Aspergers and Lorna Wing subtypes

Page 1 of 1 [ 15 posts ] 

circle
Butterfly
Butterfly

Joined: 4 Jan 2017
Gender: Female
Posts: 9
Location: Ireland

04 Jan 2017, 4:54 pm

Hi. I'm new on here and Irish so please let me know if any autism associated language I use is different/unacceptable to you. I've two kids with Aspergers and the supports for them are based on what we can pay for, together with a very patchy public system-It's fairly random, not a multi-disciplinary team and there isn't adequate observation involved. My son has been able to accept and act on all supports available but my older daughter, 9, has not. She performs really well in therapeutic situations, could probably write a book on the theory herself at this point but hasn't had a huge response to social interventions. Unfortunately, in the past, I haven't been listened to when I say "It's all working for my son who's 3 years younger but not for her" the response seems to be to go do it all again. Last year I met with a professional from an ASD charity who suggested that my daughter's response is very much in line with her likely subtype of a crossover between Aloof/Indifferent and Passive/Controllable. Does anyone have links or information on a practical curriculum I could follow suited to her type or is this view even current anymore? I don't have a fixed idea on how she should be but, the method in which I'm trying to support her is patently unsuitable ie modelling, rewarding desired behaviours, creating social opportunities. All views are welcome.



voidofcontext
Snowy Owl
Snowy Owl

Joined: 24 Dec 2016
Age: 34
Gender: Male
Posts: 126

04 Jan 2017, 5:13 pm

Hi and welcome to the site!

I'm not an expert by any means but I do understand that Aspergers and Autism Spectrum Disorders present differently in girls compared to boys. Much of the treatment is based on the old (and outdated) notion that Autism was a male specific condition so there may be a bit of difficulty in finding an approach that would be of greater benefit to your daughter as many interventions have been designed with this in mind.

I'm sorry I can't be of more help but the gender difference might be something to explore with those providing support to you and your family during this time.


_________________
A list of scores and doses.


circle
Butterfly
Butterfly

Joined: 4 Jan 2017
Gender: Female
Posts: 9
Location: Ireland

04 Jan 2017, 7:00 pm

Thanks for your welcome and response-Unfortunately, I'm painfully aware of how misunderstood her presentation is and, while it has at times pushed me to the limits in trying to advocate for her, I see a very strong lady emerging in my daughter who focuses on the positive and shrugs off the discrimination she encounters from her teachers and her supposed care team. In the school setting she is experiencing an incredibly begrudging approach to her support-I suspect this is because she's very intelligent and behaves well. The school environment is, however, really well managed and she has a great bunch of kids surrounding her. This is school no. 2 so we already know what a miserable child looks like. We live outside the school area so socialising is complicated and, while her classmates don't quite manage inclusion, I'm very grateful to the good-hearted kids around her. Prior to having kids I'd wondered whether I was autistic myself but in true procrastinating form left it at that. I've never been in any way attracted to work in vocational/caring professions and I find that aspect of being pseudotherapist to my kids quite challenging. For me, curricular type approaches work well as a core structure and I can hire a teacher to help implement an approach. We have found decent private therapists but it's very disjointed trying to put a full picture together. My daughter is an amazing girl, I really enjoy her as a person, and is happy but I can see so many unsupported areas and wonder how that's going to work for her as she gets older.



Amity
Veteran
Veteran

User avatar

Joined: 22 Mar 2014
Gender: Female
Posts: 6,901
Location: Meandering

04 Jan 2017, 7:58 pm

Hi there Circle, I'm Irish too, welcome to WP :)
Maybe check out Joanne Douglas in the Spectrum Centre Dungannon Link to biography
She worked alongside Lorna Wing as detailed in the link and should be able to provide the information you need for your daughter, Dungannon could be a long distance away, but Jo has an active interest in and a deep understanding of girls and women on the spectrum.
Good luck



circle
Butterfly
Butterfly

Joined: 4 Jan 2017
Gender: Female
Posts: 9
Location: Ireland

05 Jan 2017, 8:10 am

Aw, Amity, I go on a forum based miles away and get an answer from close to home-how funny is that?! ! Dungannon is a long way for us but the bio for Joanne Douglas looks amazing. I might see if she has any links with middletown autism cross border. My daughter will be due to get new reports next year for heading to post-primary so Joanne might be our best bet if she can slot into a format the southern education system is used to. Have you or yours attended with her? Would you have any view on how it might work in our situation? My head is wrecked between differing opinions for my daughter. On the one hand, her Play Therapist (private) is very suspicious of direct social skills teaching and feels it could be damaging to her. This therapist does very solid child-led work with her and is the only professional we've met who sees a similar picture to what we do at home-I deeply value her opinion, however.......the Educational Psychologist on the public care team sees that she needs a lot of information about topics before she can extract a general rule. Personally, I think the truth is somewhere in the middle. I've seen that behavioural approaches and structure give her a framework to slot abstract ideas into but I don't think it effects a deep change, it's more of a coping strategy that gives her enough to get by on. In the next few years she might have the opportunity to participate on a friendship programme which would be well-implemented but very much geared towards naming and rewarding the desired behaviours. She opts out and avoids a lot of social interactions. She's never had a friendship and, until recently, didn't have a strong sense of self-identity. At school she hides behind a "good girl" facade even though she has a very subversive sense of humour and is quite spirited and mischievous at home. There are definitely challenges around anxiety and predictability as she has a good relationship with her younger aspie brother and they have a very rich level of communication. We've never been able to generalise this outside of home. Her interests are more stereotypically male and she relates better to boys than girls. In the last 6 months I've seen her actively enjoy interacting with a few boys through a shared interest in minecraft and science. Probably too much info but i'll throw it out there in case anything rings a bell. With new diagnosis we've been able to give her more targeted physical support and this has also had a very positive effect on her social availability as her energy levels are better. Thanks.



Amity
Veteran
Veteran

User avatar

Joined: 22 Mar 2014
Gender: Female
Posts: 6,901
Location: Meandering

05 Jan 2017, 8:10 pm

Im not a frequent visitor to the Parents forum, but the title grabbed my attention and... who knew, another Irish person :).

As far as I am aware Jo travels to the south to meet with clients from time to time, and regularly sees clients from the south in her clinic, but as I attended for myself I dont have child/education specific information, but will try to answer.

There is of course a waiting list, but I found both Jo and Andrea to be worth the wait, it would be good to make contact with them, even if they cant assist you, they will know who can.

Basic social skills are key to a long term independent living goal, I think especially so in a country where the wider public dont yet seem to be aware/understanding/supportive of less visible conditions. There are different approaches to developing any skill, undoubtedly repetition and a practical application/experiential learning will be a part of this process, perhaps she could practice particular skills with her younger brother, helping him to develop his and mastering her abilities at his level, interacting with other children in the friendship programme could be a strong learning opportunity.

The behavioural approaches are a coping strategy, a disguise in ways, and alone imo they are not suited to long term use. I think teaching her about balance should be a part of the social skills development, yes it is important to keep trying to achieve something that is not innate, but for her well being/sense of identity there needs to be a respectfully equal space for her to just be as she is. A type of individually tailored self care.

Thats all I can think of for now, Good night :)



circle
Butterfly
Butterfly

Joined: 4 Jan 2017
Gender: Female
Posts: 9
Location: Ireland

06 Jan 2017, 4:59 pm

Thanks for your insights. I've come a long way in understanding my daughter and seeing that there can be a lot going on behind what looks like a simple challenge. How the two kids view autism is very connected to their experience of it-My son, who is very mild, out of the blue announces fab things like "I'm happy with me being me" and "Autism is ok for me". With my daughter, it's such a part of every experience she says "I'm just me, how would I know what autism is like?". For a number of years we felt that we were fighting to keep her in our world and trying to persuade her that it's a good place. We'd always say the biggest breakthrough came when she began to trust us. It's so true when you talk about balance-I'd have a much more peaceful mind if I knew whether we were asking her to do things that she isn't ready for, fundamentally insults her or needs support with to overcome her fears. I'm firmly of the opinion that the NT world isn't "right" but it is in the majority and life will be richer having access to that world if she chooses to and not having to deal with the fallout from being the focus of negativity from it. If we can get her through schooling with her sanity and love of knowledge intact I think she'll find a way to a life that's satisfying for her...she's opened up my mind to what it means to have dignity in your existence as a person rather than the external things of job, partner, social status. I find it mind-boggling how adults can dismiss her daily climb to continually cope with challenges that are present in every moment of her day. Re Irish society-I always thought we were basically ok people but I hate this society now. Some of the best conversations I've had about autism have been with a friend in the UK who talks about her experience of feeling "other" due to her mixed-race marriage. I've found Irish people great as individuals but when we become part of a system it unleashes incredible callousness and lack of personal responsibility. My only consolation is that I was as bad before I had the kids!! I honestly have more interesting, fun conversations with this girl than I do with most adults....she's a sharp, funny girl, to-day she was having a loiter when we were out and, when I told her the mombus was leaving, she walked past me and said "That's a buspass!" Thanks for your encouragement-I'll find a way to engage with Joanne.



Amity
Veteran
Veteran

User avatar

Joined: 22 Mar 2014
Gender: Female
Posts: 6,901
Location: Meandering

07 Jan 2017, 9:42 am

You are welcome :)

If I might make a suggestion, walls of text can be difficult for some folk here to process, breaking your posts into paragraphs will help I think to increase your replies.



circle
Butterfly
Butterfly

Joined: 4 Jan 2017
Gender: Female
Posts: 9
Location: Ireland

07 Jan 2017, 3:48 pm

Thanks a mill-Looking at yours I can see the difference straightaway. It's always good when a simple change can be useful.



somanyspoons
Veteran
Veteran

Joined: 3 Jun 2016
Age: 43
Gender: Male
Posts: 995

07 Jan 2017, 4:52 pm

Amity wrote:
You are welcome :)

If I might make a suggestion, walls of text can be difficult for some folk here to process, breaking your posts into paragraphs will help I think to increase your replies.


I started to reply but erased it because I didn't think it contributed much. The "typing" thing just doesn't do much for me. It used to, but then I realized that I was trying to use personality typing to make myself safe around people, and that this simply doesn't work. People aren't box-able.

If you want more replies, describe the problem. (Or the opportunity you want to take advantage of.) And ask for how people see it, without specifing a request for advice to conform to Lorna's work. Her work just isn't all that popular around here. I'm really educated on the subject of autism, and her name barely rings a bell. I think maybe I've seen a couple youtubes of hers. She just didn't inspire me with her theories much. Not that there's anything wrong with those theories.

But the above poster is correct. Paragraphs are much easier to read.



circle
Butterfly
Butterfly

Joined: 4 Jan 2017
Gender: Female
Posts: 9
Location: Ireland

07 Jan 2017, 5:45 pm

My daughter, age 9 with Aspergers and in the gifted range, is frequently worn out just by being in her environment. Her language is advanced but she finds social communication difficult. Being around people and communicating with them is difficult for her. All of this is very understandable given that she has autism, sensory processing challenges, dyspraxia and joint hypermobility syndrome.


The challenge for us is that we have two kids, for one of whom, all techniques their care team tell us to use have some value and success. ie Hanen Talkability, Positive Modelling,Social stories, Behavioural approaches, generalising skills from familiar people at home to a broader setting. For my daughter that service just tells us to go back and do it all again when I say we see small benefits but it's not changing her overall desire to communicate and relate to others.

We've tried to cover some bases privately but it's separate individuals with different approaches and it couldn't be considered a multi-disciplinary team. The constraining factors for us in pursuing therapies are money and using time and energy from my daughter's childhood pursuing options that we're not even sure are fully covering her challenges. Her play therapist sees that anxiety and predictability are big features for my daughter, her care team sees no anxiety. I see anxiety and we focus our efforts on keeping her physically fit and well and with enough energy to be able to cope.

The Professional (I don't know the exact title) I spoke to who talked about the Lorna Wing subtypes said my daughter's profile made more sense if looked at from that point of view and that positive modelling, while desirable, shouldn't be expected to produce significant results. We had already figured that playdates, no matter how time restricted, structured or geared to her interests, were of limited value and often left her tired out and unable to cope for the rest of the day.

What she said is new for me in relation to how we should be supporting my daughter and organising her ongoing educational placement. Personally, I don't think people in general can be divided into accurate neat categories, with autism there are even more complexities and I can see my daughter's interaction with life on any day is very much dependent on the dynamics between what the overall load in her day is, how she's doing physically, what's been in her past, what events are upcoming. However, generalisations can be useful in indicating approaches that may be more effective.

We lead a restricted life around my daughter's needs. I'm never sure whether we've got achievable challenges in the mix for her, if we're reinforcing her fears or if we've climbed into a coccoon with her and we've become the problem. Right now she's happy. Because we've had additional information about her physical challenges and are able to support her better, she has more energy and I think there's an opportunity to push things a little further for her and, because the subtypes have been raised, I'd like to talk to someone with experience in using differentiated strategies based on these to see how they got on and what those strategies were and if they can direct me to any resources around that.

If you've found other approaches useful in overcoming what I think is fear/aversion around communicating, I'd love to hear about them. Thanks.



Amity
Veteran
Veteran

User avatar

Joined: 22 Mar 2014
Gender: Female
Posts: 6,901
Location: Meandering

07 Jan 2017, 7:44 pm

circle wrote:
Thanks a mill-Looking at yours I can see the difference straightaway. It's always good when a simple change can be useful.


No worries :)
I done a quick search for Lorna Wing and there are plenty of threads that make reference to her in these results:

http://wrongplanet.net/search-results/? ... &sa=Submit

Doing searches on old threads is how I gathered information when I first joined WP, (after all this is a site full of people experiencing social & communication differences/challenges) there has been a wealth of information shared over the years. Also the general autism discussion forum is the busiest and imo the best place to post a general autism information thread.

Somanyspoons, you must not be familiar with the UK approach where the name Lorna Wing is instantly associated with Aspergers :).



somanyspoons
Veteran
Veteran

Joined: 3 Jun 2016
Age: 43
Gender: Male
Posts: 995

07 Jan 2017, 8:30 pm

Amity wrote:
circle wrote:
Thanks a mill-Looking at yours I can see the difference straightaway. It's always good when a simple change can be useful.


No worries :)
I done a quick search for Lorna Wing and there are plenty of threads that make reference to her in these results:

http://wrongplanet.net/search-results/? ... &sa=Submit

Doing searches on old threads is how I gathered information when I first joined WP, (after all this is a site full of people experiencing social & communication differences/challenges) there has been a wealth of information shared over the years. Also the general autism discussion forum is the busiest and imo the best place to post a general autism information thread.

Somanyspoons, you must not be familiar with the UK approach where the name Lorna Wing is instantly associated with Aspergers :).


I'm from the US.



somanyspoons
Veteran
Veteran

Joined: 3 Jun 2016
Age: 43
Gender: Male
Posts: 995

07 Jan 2017, 8:52 pm

circle wrote:
My daughter, age 9 with Aspergers and in the gifted range, is frequently worn out just by being in her environment. Her language is advanced but she finds social communication difficult. Being around people and communicating with them is difficult for her. All of this is very understandable given that she has autism, sensory processing challenges, dyspraxia and joint hypermobility syndrome.


The challenge for us is that we have two kids, for one of whom, all techniques their care team tell us to use have some value and success. ie Hanen Talkability, Positive Modelling,Social stories, Behavioural approaches, generalising skills from familiar people at home to a broader setting. For my daughter that service just tells us to go back and do it all again when I say we see small benefits but it's not changing her overall desire to communicate and relate to others.

We've tried to cover some bases privately but it's separate individuals with different approaches and it couldn't be considered a multi-disciplinary team. The constraining factors for us in pursuing therapies are money and using time and energy from my daughter's childhood pursuing options that we're not even sure are fully covering her challenges. Her play therapist sees that anxiety and predictability are big features for my daughter, her care team sees no anxiety. I see anxiety and we focus our efforts on keeping her physically fit and well and with enough energy to be able to cope.

The Professional (I don't know the exact title) I spoke to who talked about the Lorna Wing subtypes said my daughter's profile made more sense if looked at from that point of view and that positive modelling, while desirable, shouldn't be expected to produce significant results. We had already figured that playdates, no matter how time restricted, structured or geared to her interests, were of limited value and often left her tired out and unable to cope for the rest of the day.

What she said is new for me in relation to how we should be supporting my daughter and organising her ongoing educational placement. Personally, I don't think people in general can be divided into accurate neat categories, with autism there are even more complexities and I can see my daughter's interaction with life on any day is very much dependent on the dynamics between what the overall load in her day is, how she's doing physically, what's been in her past, what events are upcoming. However, generalisations can be useful in indicating approaches that may be more effective.

We lead a restricted life around my daughter's needs. I'm never sure whether we've got achievable challenges in the mix for her, if we're reinforcing her fears or if we've climbed into a coccoon with her and we've become the problem. Right now she's happy. Because we've had additional information about her physical challenges and are able to support her better, she has more energy and I think there's an opportunity to push things a little further for her and, because the subtypes have been raised, I'd like to talk to someone with experience in using differentiated strategies based on these to see how they got on and what those strategies were and if they can direct me to any resources around that.

If you've found other approaches useful in overcoming what I think is fear/aversion around communicating, I'd love to hear about them. Thanks.


Does your daughter have Elhers Danlos syndrom?

So, to summarize what I think I'm getting here. Your daughter is doing great. She's happy and developing nicely. But it's been a long hard road and your family really restricted your lifestyle to do so. Now, she's getting older and you wonder if you can open things up, both for her and for you.

The answer is a little bit of both. As she grows into adulthood, she's going to continue to need a lot of alone time and a lot of down time. She needs her time away, and finding ways that she can start to be more independent so that she can get that alone time is going to be huge for her mental well being.

On the other hand, she will also benefit from being pushed out of her shell a little. That's going to make sure that her world remains open and she has as many opportunities as she needs to find her place in the world.

So, that's the message you want to give her. That you see and respect her need for "down time" (US phrase for being alone and quiet) and that you also want to push her a little.

She's getting old enough to start participating in that goal. To talk about ways in which she is ready to stretch and ways that are too painful. She's also ready to very gently be introduced to the idea that other people have needs. And her parents are people. So, letting her know that your needs count is a really important lesson for kids on the spectrum. Remember, they are learning how to be in relationships from you. Yes, we learn slower. Glacially at times. But we do learn.

In some ways, this idea of differentiated strategies is not really achievable. All kids are different, but all kids are also the same.

There's a method called Collaborative Problem Solving that you may like. It was developed for kids with anger management issues, but don't let that turn you off. If I understand correctly, your daughter isn't angry at all, but she does shut down. The result is the same. She's not available for negotiation or for logic when she's feeling backed into a corner. So the methods might word for you. Just replace "outburst" with "shutdown."

It's so easy for us to just glance over kids who shut down instead of explode. But its a very similar thing from the kid's point of view. A pressure is put on them. They feel out of control. They loose internal control, and they end up in a pattern that they hate, but feel powerless over. It's a lousy trap. Teaching your daughter how to regulate her emotional world without avoiding all the time is a great life skill. And it should help you feel like you are less restricted, too.



circle
Butterfly
Butterfly

Joined: 4 Jan 2017
Gender: Female
Posts: 9
Location: Ireland

08 Jan 2017, 4:11 pm

Thanks Amity-I'll do a search

Hi Somanyspoons-
Yes, my daughter has Ehler Danlos Type3, at this point it's effects are mild in comparison to what others suffer but it is an additional burden for her. Even if something does escalate with puberty , at least we'll have an understanding of why it's happening.

Absolutely, you're getting her picture.

When it comes to defined skills she's great at working to a target for a defined reward eg turntaking, sharing. However, it's hard for her to talk about more abstract things which makes participation in developing communication and friendship goals difficult for her-She seems to need to hear about or see other people having experiences before she can have an opinion on her own feelings. It could be a year later when she'll figure out how she felt about something. One of her care team referred to Temple Grandin's experiences and suggested that my daughter has to gather a lot of information about objects and ideas before she'd have a general idea. Give her Science or Maths and she has it nailed in an instant!

I'm quite similar to my daughter in that respect-I'll have to look at loads of websites, procrastinate, lose track of what I'm at and then I'll have a very simple clear plan in my mind and I'll have no idea why I had to go all around the houses to get to it!! !

We've gotten better at knowing when something is bothering her and she is gaining more understanding around events and the feelings in her body linked to emotions. If she's worried about something, she can cope if she's in a good place, but frequently she'll act out her frustration by for example choosing an activity that's difficult and she'll have a good vent about it's design flaws and basic stupidity for existing but won't name the real problem. I suspect that, sometimes she does know what the big problem is but, when it's something that hasn't happened (Apprehension) it just isn't concrete enough for her to express.

Regarding her understanding of others she's doing well. We've used Social thinking-Michelle Garcia and Zones of regulation with her. We're honest about explaining ourselves to her, she registers how my bad mood drags her down. She's beginning to understand that how she communicates with us is related to her mood and it produces different responses.

Collaborative Problem Solving looks very promising. From a quick look at the website it looks like the kind of approach I can work with. I really need a step by step process to follow. In the past, my daughter had a lot of outbursts and anger spilling over but only at home. She'd tend to withdraw and zone out in school. In school those challenges around withdrawal are either not noticed or dismissed as "Just her way". We made positive changes for her in our approach and environment and set boundaries around acceptable behaviour from her.

It's very encouraging that we're already exploring and have some understanding of a lot of the areas you've touched on. Thanks for taking the time to respond. Circle