Desperately needing some advocacy

Hello

I'm wondering if anyone could recommend anything that might be able to help me.

I am diagnosed with ASD, I am also diagnosed with ADHD, Sensory Processing Disorder and I have Dyspraxia.  I have a high IQ and at 43 I am recently diagnosed.  I am also agoraphobic due to sensory stuff though I do go out so long as I am with someone.

I also have 6 children who all have disabilities.  I guess in lots of ways I am very high functioning since I've raised all these children with special needs.  They have diagnosis like ASD, ASD Non Verbal, Cerebral Palsy, Severe Sight Impairment, Learning Disability.  4 of them go to special schools.

My biggest problem in life is dealing with my local council.  I am in South West London but I won't say which Borough.

I have the kind of Autism which is highly verbal, very descriptive and I am sort of person who talks so much that people look at their watches.  I also write very detailed emails.  I seem to be neurological incapable of a) shutting up and b) sending a short concise email.  I am not totally silly so after I've gone on I do realise.  I also vow before meetings to not speak so much but then do it anyway.  I am also very blunt and very direct.  This becomes much worse after a period of being ignored or let down.  This happens an awful lot when you've got chidlren with special needs.  My council have treated me very poorly over the years and I've been awarded compensation for some of it.

I'm afraid it continues.  Since my ASD diagnosis there is no understanding whatsoever and they continue to treat me quite poorly.  I guess because I don't have a learning disability they just don't get it and can't muster any understanding or compassion for me at all.

in 2016 they treated me so badly that I just broke down.  I won't go into mega details but I just felt that life wasn't worth living anymore.  After that I finally got some respite.

Unfortunately I was also "in care" in this Borough and I had some stuff happen to me whilst I was supposed to be being cared for by them which is currently with lawyers as well.  Again I won't go into detail.

Oh and all of my children are disabled because when I was in the children's home they consented to an operation being performed on me which it turns out probably wasn't necessary but which has caused all of my children to be born extremely prematurely and caused them disabilities.

At the moment I have numerous issues both with community care for my children and support for their needs at school.  I have 5 EHCPs and 6 cases with SEN lawyers.  So I've def got the capacity.  

The council complain about my emails.  They are never threatening and I don't swear.  I do challenge and I am blunt and I do waffle.  I don't feel that I am capable of changing that.  I have tried over and over again to explain this is a symptom.  I have also sent them confirmation from a Consultant to that effect.

I'm not good at all the 'social fluffing'.  I have no filter and I don't lie and I am far too honest.  This offends people.  I don't say personal stuff.  So I wouldn't say someone was fat or ugly or something mean like that.  However for example in a meeting today I said that "I don't ever dislike or hate people, I either like them or they are completely meaningless to me and I'd probably never think about them again".  One person took this to mean that I was saying he was meaningless.  I wasn't.  I was speaking generally and my point was that I don't have bad feelings really to people.  I just like people a lot or I have nothing to do with them and wouldn't give them much more thought.  

I had a case manager come to my home today.  He is working on my children's cases and he told me after only meeting me 3 minutes before in my own home that top of his agenda was dealing with my emails and that I must write to them in bullet points.  I felt very humiliated.  It would be like telling someone who wets themself due to a disability or health condition, that they must try to not wet the sofa.  If I could be concise I would.  I am not meaning to annoy anyone.  I am certainly not meaning to be difficult.  As I see it I just operate on a slightly different frequency.  I also think very quickly and their inability to grasp things that I am saying easily I find very frustrating.  I then sometimes don't seem able to explain it in a way that they can easily grasp.  I sometimes wonder how they have these jobs given that some of them are clearly not that capable.  I also think that some of them are not that bright.  I don't mean that in a horrible way.  I have children with learning disabilities and I do everything to support them.  

I flopped at school.  It bored the life out of me mainly.  A lady that assessed me said that these days a child like I was would probably have been put in a gifted program.  Dealing with these people makes me feel a bit like I felt at school, frustrated with the speed of thinking and inability to grasp things.  I know that sounds really arrogant on the face of it.  I swear I am not trying to be arrogant just sharing the way that I feel.  This is one place that you can do that.

I have asked them to reassess my needs as an adult, they ignore me.  I have also asked them to provide me with an advocate they ignore that as well.  I don't feel that I am able to be more 'neurotypical' to please them and there is a bit of me that is really angry that they are suggesting that I must be.  When I got diagnosed I felt so much relief.  I've held on to this idea all my life that I am bad and not nice and I decided that I was going to let go of that.  They just reinforce those feelings in me.  Obviously anything really awful like swearing or threatening would be unacceptable but I am not doing that.  I am challenging breaches of statutory duty.  Genuine cases of it that a solicitor has taken on.  So I am not just mad or being difficult because I fancy it.

I'm also probably not being totally lacking with emotion because these are my kids.  I love them.  I feel passionate about these failings.

I feel like I am not able to use their services given that they symptoms of my disability seem to be so objectionable.  I am getting very upset about it and I feel very misunderstood and frustrated.  I don't really know what to do.  For the time being I've said for my own mental health I can't deal with them and I've asked them to just leave me alone.

I really need an advocate I guess to filter my autism into a more neurotypical format to present my views/issues to them.  The thing is this is going to be a big job for someone as I have 6 SEN children, a social care package and other stuff so I'm constantly needing to contact them.

Can anyone suggest anything please because I am dealing with people with absolutely zero understanding and absolutely zero compassion and I am becoming more and more distressed with each adverse incident.

Thanks in advance

  • Hi Xanadu

    Still absolutely amazed by how you keep it all together.  It is such a challenge with ASD that people perceive you as capable, articulate, intelligent...we may be "high functioning" in some areas but it is perfectly balanced with the elements of life that we can desperately need support with at times. 

    I don't feel that I am able to be more 'neurotypical' to please them and there is a bit of me that is really angry that they are suggesting that I must be

    Your quote above, really struck a chord! I really feel for you and can strongly identify with the above on a daily basis.

    Do you have a good friend who can support you, it definitely sounds like it would be worth phoning the autism phone line and I have also included a link to autism services in London

    http://www.autism.org.uk/services/local/england/london.aspx

    you need someone who understands autism and how it impacts ... you certainly need someone! :(

    On a positive note, it is good to here from you and I wish you all the best!

    x

  • Dear Xanadu,

    Further to Cassandro's advice, you might like to contact our Autism Helpline team who may be able to provide you with relevant information and advice . You can contact the team via telephone on 0808 800 4104 (Monday to Thursday 10am to 4pm, Friday 9am to 3pm). Please note that the Helpline is experiencing a high volume of calls and it may take a couple of attempts before you get through to speak to an advisor. Alternatively, should you prefer to send a message, you can do so via their webform:

    https://www.autism.org.uk/services/helplines/main/questions.aspx

    I hope that help.

    Regards,

    Kerri-Mod

  • Just some random thoughts, themselves rather 'unfiltered', so apologies for any offence. Six children, especially with special needs, is a lot, when I see people on this forum struggling with just one child. I hope they can all reach their potential. Maybe the fact that you've managed to get statutory help for all of them, and already involve legal advocates, is one reason why some individuals in the council are not so sympathetic. Asking for the council itself to show 'compassion' may be a mistake; the council as a whole is trying to fulfil its duties and use resources in the best way. As you probably know, a lot of the time officials are not allowed to go in to the real reason services are denied.

    But your communication issues sound familiar to me. My posts on this forum can be even longer than yours, and I speak in generalities, into which some people insist on reading something personal, sometimes because they're not interested in the general point. What is actually relevant to the person I'm speaking to may be buried in a mass of context, caveats, ideas and exceptions. In fact, in all you wrote, it's not clear what is the actual current issue to resolve with the council. So looking for an intermediary or representative to make your points for you, in the way you've made them for the children, makes some sense. Do you have a social worker?  Another possibility is whoever provides mental health advocacy in your borough.

    Yes, as an adjustment, they should appreciate your communication difficulties. Perhaps just repeating back to you a list of priorities would be one way to do it. They will just want to concentrate on a single feasible task that is done by one team. However, having an intermediary (possibly a volunteer?) with the time to understand everything, might also allow you to learn some tricks to adapt to 'neurotypical format' official communication. If writing a long email, for example, you may want everything to go on the record, but there might be other ways of doing that. How about sending the longer text to yourself or one dedicated person to 'sound off', but then editing it down to a maximum of two sentences that are a specific positive request to a specific person, about one child or one thing you're asking for? Whether that would speed up their actions, I don't know.

    That was my attempt to make sense of what you've written. Sorry if I've missed the main point.