Help! Are there any women in this Community with ASD

Not ASD myself but DCD. However my 16 y/o SD was diagnosed in May 2017.

High verbal skills has masked her issues and her sister too who got an ADHD diagnosis in March 2017.

Hi QuirkyFriend

a challenging age for your SD...and a great time to be diagnosed just before her GCSEs! Is she and little sis coping ok and how good is her school at supporting,,,,and how confident are you in doing the same ..

We are in New Zealand and this is an emerging situation also involving the family court as mother resisted diagnosis even when SD16 was asking for assessment.

Her school is useless and because she mostly lives with her mother behaviour has got worse since diagnosis. Were she with us we'd be well down the track of intervention. Her school failings are heading her rapidly to NEAT status.

Her ADHD sister is 20 and arrived in our town 1 year ago underweight and off the scale anxious and acting out. It's been like working with a feral kitten, even loving gestures were seen as threats in the early stages. Breakthrough happened after a significant health scare where SD20 had to get help to get some serious problems addressed.

I'm a health professional and know how to navigate complex systems. SD20  had to trust me to get her over each barrier to access care. This gave me and her Dad observation time (they had been badly alienated since she was 13). I suggested SPELD for dyslexia first and from the results pushed for ADHD screening - damn challenging in a cash strapped health sector with an "adult" patient.

With medication and very soon therapy the difference has been AMAZING. I'm so proud of her. Too many successes to list. Big ones: re-entry into Education, normalised weight and a warm relationship with her Dad (who also has ADHD, so life is fun in my household).

I am fortunate that I come from an alphabet soup family, so my family knows about how to work with diversity. My Mum, bless her, has stepped up on grandparenting for both girls even though SD16 is very unrewarding.

I am also fortunate a good friend is a retired psychiatrist and she keeps me focused on the potential for change even in the face of great adversity for SD16...so I keep pushing (such as learning how to access funding)

Congratulations on the new contract!!! I guess your parents belief in you has lead to you developing your own strong self belief and determination.

being a fighter can be tiring though...as your pointed out

My ability to deal with the system is in part due to my experience of disability as a child.

My parents did not see my neurological deficits as a reason to stop me participating in physical activity. If it took me 5 times as long to learn to ride a bicycle, that didn't mean I couldn't, rather it meant I was going to need to have encouragement for longer to support me to achieve.

The only noticeable deficit now is my handwriting and that I have negotiated adaptions for my education at university and work subsequently.

Doing this for others feels good, my biggest challenge is recognising if I'm getting too fatigued to negotiate with neurotypical administrators with a calm mind. But I'm getting better at knowing when to stop.

A long term special interest of mine is health literacy: reshaping health systems to support engagement by all. Turns out special interests can turn you into an expert.Today I got a new contract which demands I use this for public education.

I guess I'm lucky my family believed in me. I don't know how I would have learned otherwise.

It sounds like you have your work cut out but I'm pleased that you have the support from family, friends and colleagues...those that tend to fair best always seem to have a fighter behind them to give them a voice and gain access to the support that they so readily need in order to give them a sturdy foundation and strategies to take them forward in life.

what for me has been quite telling in this community is the amount of people "reaching out" to state - "this is me" but can't seem to articulate their wants and needs going forward as the support is not simply there or they don't know how to access it. It is like being stood in front of a locked door but not knowing how to ask for key to unlock it and fear of what lie behind said closed door.

Empathy abounds, nevertheless...and we all reach out to show solidarity to others...which is a comfort and we all recognise that each of us have our own locked doors....we speak but don't seem able to communicate very well...if that makes sense

Hang in there....

I've got a colleague who is a Gestalt trained practitioner and who has worked with vulnerable youth. She is willing to see SD20 on the disability funded counseling rate and if they don't gel after 2 sessions she will facilitate getting another therapist to work with her. SD20s psychiatrist was a bit reluctant to agree therapy but I pointed out that we could not be seen as unbiased about her mother's behaviour, so the risk of not having an independent supporter outweighed the risk.

We had a significant disclosure of within family violence from her last night which could have been used to remove SD16 from her mother in the UK, but our safeguarding is not anywhere near as sophisticated. 

My family joke is we all sigh with relief when the babies show a sign of neurodiverse behaviour because we would not know how to raise s neurotypical child

Access to appropriate therapy is also a hot tinder box that very few dare to try and open 

So pleased that there is positivity amongst the adversity of your family. It is such a lottery for people in terms of who they encounter and their open-mindededness and experience.  I get frustrated in my job to see staff relieved to lose a student but I am so frustrated as it means that we have failed and not met their needs... this thread has certainly taken us all on an interesting journey :)

So pleased that there is positivity amongst the adversity of your family. It is such a lottery for people in terms of who they encounter and their open-mindededness and experience.  I get frustrated in my job to see staff relieved to lose a student but I am so frustrated as it means that we have failed and not met their needs... this thread has certainly taken us all on an interesting journey :)

Congratulations on the new contract!!! I guess your parents belief in you has lead to you developing your own strong self belief and determination.

being a fighter can be tiring though...as your pointed out

My ability to deal with the system is in part due to my experience of disability as a child.

My parents did not see my neurological deficits as a reason to stop me participating in physical activity. If it took me 5 times as long to learn to ride a bicycle, that didn't mean I couldn't, rather it meant I was going to need to have encouragement for longer to support me to achieve.

The only noticeable deficit now is my handwriting and that I have negotiated adaptions for my education at university and work subsequently.

Doing this for others feels good, my biggest challenge is recognising if I'm getting too fatigued to negotiate with neurotypical administrators with a calm mind. But I'm getting better at knowing when to stop.

A long term special interest of mine is health literacy: reshaping health systems to support engagement by all. Turns out special interests can turn you into an expert.Today I got a new contract which demands I use this for public education.

I guess I'm lucky my family believed in me. I don't know how I would have learned otherwise.

It sounds like you have your work cut out but I'm pleased that you have the support from family, friends and colleagues...those that tend to fair best always seem to have a fighter behind them to give them a voice and gain access to the support that they so readily need in order to give them a sturdy foundation and strategies to take them forward in life.

what for me has been quite telling in this community is the amount of people "reaching out" to state - "this is me" but can't seem to articulate their wants and needs going forward as the support is not simply there or they don't know how to access it. It is like being stood in front of a locked door but not knowing how to ask for key to unlock it and fear of what lie behind said closed door.

Empathy abounds, nevertheless...and we all reach out to show solidarity to others...which is a comfort and we all recognise that each of us have our own locked doors....we speak but don't seem able to communicate very well...if that makes sense

Hang in there....

I've got a colleague who is a Gestalt trained practitioner and who has worked with vulnerable youth. She is willing to see SD20 on the disability funded counseling rate and if they don't gel after 2 sessions she will facilitate getting another therapist to work with her. SD20s psychiatrist was a bit reluctant to agree therapy but I pointed out that we could not be seen as unbiased about her mother's behaviour, so the risk of not having an independent supporter outweighed the risk.

We had a significant disclosure of within family violence from her last night which could have been used to remove SD16 from her mother in the UK, but our safeguarding is not anywhere near as sophisticated. 

My family joke is we all sigh with relief when the babies show a sign of neurodiverse behaviour because we would not know how to raise s neurotypical child

Access to appropriate therapy is also a hot tinder box that very few dare to try and open