Today I am grateful the time I spent with other parents who have children who are 12 to 15 who have Autism Spectrum Disorders. While our kids were in a skills and social group sessions, under the care of professionals, rather then sit for 90 mins in the reception area, we managed to get away for a coffee and a chat.
All of us, kept our phones out of our bags and on the table, just encase the clinic needed to contact us, or in case our other kids needed us. We shared survival tips, stories of heart ache, frustration, small victories, what we have dealt with. Things which we have had to endure which usually we can’t talk to other parents about as it’s upsetting for them but is just part of our narratives.
It was also reassuring to share the things our kids do and did have in fact in common, things which usually separate them from other kids. “Oh, yours does that, yes mine did that to, or still does it, ” cue story about that issue and how we try not to laugh or roll our eyes, or get angry when we have to deal with it. It really normalises our experience as parents, which is so needed. We are not alone in struggling to manage our teens and trying to teach them to self manage.
One thing which came up, again and again was that, our lives would be easier and that of our children would be less miserable if ‘normal’ kids were not as cruel. We have enough to be dealing with, with out the damage to our children’s self confidence, self esteem and self worth, which comes from their peers. Esp in school environments, which we have to send them to, which they can come to view as not safe places to be in.
So one of the things which happened over the last 6 weeks is that we finally got a Dx from Blanchardstown CAMHS in relation to my daughter. When the many, many pieces of diagnostic information and reports were put together is has been concluded by the team that she is on the Autism Spectrum and falls in to the criteria for ASD. ASD, Autism Spectrum Disorder is the new term being used as Aspergers is being retired as a clinical term but it to my mind Aspergers is useful but I can understand why it’s being no longer used.
Girls who are on the higher functioning end of the Autism Spectrum present differently and are judged differently due to how they are socialized and our expectations of how children should behave based on generalizations of binary gender. It is more acceptable for girls to be shy, to be quiet, to be obsessive about certain things like my little pony.
One of the sites I was given as a resource which I have found to be very helpful is
Women and Girls on the Autism Sepctrum.
The difficulties in the diagnosis of girls and women arise if clinicians continue to use the narrow definitions set out in the International Classification Systems. It cannot be stressed enough that diagnosis and full assessment of needs cannot be carried out by following a checklist. Proper assessment takes time and detailed evaluation is necessary to enable a clinician to systematically collect information which not only provides a diagnostic label, but more importantly, a detailed profile of the person.
So diagnosing girls is harder do to gender bias, I had been concerned that due to how we run the house hold and explain things to my son and there for to my daughter that she wasn’t on the spectrum but rather picking up on his behavior but it turns out in supporting them both in similar ways we had been helping her cope so that we didn’t see as many melt downs, so it took longer to even get her on the list to be seen by the team and then it took many many months for them to have enough to confirm the diagnoses.
The research into women and girls on the spectrum has really only happened over the last 5 years so very little of it was around when I was desperately trying to educate myself about Autism after my son’s diagnoses 7 years ago. What I have been reading over the last 3 weeks has brought into focus more for me certain behaviors which is a good thing as I can now work with my daughter on them, esp things like this.
In our society, girls are expected to be social in their communication. Girls on the spectrum do not ‘do social chit chat’ or make ‘meaningless’ comments in order to facilitate social communication. The idea of a social hierarchy and how one communicates with people of different status can be problematic and get girls into trouble with teachers.
Yep, hopefully the copy of the report which will be going to her school will also help teachers to adjust.
It’s funny the challenges that come with having a kid on the spectrum but with them also come victories and hope.
Yesterday as I am swamped with this cold, and my co parent was gone out, I made a list of bits for D to go and get for me at the local shop. It’s only 5 mins away and he is 13; but on the list was something he’s not bought before and would be a challenge for him. Due to his ASD (Aspergers Disorder) I do have to push his comfort levels to get him to do things he’s back out of otherwise.
In this case it was to go to the fresh baked bread display and get one of the Vienna rolls he likes so much. Thinking about it made him nervous, he has in his head all the things which can go wrong and people might be looking at him. This sort of stuff is par for the course with him. He came back with out it, but with everything else on the list, so I was happy enough.
The he said ‘Damnit, Mam can I go back over and get the bread? I failed last time and I really like that bread, so I want to go try and get it again’. I was so proud, of him and even if he didn’t come back with it, the fact he pushed himself to go over and even to pass by the people he just passed by on the road and to see the shop assistants again in such a short space of time is a huge step for him. A year ago the idea that people would think it odd to see him going back over the shop or that they would think he failed and so had to go back was too much for him to bear.
So off he went and he came home with the loaf and after two slices settled down to do his homework. I am so pleased and proud, I know it’s just a loaf of bread but the fact he choose to go back over and did it with no fuss or no prompting means a lot to me, makes me more hopeful for him living a fuller life and not being stuck in the same routine all the time.
My Grand Dad used to say, we don’t own our children, we are entrusted with them for a short time and we teach them their first steps and one day they will walk way from us to their own lives.
I pretty much take the fact that I have to prepare and skill up my kids to be able to walk away and start their own lives independent of me as my mission statement. It was before I knew my son was on the autism spectrum, and it hasn’t changed. Yes it means that it’s more complicated, there are slightly more hurdles and certain things are harder on him and us as a family but days like yesterday give me hope and let’s me know I am getting it right, well at least some of the time.