Social services don't care about me. The NHS don't care about me. Advocacy workers ignore me. I can't find a support worker; there aren't any available at the moment at the few companies that bother to reply to my e-mails at all. Now even the citizens advice bureau are ignoring all my e-mails!
I can't find anyone that's interested in helping me at all!
I've got noone to turn to!
I can't find anyone that's interested in helping me at all!
I'm going to give some tough advice here but please at least consider it as it may help. Of course feel free to ignore it of flame me, whatever works for you,
What is the one common element here?
You.
Why would they treat you this way?
I would hazzard a guess that you are challenging for them to work with for some reason, whether it is communication difficulties with them, you having very different expectations of what you want versus what they can offer, difficulty in regulating emotion (frustration, anger, fear etc) or something else that makes you a lot of hard work for them.
Finding support staff with the skils to handle a really difficult customer is rare (I used to teach classes in this when I worked for an American bank as so few staff know how to de-escalate a conflict situation or properly manage customer expectations).
There are the more common issues I have experienced from many decades working in customer service departments.
These resut in the support staff being either unable to help, unwilling to help or a gulf between what is being asked for and what can be provided not being understood.
How can it be fixed?
From your side I would go back to basics and draw up a detailed list of what you want help with, while keeping each item as simple as it can be and get a neurotypical to help read over it with you to see if this reads well.
You will have to do this for each service you interact with as each offer different services and you must tailor the list to what they have jurisdiction over. No point going to the butchers shop and asking for a pack of headache tablets for example.
When you next engage with them, explain you have a list to work through and ask them to go over the points in brief to see if they believe they can actually cover each point. Mark up the points they don't cover for review later.
Make sure you get the name of the person you are speaking to in case you need to come back to them later.
Once you know what they cover then go through them one by one, making notes as you go (maybe record the call, but tell them you are doing this beforehand as it may be illegal to record without permission) and get all the information in one place for later review.
If they say they can't help then ask why and ask who they think could help. This can result in a bit of a round the houses chase at times.
Do your best to be as level headed during this process if you can. Heightened stress/anxiety levels will mean you miss stuff, don't get a complete answer or end up saying stuff you shouldn't - if you cannot manage this then get someone to make the call for you while you are present.
Set a realistic goal of 50% of things addressed on your first attempt.
In the event you are getting no response then find out what the complaints procedure is for the body in question and follow it, but always keep it polite and direct. Get the names of whoever you speak with and use these to relay and feedback to the body in question.
Why should I have to do this?
Because it is the only thing you have control over.
These bodies often have lowly paid staff with barely adequate training and if you end up in a confrontational conversation with them for any reason then they are quite rightly going to cut you off - they have as much right to protection as you from any sort of abuse.
Think of it as using you lifetime of experience of masking to good effect. In some ways it is a game we have to play to get the help we need so lock up the anger and frustration for the half hour of the call and be that person the support team are happy to help.
Yes it sucks but it is what it takes to get results.
I can't find anyone that's interested in helping me at all!
I'm going to give some tough advice here but please at least consider it as it may help. Of course feel free to ignore it of flame me, whatever works for you,
What is the one common element here?
You.
Why would they treat you this way?
I would hazzard a guess that you are challenging for them to work with for some reason, whether it is communication difficulties with them, you having very different expectations of what you want versus what they can offer, difficulty in regulating emotion (frustration, anger, fear etc) or something else that makes you a lot of hard work for them.
Finding support staff with the skils to handle a really difficult customer is rare (I used to teach classes in this when I worked for an American bank as so few staff know how to de-escalate a conflict situation or properly manage customer expectations).
There are the more common issues I have experienced from many decades working in customer service departments.
These resut in the support staff being either unable to help, unwilling to help or a gulf between what is being asked for and what can be provided not being understood.
How can it be fixed?
From your side I would go back to basics and draw up a detailed list of what you want help with, while keeping each item as simple as it can be and get a neurotypical to help read over it with you to see if this reads well.
You will have to do this for each service you interact with as each offer different services and you must tailor the list to what they have jurisdiction over. No point going to the butchers shop and asking for a pack of headache tablets for example.
When you next engage with them, explain you have a list to work through and ask them to go over the points in brief to see if they believe they can actually cover each point. Mark up the points they don't cover for review later.
Make sure you get the name of the person you are speaking to in case you need to come back to them later.
Once you know what they cover then go through them one by one, making notes as you go (maybe record the call, but tell them you are doing this beforehand as it may be illegal to record without permission) and get all the information in one place for later review.
If they say they can't help then ask why and ask who they think could help. This can result in a bit of a round the houses chase at times.
Do your best to be as level headed during this process if you can. Heightened stress/anxiety levels will mean you miss stuff, don't get a complete answer or end up saying stuff you shouldn't - if you cannot manage this then get someone to make the call for you while you are present.
Set a realistic goal of 50% of things addressed on your first attempt.
In the event you are getting no response then find out what the complaints procedure is for the body in question and follow it, but always keep it polite and direct. Get the names of whoever you speak with and use these to relay and feedback to the body in question.
Why should I have to do this?
Because it is the only thing you have control over.
These bodies often have lowly paid staff with barely adequate training and if you end up in a confrontational conversation with them for any reason then they are quite rightly going to cut you off - they have as much right to protection as you from any sort of abuse.
Think of it as using you lifetime of experience of masking to good effect. In some ways it is a game we have to play to get the help we need so lock up the anger and frustration for the half hour of the call and be that person the support team are happy to help.
Yes it sucks but it is what it takes to get results.
