15 years old and Pathological demand avoidance

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Edit: I mean Pathological demand avoidance

I haven't posted lately - life has been to stressful.

I am quite sure that my three children are on the spectrum - but I have been denied an official evaluation and can not afford a private one as I am a single mother. The three children show typical signs of (high functioning) Asperger which I have and several other people in my Family have (Asperger and Tourette Syndrome runs in the Family).

My fourth child have always seemed more "normal" to me, more social (normal in comparison to my other children and my self). Several things now make me suspect some traits that looks like PDA (no way in he.. I can get a qualified evaluation).
*There has always been meltdowns
*Social skills seemed good but DC did not understand that other children did not want to play the same games as DC and DC often misunderstands what other people want from DC.
*Anxiety, as a small child eating in front of strangers was impossible
*several hypo and hyper sensitivities
*very controlling - needs to be in control and controls and dominates minor siblings
*DC started avoiding answers to difficult questions, lying, saying that stuff will be done and then nothing happens
*When (we) try to make a written assignment, suddenly it is necessary to eat, sleep, become extremely unengaged etc.
* Extremely good at distracting tactics (including teachers)
*Sudden illness if demands come up (hurt legs, stomach aches etc.)

Due to a school change (necessary due to very low quality school and severe problems in class) some problems have emerged. Well they are not really new I was just not aware of them. I have always been told that DC did well in school, but when the new school gave homework DC could not write a single sentence down. In the old School they had never had a written assignment (7 grade!!). DC also tested for a slight dyslexia. Basically there is an inability to write any text unless I dictate all the words (normal intelligence maybe slightly above normal). The avoidance really kicks in when we talk about writing anything down.

I am not saying that it is PDA, he might not even be on the spectrum (but some traits are pretty close and DC identifies as "different"). I just think that thinking in PDA strategies might help DC. I have started reading up on PDA (I am pretty good at reading up on stuff ) but am a bit flummoxed here.

How do we get on with the writing?
How do I get DC to do things?
I really only have one year before final exams if DC does not pass those it will be really difficult to get any education.
DC can only take very little pressure - and I am afraid to introduce secondary "things" like stress, severe anxiety etc.

Sorry, I am a bit frustrated at the moment and feel very, very alone with this.

That sounds really hard.

I was convinced my daughter had PDA but she didn't... instead she has a straight AS diagnosis. She was diagnosed at a large centre that specialised in difficult presentations and girls. I was told PDA is pervasive and can't exist I just one setting and that it is extremely rare and is often misdiagnosed. I was also told PDA is fairly easy to spot as it is really full on.

Now, my basis for thinking my daughter had PDA was that we were looking at 4-5 hrs worth of demand avoidance a day. Hot spots of the day - gettting ready for school, getting ready for bed, doing homework, brushing teeth, putting on sun cream - could easily result in 2 hrs worth of demand avoidance. First nervous energy, then increasingly aggressive - verbal and physical behaviour - to avoid completing the task whilst unable to do any other task or settle down or calm down - just being trapped in a horrid cycle of not being able to do it but also not being able to not do it.

That was 6 months ago. Now we have pretty much zero demand avoidance.

It meant really rethinking everything from scratch. Basically my understanding is this:

Kid with AS interacts with non accommodating environment, picks up huge amounts of stress, the stress causes feedback and increases anxiety, anxiety feeds demand avoidance, demand avoidance goes up and up and up. And then repeat, day after day.

The best way to tackle demand avoidance is therefore to reduce stress and reduce demands.

I will come back and post more about what worked for me, this is a long-ish story, but has a very happy ending (in our case) but have to go for lunch now....

Thank you elasapelsa

I am on the spectrum myself (apparently some traits pretty severe for an asperger female?) and have always considered DC to be fairly normal. During the last years things have changed and I suspect something to be "wrong" especiall that DC identifies as different from other children.

I am not set on a demand avoidance diagnosis as such, I just think that the therapies from PDA might help. And I am very happy that you say that a real PDA would be much worse. I can see that there has been some discussions (here on WP) on PDA and that quite some people are skeptical that it is a real thing. I must say that I see many of the symptoms as stress symptoms (like panic attacks and OCD can be stress related) but maybe I have never met a real case of PDA.

The other day DC had to write an essay (two pages) after half an hour and three sentences I decided that we go Pokemon Go hunting instead. I suddenly had a whole different child - happy, talkative, engaged, an generally just a happy child. I really wish I had more time and more money to do something as I am sure that a general shift in environment, vacation, sports or some excursions would do DC good.
It also makes me frustrated as I am really good at writing, spelling and reading and then DC is totally unable to engage at all. I am aware that I have to give time and space - but exams are looming next year!!

PS
DC picks up enormous amounts of stress when DC visits dad (is confined to his room and forced to make homework/write, no play, no friends unless DC performs etc.)

Sorry, I disappeared. Sorry this is long and potentially irrelevant. I hope there is something in here that might help. Frantically typing between making packed lunch and waking kids up for breakfast!

You will have much more experience than me and better understanding coming from a position of knowledge regarding AS yourself and also your other children. Also, your DC is much older than my demand avoidant child (8yrs) so this may not be as relevant.

With demand avoidance here are some things I did:

- Remove all verbal demands. For the worst patch I got her her own alarm clock so I didn't even need to verbally wake her up in the morning. Put food on the table for her to help herself to what she wanted and when the time came when I wanted us to leave for school I would verbally explain to her sister that it was time to go and just say something like "we'll wait in the car" to my demand avoidant daughter. Initially this didn't bear fruit. Little sis and I would sit in the car for quite a while, reading books, talking and waiting.... It was very frustrating... Sometimes I would have to go in again as my daughter would get "stuck" but I would just calmly help her "un-stick" herself and then return to waiting without making demands or rushing her. That went on for a while and then gradually it got better and better. Some mornings she would just get ready independently, some she would come up with various coping strategies where she would involve me and I would give her some help and direction. Since February we have arrived to school early or on time each morning apart from one or two where things have gone wrong (generally, to do with packing her bag, which she does the night before but sometimes she wants to add something adding on another layer of complexity!)

Some tips. With other kids that are not demand avoidant, you can still use verbal demands and that can help the demand avoidant kid not feel targeted. Also, adapt language - instead of "come and sit down and eat" "dinner is on the table" etc.

With real sticking points, expect things to take a lot of time.

Homework for example. I will try and suggest fitting it in before something not really spending much time referencing the task but referencing what comes after. Once you have done X shall we do Y? Then I will just leave it hanging and if she asks can we do Y, "yes, as soon as you have done X, come and find me and we can do Y!" Also, with homework my daughter actually loves to learn and loves information gathering. She will usually sit down by the computer with the door closed (in self imposed solitary confinement) and just get on with it. She might ask for help but generally it is very much a solo project. For her the tricky bit is not knowing if she is doing it "right" and then getting stuck and being unable to "un-stick" herself and move on. A few more interventionist early sessions where I explained, over and over, the purpose of the homework was enough. The first time she did get very frustrated and did take a lot of time to get started but now she will just sit down and do it. I find written instructions are much better than verbal. And on challenging days when I need her to do something I will just write a list of things often adding something nice or fun at the end.

Half an hour for 3 sentences is actually not that bad! Does your DC like to read? If not, maybe try and get them into books based on any special interests? I find it can be a real struggle to get started but once started my DD is really unstoppable.

Often it is worth reminding oneself (1) that putting in the time will be worth it in the long run and (2) what really is the end goal?

For example, with swimming, we really struggled for years as she has phobia towards wetness and has issues with dressing. Now, she is by far one of the best swimmers in the class. She loves swimming. It was totally worth all the hassle. Because of her issues around dressing, I learnt to just step away, bring a book and wait it out. When I go to the pool now I am amazed to see other parents hollering out their demands and rushing their kids, to the point where they are even still dressing their children in a rushed and irritated fashion. I sit there with my book and my children just do it all themselves. I never say a word. It must be odd to others when my youngest (3 year old) comes out of her cubicle with all her clothes on and her bag fully packed and they are putting socks on kids double her age but if you just invest the initial time in waiting and being patient and teach kids the skills that goes a long way.

Yesterday, for example, we had a really hard time with the school bag. My daughter wanted to add a bunch of stuff and didn't know whether she should or not and couldn't get the stuff to fit the way she wanted. She lost it. I came back in. Gave some options but she was very angry. She went back to her room and put all the stuff away. Then she was back - sad and defeated. She wanted to have one more go. We were just starting to run late. The most direct thing would have been to say "no" you had your chances we are leaving now. But I decided if she could actually manage it it would be such a good experience for her and she was now in a frame of mind where there was a large likelihood she could handle it so I said "ok" one more go as long as you can be fast. She got her stuff, managed to repack it using a new system she had figured out, got in the car, dried her tears, went off on a high feeling like it had been a challenge but she had persevered and got through to the other side. Several times I referenced back to how impressed I had been she had worked through it and I feel that being 5 minutes late was totally worth it (1) because of the confidence of finally getting it right and (2) because these things are cumulative, now she did it once, it will be easier next time.

I find upping independence is the best way to combat demand avoidance. It takes out the middle person. Doing something for someone, doing something because you have to, for someone else's benefit.

It could also be that your DC really needs his/ her diagnosis. It might be that they are really struggling with what it is that makes them different and they need some more guidance in terms of self-knowledge. I know money is tight but any form of one-on-one therapy where they feel they are getting specific attention might go a long way. Is there anything like that on offer? My daughter did art psychotherapy and whilst it was useless in terms of actually getting to the heart of things - as she masks so effectively and is very shy - it was good for the purpose of making her feel "seen". We quit now and she doesn't need it but it was a good patch of just making her feel special and having attention focused on her and her needs. It could be anything really, is your DC into any musical instruments, is there someone who could come around and give them some dedicated one-on-one time?

Anyway, got to run. Hang in there. Sounds like you are doing an amazing job.

One more idea. Has he/she seen an OC. Turns out my daughter has proprioreceptive and vestibular sensory differences and little changes - such as, sitting on a wobble cushion or having restive clay nearby to grab and use - make a huge difference to her being able to concentrate and get stuck into work.

Also, one very useful bit of the assessment we went for was the IQ test. DD was rather exceptionally high (99 percentile) in some areas but her weakest area was processing speed. This makes a lot of sense. Her demand avoidance is often an attempt to slow the world down and just get everything in order before she proceeds.

Finally, have a look at PDA society Uk, they have a useful forum with lots of helpful posters and loads and loads of information and techniques to try.

....and I do think you are doing the right thing by having lots of of unconditional good fun together rather than pushing and pushing.

The best thing is if your child can develop awareness and their own coping strategies and be part of the solution. My daughter is very aware of the times she will likely get stuck. This morning she wants to bring her Hungarian horn tail dragon to school but she knows after yesterday it would be too much for her. Instead she has decided to hold off to tomorrow. Also, there are many times where she is the one to work out strategies. For example, going back to get more winter clothes she said "I know if I go in, I will get stuck...can you bring them out and I will put them on in the street".

I will read tomorrow on the computer.

I remember as a child that I refused to get up/ and dress if my mother was in the room. I do not really know why (?). I also hated orders and I still have a problem with people telling me what to do. I got diagnosed a few years ago and I am still trying to untangle the different diagnosis features