to be strong, and make sure that you are very attentive and a bit protective regardless of what others who have not experienced your “walk through life” will tell you. I am not posting this to discourage you, I just want to keep you on alert status, and keep it real. There are many interactive websites where you can meet people who will help you to find ways to address each issue. Try cafemon, I find that a true relief, because they have a section for mothers who have children with autism posting and sharing ideas. God bless and pray more than worry will see you through. She will be fine, and so will you.
I have a 16 year old daughter with Aspergers. It’s been a long journey to this diagnosis becasue she’s very verbal and very bright in many ways. Nevertheless, she has severe anxieties and mood problems. These problems seem to require most attention. Traditional treatments for anxieties and depression haven’t been very effective so far. I think anxieties are common for girls on the spectrum.
I have a 9 year old daughter who’s autistic and I found a great book: Taking Care of Myself by Mary Wrobel. It covers all the basics of hygiene (including menstruation). I home school my daughter and I am using it as part of my curriculum this year. It’s written in a “Social Story” format. Concise. I highly recommend it.
I have a daughter age 15 with PDD-NOS. She is very high functioning and verbal, but with quite deficient social skills, which is, at this time in her life, her biggest difficulty. The first five years of her life, before toilet training and before she became verbal (besides echolalia) were challenging. After that, less so, but we were constantly dealing with social difficulties, resulting in her being suspended from school on a few occasions. She has few friends, and the one or two she has gotten have been in the past year or so. Due to her social difficulties, she hasn’t been invited to parties or sleepovers or any other normal girl activities, and she rarely talks on the phone to anyone. Puberty started at age 10, and menstruation at about 12. I tried to prepare her for it, when she would ask questions about why “these” hurt, what she could expect, etc. It took a couple years, but we got the hygiene of that worked out. She’s actually rather fastidious now. I don’t have any friends in support groups who also have girls with autism, but I am fortunate to know many moms of boys with autism. These moms are warm and welcoming and I don’t feel isolated. Sometimes you have to make the best of it.
My name is Gayla Smith and I am a 60 y/o Grad Student in Rehabilitation Services at the Univ. of N. Tx. I have always been fascinated in Aspergers and would like to offer my services on research of new treatments, drugs and any other matter that you may require. My thoughts and prayers are with a wonderful mother and her wonderful daughter.
Both of my daughters have been in autistic preschool classrooms as reverse-mainstream students. My 7 year old was great friends with a little girl who is autistic until the family moved away…I saw great benefit on both sides of the girls’ relationship. My 4 year old is now in the same preschool and has 2 autistic girls with her and she has really bonded with one of the girls.
The major benefit that I have seen for my girls is that they do not have the typical attitude that seems rampant among kids regarding those are “different.” In fact, my 7 year old makes sure that her friends from preschool are included in activities that occur at school.
Wow, Sooooooo glad to find you ALL!! I have no one to speak with about my beautful PDD-NOS girl. She is almost 9 and has a twin brother thats non-Autistic.She has a few words but her non verbal comunication is amazing!I am an Artist with many talents but not spelling
Hope you will put up with me!! She was toilet trained at 6.I live in South Jersey (would love to start a play group.)We live near the shore.
I am the mother of a 13 yo girl with severe autism, and I also work at a special needs school, with many girls that are going through puberty. I just want to let you know, that while challenging, it is not as scary and impossible as you think it is when you’re approaching it. My biggest struggle so far is keeping her shirt on her when it is hot out and getting her used to wearing a bra!
i also have a 10 year old daughter with autism and learning disability. i am a member of this e-group “autism in girls”. we all share thoughts, experiences, joys, worries, achievements and all. hope she can join us onboard.
This group is for parents and carers of children with ASD’s.
DIAGNOSED/UNDIAGNOSED
all are welcome
http://groups.msn.com/AutismAndAspergersInTheFamily
I am a mum of 6,four have autism
I also have aspergers syndrome.
the abpve group is my own personal forum,you are welcome to come see if it suits your needs
http://groups.msn.com/AutismAndAspergersInTheFamily
Morning all.
I have a 3 1/2 year-old daughter with a working diagnosis of higher functioning autism. This is likely to become a full diagnosis when she starts pre-school after Christmas to facilitate Statementing.
I am amazed at the lack of ‘first hand’ information about this disorder in girls and this site is a welcomed surprise. For example, I wasn’t aware until now that the expected age for toilet training is likely to be 5 and beyond!
I hope this place grows and gains a few more ‘followers’ - living it is certainly different from reading about it and hopefully we can all benefit from one another’s experiences, tips and advice.