Asperger's Mum but failing....help

I think the GP isn't bothered because she is coping at school, so no point in approaching school either really.  Its mainly the one's I've mentioned, she is very shy around new people and relies on her sister a lot.  She is quite obsessive about one particular girl and isn't interested in knowing others, although I have had other children around.  She is however able to play fairly co-operatively although she is quite passive.  I think its just early days and sadly if she does have AS it wont be diagnosed until something goes wrong at school.

Many thanks

Oh, sorry . I thought from your original post that she was diagnosed.  So, why is the GP refusing a referral?  Have you spoken to the school ? What other traits and behaviours is she exhibiting that make you suspect AS? 

Hi

Thank you for your reply, my daughter doesn't have a diagnosis, although I guess you are right she certainly has some traits, another one being how much she adores her best friend and wants to dress exactly like her.  However the GP isn't making a referral and school would laugh at me because she is no problem to them.  I will look at some autism strategies though, thank you.

Maaya

Hi

Thank you so much for your reply, it was very helpful and encouraging.  Yes, I constantly worry about how my behaviour affects my girls, particularly my anxiety and meltdowns which i am trying to reduce.   It used to be that just work and outside of home were the places where I had to pretend, but now its at home too and that is exhausting.  

It sounds as though you have discussed your Asperger's diagnosis with your boys, which I guess I will need to do at some point.  And yes I am trying my best, I just hope it is good enough for them.

Many thanks again

Maaya

Please try not to think of yourself as 'failing', maaya.  Autism at any level can be a very difficult and challenging condition for families to have to deal with.  Her perfectionism and sense of fairness can be quite common.  Losing a game could be a very big deal in that sense.  She's very young, but Aspies generally have a strong sense of what's right and wrong, and things can often be very 'black and white' in that regard. We tend not to like like lies, deceit, cutting corners with tasks, etc.   Children at that age anyway can have a very keen sense of what's fair and unfair, but it can be more sharply focused with someone with Asperger's.  Sometimes, negotiation is needed. She may not understand straight away, even with a proper explanation, that she is being treated with equal fairness.  Does she ever explain why she feels she is being unfairly treated?  Strategies such as 'Social Stories' can be used to help autistic people to understand, for instance, that it's alright for other people to win games sometimes, or for other people to get special treats on occasions (like birthdays).  These take a gradual approach to the processes involved, and help autistic people to assimilate and 'accept' the situation.  This link explains more:

Social Stories

The hair washing thing - again, does she say what she doesn't like about it?  It could be a sensory issue she has: water too hot or too cold, or water falling on her head in the first place.  I work with people with autism (low-functioning, though I hate the term!) and they can be very sensitive to certain things like that (as can all autistic people, of course).  One refuses to have her hair combed at all.  Another refuses to wear undergarments or socks.  Another hates any contact with water at all.  These are just thoughts.

Well-behaved at school and disruptive at home is again very common.  Often, people with autism will find school (as I did myself) an extremely stressful and anxiety-inducing environment, and will hold it all in, maybe for fear of repercussions  - only to release it all later in the more familiar environment at home, among those closest to them.

Have you sought any advice?  Do you have any input from a behavioural therapist, for instance?  It will depend upon provision in your area.  Some areas - like where I live, in Kent - have special autism trusts you can contact, and they'll have Family Support officers who could advise.  You're certainly not alone in this regard.

Check out here to see what might be available where you live:

Autism Services Directory

Also, there's information elsewhere on this site, though you may have already checked:

Family Life

There are various links - including to things like Challenging Behaviour.

You might want to check out some of these publications, too:

Books and Resources for Families and Carers

Best wishes,

Tom

Hi Maaya

I'm mum to 2 older teenage boys and I'm aspie too and I feel your pain!

I have found parenting fulfilling but beyond exhausting and I often look at other mums and wonder how it is that they didn't seem so shattered and anxious about their kids all the time. I realise now that my mind is having to work so hard to cope with and understand everything that motherhood throws at me that it was no wonder I feel overwhelmed sometimes. The other things that I constantly worry about is how my behaviours through all of this has already affected or might affect my boys. When everything is a struggle that you have to work really hard at, and while you genuinely find laughter, pretend, joking around, hugs and cuddles and "banter" hard to do then you wonder what message you are sending to them....life should be pleasurable after all, and because I have so many struggles (that I try to pass off) then the boys my think its normal for life to be an uphill struggle and stress inducing when it's not really like that.

That said, they don't actually see me as a struggling, anxious mum - they see me as hilarious, open, honest, supportive, hard-working, sensitive to their needs etc etc. We have great fun and they are both super boys who are both very understanding of Asperger syndrome!! That is the weird thing and the reason I'm writing this for you - my experience, my perception of me as a mum and their experience and their perception are very very different! They love me and although they both moan (lots) when life's hard I  remind them that life being hard sometimes and life being easy some of the other times is the right balance and to be expected. You manage to be there for some of the times Maaya and that's the right attitidue - you are doing the very best that you and that is MORE THAN ENOUGH. There will be times that you have to let someone else help and go easy on yourself as we are all allowed to be good sometimes and absolutely not so good other times

Oh, does this even make sense?

Sending you lots of love and strength xx

Kath

She is 6, the triggers are quite varied;  losing a game, hair washing, things not going as she thought they would, sometimes she just gets through the doorway from school argues with her sister and boom! She is very keen on fairness and if she feels she has not been treated like her sister then that can cause it too.  I am really not dealing with it very well and I wonder if that has made it worse but I am at a loss as to what to do.  There are no real problems at school she is hardworking and very well behaved.  Although she gets anxious about her work as it has to be perfect.

Hi Maaya,

Can I just ask a couple of general questions.  What, in your mind, seems to be the trigger for these episodes, and does she communicate these triggers to you?  Is she like it at school as well, or just at home (assuming that she is of school age)?

Tom