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Teen DD, ASD L2 and NDIS


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#1 Kafkaesque

Posted 23 May 2020 - 09:09 PM

I have just sent off my NDIS application for my DD16 who was dx this year. I have no idea what therapy we could possibly access. All we have ever done is psychology which has been entirely unsuccessful.

She is “high functioning” and from the outside and in brief daily interactions appears normal and while she is pleased in many ways about her dx she is still not keen on therapy or really anything that involves anyone other than me.

She doesn’t have friends, can’t work, even with her dad in the family business and doesn’t attend school.

So all that waffle and what I really want to know is what therapy is there for teens who for the most part look and act like normal teens but in reality can’t deal with life in general.

#2 Silverstreak

Posted 23 May 2020 - 09:40 PM

My DS has a similar diagnosis and is on the NDIS, but he is not yet a teen. Some ideas though:

An OT could be very useful in developing various strategies and scaffolding what your DD might find particularly difficult. Eg routines around self care, getting organised in the morning, organising work / study space, setting up her bedroom in a particular way to make things more comfortable, perhaps any gross or fine motor skills your DD might need help with.

I know that you said your DD is not keen on therapy per se, but perhaps she could try an initial appointment (and you attend with her) and see what you both think.

Your DD might be a particularly visual learner and could benefit from visual cues such as laminated charts to remind her to do certain tasks in a certain order, or possibly a computer program set up with various calendars or reminders.

Your DD might benefit from having sensory feedback such as a weighted blanket, wriggle cushion on a chair, sensory sack to snuggle in, cosy corner etc if she gets overwhelmed etc.

A psychologist or counsellor (preferably one knowledgeable about female teenagers with ASD) could be a good support too, as they would be an independent person for your DD to chat to, work through various social issues and learn various strategies.

For our DS, our OT works on gross and fine motor skills and moving his body in certain ways, but as he gets older, his needs will no doubt change.

The NDIS might also be able to fund various social group activities that your DD could benefit from, or various sports e.g. swimming, basketball.

Not sure what your DD's communication is like, but our speech therapist works on DS' communication, pronunciation, using his communication device, taking turns, eye contact, listening, building vocabulary etc.

As your DD is 16, I'd also be looking at funding areas that would assist independent living skills. Eg getting a learner's permit if possible, cooking lessons if she's interested, support relating to completing Year 12 or VCAL if she wants to finish school.

I seem to have rambled on! Hope some of this is useful to you and feel free to PM me. We've now been living with an ASD diagnosis for five years and been on the NDIS for a year.

Cheers, Silverstreak.

#3 Kafkaesque

Posted 23 May 2020 - 09:46 PM

Thank you so much. OT and speech are fine. No issues with any of that. In some ways I wish there was as then I could work at “fixing”. It’s all invisible stuff that she can articulate. The driving is an excellent idea as we have been really struggling with confidence and she really needs someone other than me supporting her. As is funding participation in something. Gymnastics is the only thing she is willing to do, I wonder if that would be funded?

#4 Silverstreak

Posted 23 May 2020 - 09:51 PM

I would definitely ask, I've known of children being funded for swimming. I would be framing it in terms of helping with focus and self regulation.

#5 BusbyWilkes

Posted 23 May 2020 - 09:55 PM

NDIS isn’t just about therapy. It’s about working with PWD and their families to achieve goals that are meaningful (to that individual).

Can’t work, no friends, no school. Is this due to anxiety? Other reasons?

So, for example, long term goals may be
* to be employed.
* to develop relationships/friendships through being involved in her community.

If she currently doesn’t leave the house/interact with others outside the family, these may seem huge. Some shorter term goals may be
* to establish what activities she is interested in engaging in (may need psych or OT to assist with this process).
* to participate in a community activity without direct family involvement - as a 16 year old would mostly be doing. (Support worker on weekly basis to pick her up/take to activity/bring home, possibly SP involvement looking at specific teaching of social rules, conversation skills etc)
* to establish a morning routine - important re job readiness.
(work with psych or OT to work out capacity to complete tasks eg waking up, showering, getting dressed, making breakfast etc)

IME, quite a few people who haven’t previously been receiving funded supports have, under NDIS, been funded for a functional needs assessment, which helps to establish what her needs are.

Obviously, your DD needs to be on board with accessing these supports, but a good “therapy” team now could make a great difference to her (and your) life.

#6 Kafkaesque

Posted 23 May 2020 - 10:25 PM

Thanks Busby

That makes sense. I just keep thinking of therapy being the usual psychical things. But what you say makes sense.

So very overwhelming.

#7 BusbyWilkes

Posted 23 May 2020 - 11:03 PM

It is overwhelming for many, so you’re not alone.

IME gymnastics classes wouldn’t be funded, but physio sessions to develop skills to support her participation in gymnastics (if needed) or a support worker to take her and/or assist her to join in would be. Rationale being that you would pay for gymnastics for all your kids, but the extra support required due to the disability is what is funded.

Other ideas based on her age
* using public transport
* meal prep
* protective behaviours (so she is less vulnerable when in the community). There is a great organisation that provides support re this. PM me if you want details.
* supported work experience - if you have a business that your DD has an interest in, OT and support worker could support her in gaining work experience. Eg looking at what is involved in the job, breaking it down into learnable chunks, maximise using her areas of strength etc

Good luck. You don’t need to have all the answers to start with. It’s a marathon, not a sprint! You can apply for a review for additional funding throughout the year, if new areas of need become apparent.

#8 MsLaurie

Posted 23 May 2020 - 11:14 PM

Do you know what she would like to do if she could? NDIS is meant to be about helping people live the lives they want. Does she have any particular areas of interest or skill? Perhaps some targeted support could help translate that interest/skill into something life-long, either as an interest or a career?

#9 Kafkaesque

Posted 23 May 2020 - 11:24 PM

She has no interests outside of gymnastics and watching AFL. She doesn’t really like people although knows she is lonely.

Functionally she can can organise herself and knows the theory behind working and participating in things but crippling anxiety and being overwhelmed stops her from being able to.

#10 Acidulous Osprey

Posted 23 May 2020 - 11:38 PM

A functional assessment by a good OT can support her to be more able to participate.

A support worker to help her participate in things can help with the crippling anxiety and the overwhelm.  You can employ a support worker similar in age to her who doesn't wear a uniform to work with her on this.

Gymnastic lessons are unlikely to be funded outright but the difference between normal lessons and disability lessons can be.  A support worker can be funded to assist her to attend.

#11 Kafkaesque

Posted 23 May 2020 - 11:46 PM

View PostAcidulous Osprey, on 23 May 2020 - 11:38 PM, said:

A functional assessment by a good OT can support her to be more able to participate.

A support worker to help her participate in things can help with the crippling anxiety and the overwhelm.  You can employ a support worker similar in age to her who doesn't wear a uniform to work with her on this.

Gymnastic lessons are unlikely to be funded outright but the difference between normal lessons and disability lessons can be.  A support worker can be funded to assist her to attend.

Thanks this is all so helpful.

I don’t think she will be up for a Support worker. God I would love it to have the pressure off of me.

So a functional assessment sounds like we need to do one. I just think she will come back as “normal” as she says the right things. Just can’t put any of it into action.

#12 Acidulous Osprey

Posted 23 May 2020 - 11:55 PM

I talk to the OTs doing the assessment and play an active role in it.  If my PWD says they are easily doing something I know they are not, I'm fine with having a quiet word that this is not how I see it and how can we support them for the best?

A good OT will be able to assess that she says all the right things but in reality she doesn't/can't do them.

Finding the right SW is key.  We've had some shockers but currently have people who just fit in and do the job well.  Even if it starts with the SW coming over and having a cup of coffee or watching a movie.  Can you be honest with her that you need to see her develop support outside you?  I've had that conversation with my older son a few times.

#13 Kafkaesque

Posted 24 May 2020 - 12:15 AM

Yeah we have talked about the fact she is dependent on me. Prior to her ASD dx during a mental health hospital admission it was something the treating team wouldn’t let up on. They wanted me to not visit her in hospital so that she could learn to mange without me. Yeah great idea. I’m still traumatised from that admission so god knows what she feels about it.

#14 Acidulous Osprey

Posted 24 May 2020 - 10:46 AM

God that's awful of the hospital staff!  Older son did an admission a few years ago and it was horrible.

#15 José

Posted 24 May 2020 - 11:09 AM

View PostKafkaesque, on 23 May 2020 - 11:46 PM, said:

Thanks this is all so helpful.

I don’t think she will be up for a Support worker. God I would love it to have the pressure off of me.

So a functional assessment sounds like we need to do one. I just think she will come back as “normal” as she says the right things. Just can’t put any of it into action.

The assessment isn't really about if you know what to do.  It's about if you actually do it. For a young person their parent is often involved in the assessment.

#16 Kiraffe

Posted 25 May 2020 - 08:32 AM

Same age DD here on NDIS for same reason.
SW - we called it a mentor and that was the only way she would accept this idea. Often now the SW is the only reason she will leave the house. It is great. They go to shops, beach, cafe, back to SW house and cook etc. DD was very opposed to the idea at first and now she really looks forward to it.

We tried OT, (with a goal of trying to reenter school with OT help); did art therapy (DD liked this for a year); and we continue with psychology. As it is now NDIS funded we can do fortnightly psychology instead of the 10 a year under MHCP. I'm thinking equine therapy might be a go this year.

Also we received funding for equipment which was helpful.

#17 Bethlehem Babe

Posted 25 May 2020 - 09:20 AM

Keep in mind, like anything, there are crappy OT’s and brilliant ones and ones in the middle. Some that fit one person won’t fit another.
Our OT is my favourite therapist. My boys have very diverse needs and she gets both of them. But not just that. She also manages to make me feel like she loves seeing them and really enjoys our appointments.

#18 PocketIcikleflakes

Posted 25 May 2020 - 02:49 PM

At the age of 16 of recommend her and you joining groups lead by autistics. There a few on Facebook. I'm happy to pm you the ones I'm part of if you like.

Given she is struggling to articulate her experience to others it may help for her to read others experiences. It's very common for autistic teens and adults to struggle to recognise their own needs but recognise them when others describe their own experiences.

It's also common for autism to be misdiagnosed as mental health issues so there will be plenty of people who would understand what your DD and you have been dealing with.

ETA that you may be right about results from a functional assessment. Many adult autistics automatically mask in many situations to the point that they need to relearn their sensory and functional needs before they can address what will actually help them. Again, autistic led groups can be really helpful with this because if your DD can see similarities to her own experience it may be easier for her to recognise what happens for her during these assessment situations and access some ways of assessing her own needs in a situation she's comfortable in. Hopefully that will allow you both to have a better idea of her needs before going into a therapy session so that there's a starting point to build from?

Edited by PocketIcikleflakes, 25 May 2020 - 03:02 PM.


#19 Chaotic Pogo

Posted 26 May 2020 - 12:55 AM

Many adult autistics automatically mask in many situations to the point that they need to relearn their sensory and functional needs before they can address what will actually help them


i just had a lightbulb moment, thankyou.




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