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The latest Planet Autism blog post: "The “It’s Just a Difference” Delusion"
  • Holly59
    Posts: 2,586

    PlanetAutism said:

    https://planetautismblog.wordpress.com/2016/08/09/the-its-just-a-difference-delusion/[/quote

    If you ever want others to understand the reality of Autism show them this article . It should be part of the training for everyone.

    Just brilliant yet so humbling how PlanetAutism herself on the Spectrum exists day and night with no support.

    An amazing lady xxxxxx

  • :x
  • Ruru
    Posts: 28
    Good blog, PA, I never got that nonsense about it not being a disability and the whole ' I wouldn't change a thing about them '
  • Thanks Ruru.
  • I think people who say it's not a disability forget that the brain isn't working in the way it is supposed to. There are some bits that are under-connected and some bits that are over-connected. The autistic brain has it's emotional regulation part affected too.
  • Bernie henryAug 10 CONGRATULATIONS PA what a wonderful piece of writing You have expressed everything I want to say but don't have your skills to do so.Your blog should be part ot the training for all the professionals as Holly said Of course Autism/PDA is a disability a really serious one There is a feeling in society in general that everything can be FIXED I'm sorry to say that autism can't be fixedWe are getting the sanitised version of everything Why can't people handle the truth accept what we are dealing with listen to us and give us the proper support the neurological tsunami that took place in our children's brains in utero can't be undone We learn to live with it It is a disability and I love my son but I hate autism/PDA WELL DONE and keep upthe good work
  • I never was one of the PC brigade and there is too much over-sensitive stuff about offending people that you cannot breathe these days. It won't make me popular with the strident autistics out there who are mentioned in the post, but I think many of those are not parents so don't understand the challenges of parenting autistic children and any that are, are in denial.

    Don't get me wrong, I don't agree with parents naming and photographing their children publicly on social media and stating their private difficulties, such as about their smearing and videos of their meltdowns, as they are entitled to privacy and that is there for posterity. Some parents go too far with that and it's kind of like "what a martyr I am" but parents do need acknowledgment of how very difficult it can be and to describe those difficulties in an anonymous way in places like this forum, to know it's not only them and to let off some steam. We are all human. It is no way just a difference. Many high-functioning autistics (including me) wouldn't want to be a different person than we are, and if you removed the autism we might be, but I know for sure I'd rather be without the difficulties and challenges.

    Thanks berniehenry.
  • BernieHenryaug9Agree it is no way just a difference I think saying that is insulting and disrespectful to us parents and all who haveAutismIt is really making little of the heavy burden we all have to deal with.I don't agree with people putting their children's meltdowns on social media who wants to put their child's difficulties in the public domain like that??Where is this theory that autism is a difference comes from??PA I not too well versed in this theory?Myguessit is mainly emanating from America the land of magical thinking where you can do anything if you work hard enough and where any illness can be fixed.Is this what Autism Speaks believe I don't know much about this organisation but I know that they are controversial Does the guy who wrote neuro diverse Tribes believe it is just a difference ??
  • I think it's largely from strident childless autism advocates! But also there is an insidious movement in official circles also, to say it's not a disability because then they can work on denying resources.
  • Bernie Henry Aug 11 hi all Mydaughter is training to be a nurse she is going in to year three of a four year course To put her self through college she works as a care assistant in various hospitals during the holidays around Dublin Last night she was working as a carer in one of dublins children's hospital.Her work last night was to care for a severely autistic eight your old boy who had no speech There was also another carer with her and also a security gaurd they had to put his mattress on the floor because he kept jumping off the bed she is all scratched all over today but she was full of understanding for this beautiful looking boy and she felt so sad for him his mam had brought him into the AandE and said she couldn't take any more.So he ended up in a room on a ward alongside children who had brain surgery!!How terrible is this situation The only option left to the mother was to do what she did !!In our constitution it says we cherish all the children don't make me laugh!! autism is a difference not a disability don't make me laugh !!
  • Holly59
    Posts: 2,586

    berniehenry said:

    Bernie Henry Aug 11 hi all Mydaughter is training to be a nurse she is going in to year three of a four year course To put her self through college she works as a care assistant in various hospitals during the holidays around Dublin Last night she was working as a carer in one of dublins children's hospital.Her work last night was to care for a severely autistic eight your old boy who had no speech There was also another carer with her and also a security gaurd they had to put his mattress on the floor because he kept jumping off the bed she is all scratched all over today but she was full of understanding for this beautiful looking boy and she felt so sad for him his mam had brought him into the AandE and said she couldn't take any more.So he ended up in a room on a ward alongside children who had brain surgery!!How terrible is this situation The only option left to the mother was to do what she did !!In our constitution it says we cherish all the children don't make me laugh!! autism is a difference not a disability don't make me laugh !!



    Berniehenry I was a nurse 40 years ago doing my training and I can still see these tragic cases of children being abandoned on hospital wards because they fitted in nowhere else.

    The poor mother had the courage to make a decision which must have broke her heart. It was an amazing coincidence that your daughter was on duty who had years of first hand knowledge so she could do her utmost to help this child and show others how to care.

    I do hope that this child, and the mum gets the care they need. You have an Inspirational daughter, a true nurse.
  • I'm so disappointed to have read this on the forum today. I don't think this is an appropriate place for people to be promoting blog posts not even related to PDA. I am deeply offended by much that has been said here but particularly the suggestion that anyone who doesn't share the writer's particular view is 'in denial'.

    This is not the appropriate place for this type of contentious and upsetting discussion. Autism is a lot of different things to a lot of different people and this forum needs to be a place where everyone can feel welcome and included. I sincerely hope that posts are better moderated in future to ensure that this space is not hijacked by those of any particular position but remains a safe and inclusive space for all autistic people.
  • StephShrub I am not promoting/hijacking anything, I am an autistic parent, with suspected PDA and two autistic children, one of whom has PDA. How is it not related to PDA when PDA is an ASD? As anyone on this forum will tell you I am a heavy contributor to this forum, I research things on behalf of people and offer advice and experience. I am not some random spammer and I would hope others on here see me as a valued member and contributor. There has been no intention to offend anyone and I am unclear why you see it upsetting. I neither have any intention of making anyone feel unwelcome on here and I cannot fathom why you would say that.

    Largely, this forum is used by parents and most of those parents are neurotypical, a small minority are neurodiverse. I am always open to the opinion of others and they are all entitled to post them on here. There has been plenty of debate on threads here and to my knowledge, nobody has either been offended or caused offence to date.

    And BTW there are sub-forums for different content and it's posted under general discussion, so I think you are out of line saying it's irrelevant anyway.
  • I never suggested you were 'a random spammer' or questioned your status as a valued member and contributor. I was simply sad that you were unable to state your own position without running down others who hold a different view.

    You were well aware that what you had to say might cause offence to some sections of the community but discounted their opinion by suggesting they are 'in denial' or dismissing them as 'strident childless autism advocates'.

    The neuro-typical parents who come to the forum need to be aware that, as I said, autism means a lot of different things to different people and that no one autistic person, however well-intentioned, speaks for all of us.

    Unfortunately, the title of the discussion, suggesting that people who hold the 'difference' stance are deluded, appeared clearly on the front page of the PDA Society website. I felt it could be misconstrued as the charity's position rather than the opinion of one member.

    I myself assiduously avoid most autism forum and discussion pages where controversial issues are discussed as I find the highly charged atmosphere intimidating and much of the content very distressing. As the PDA Society is the only place for support, information and guidance for PDA it seemed a great shame to find it here, too.










  • You used the words "hijacked" and "promoting" so if that doesn't scream spammer I don't know what does. It didn't come across as sad, it came across as attacking, accusing and critical. So out of the blue as well. I don't know why you say it was on the front page of the PDA Society website when it is on the forum and a sub-forum at that. People have discussions and opinions on forums and that is what they are for. Clearly something in my blog post touched a nerve with you and that's why you are upset. But it's highly inflammatory to come on here as a seemingly brand new member slating an existing member. And I might add hypocritical when you consider the quote of yours in the final paragraph below.

    I don't know why you say I am running anyone down. It is a fact that someone is in denial if they deny something that is a truth. I knew a certain faction might not like it, in that they wouldn't agree with it. Because that's how it is when someone has an opposite opinion to another person. But we are each entitled to our opinion.

    You are actually insulting the NT parents, in implying that they are lacking the wherewithal to realise that one autistic person does not speak for all autistics. And I might add I have nowhere claimed to speak for all autistics, in fact I did the opposite!

    I suggest you are being hyperfocused on the title of the blog post needlessly. Blog posts are someone's personal thoughts, everyone knows that. Nobody is going to take that as a diagnosis!

    I am actually flabbergasted that you believe this forum is a "highly charged atmosphere intimidating and much of the content very distressing" as all of us get along fine here and to my knowledge nobody has a problem. I am sure other members will add their thoughts to that if they feel inclined.
  • I trust we can leave it there now StephShrub, as otherwise you will be creating the very atmosphere you have claimed above, which was not here before you posted.
  • Holly59
    Posts: 2,586

    PlanetAutism said:

    I trust we can leave it there now StephShrub, as otherwise you will be creating the very atmosphere you have claimed above, which was not here before you posted.



    Totally agree PlanetAutism. I personally found no offence in your article , it was a very well written moving piece.
    Everyone gets on well on this site. It feels like a real family.

    We don't need or want any bad atmosphere. We have enough issues in our families to cope with without aggression on here.
  • Yes, after the time I've been having this summer holidays, this is the last thing I need right now - and thanks Holly59, as ever, a stoic and supportive member. :-)
  • Berniehenry aug12 Finding this site has been a life saver for me and as I've said before Pa I have gotten so much information from your blogs and posts and I hope you continue to be a source of such valuable information to us all We all have different opinions and Ithink we discuss them in an environment where we are not judged. In my view this is a really democratic siteI have never felt intimidated only supported and I ve never come across anything distressing on here either unless you find the reality of posters stories distressing.Nobody is ramming their opinion down a anyone's throat here we tell each other our experiences and we get advice and find comfort in the company of others who are walking in the same shoes Your blog really struck a chord with me and many othereople To me you are the beating heart of this forum and have helped so many on here at crisis moments in their lives with really valuable advice We don't as Holly said want a bad atmosphere on this site I want to be able to talk freely and interact with people in a friendly way even if we do sometimes disagree which is the way it has been up to now PA stay strong and keep up your great work
  • Holly59
    Posts: 2,586

    PlanetAutism said:

    Yes, after the time I've been having this summer holidays, this is the last thing I need right now - and thanks Holly59, as ever, a stoic and supportive member. :-)



    No problem. Busy doing some research for a member . Meeting up with an amazing mum and daughter on Sunday , helping her collate information to assist in a private diagnosis for her daughter.
    Our local CHUMS have failed this family BIG TIME. I have worked out six issues talking to mum tonight, 3 co morbid , 3 Autism Spectrum. Clinicians guide, leaflets, books, my paperwork, how I worked everything out, family trees, websites , will have all ready for Sunday.
  • @berniehenry thanks for saying so well what we all think about this site and also for your kind words. I love the way you express things so well (and with so much heart!), every time you hit the nail on the head.

    @Holly59 you are astounding, that mum is so lucky to have you fighting her corner, you really need to go into practice as you are doing a better job at diagnosing than some of these clinicians! Let us know how she gets on.
  • Holly59
    Posts: 2,586

    PlanetAutism said:

    @berniehenry thanks for saying so well what we all think about this site and also for your kind words. I love the way you express things so well (and with so much heart!), every time you hit the nail on the head.

    @Holly59 you are astounding, that mum is so lucky to have you fighting her corner, you really need to go into practice as you are doing a better job at diagnosing than some of these clinicians! Let us know how she gets on.



    Will do. I find just listening to the story is enough. All the information is there. It's the tick box self assesment that messes up the diagnosis. Must have been a Psychologist who made that up because it's utter gobbledygook in places. Berniehenry is so sweet. Her posts are a combination of tears, courage and at times really funny. Would love to see her confront the Irish PM. Wouldn't have a leg to stand on that's for sure.Can just imagine her hitting him with her handbag and calling him a few choice words.


  • I know, these clinicians would be dangerous if they had a brain! My CAMHS were totally tick-box and didn't diagnose my eldest because she just missed the cut-off, well duh - ADOS-2 is only 77% clinically reliable in high-functioning individuals and likely less still in females!

    Berniehenry is the greatest. Lyrical, Irish common sense at it's finest. :-*
  • Hi PA,

    I just wanted to say your blog was fantastic and so heart felt. I can relate to everything you say about your children's difficulties. Thanks for all the research and support you offer us in this forum, thanks for posting
  • mrscoco
    Posts: 190
    Just wanted to add my bit and second everyone else's thoughts planet you are the life and soul of this site and here to support everyone. This site truly is a family and has been the only place I can turn that others 'get' what we are going through. There is no need for negativity on here as like others have said we all have enough stress and struggles to deal with so if stephshrub doesn't like what is on here then it's best for them to avoid. Of course we will welcome anyone who wants genuine help but please do not upset existing members who have experienced helped and put do much time into these forums...enough said
  • Thank you both ladies for your kind support, it's truly appreciated. (*)
  • webbwebb
    Posts: 2,543
    Forum Members are kindly reminded to :-

    Be respectful of one anothers points of view. There are many areas for discussion surrounding PDA, where we all may have different views based on our childrens circumstances, how their PDA affects them day to day and how our own knowledge and life experiences affect us as individuals.
    Please also remember to welcome new members to the forum.
    To prevent further debate on this topic we are closing this thread.
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