I really need some help and don’t know who to ask any more.
I am a 50 year old recently diagnosed autistic Mum of two young children. My son is aged 9 and is diagnosed with an autistic spectrum condition and ADHD and my daughter who is aged 6 has not been diagnosed as yet but displays many autistic traits - even starting the ball rolling for an assessment for her fills me with dread so we just assume she is autistic, and try to support her as best we can.
My biggest challenge this far has been that, like everything else these days, you have to be absolutely broken before anyone even looks your way. I have spent my whole life trying to shave off the edges of my square peg and make it fit into the round hole that is life and now, it would appear that I have done it too well.
I have always been at ‘capacity’ in terms of daily living as I had managed to secure a full time professional job which used up a lot of my capacity but i was able to ‘manage’ that when it was just me and a job that I had to cope with. Add a relationship and two small children to that mix and gradually my little snowball has been set off down a massive hill, gathering speed, getting bigger and bigger and it’s just about to smash into a brick wall and explode into a million tiny pieces that will never go back together again.
I have subtly asked for help through various avenues over the last eight years but because everything ‘appears’ okay and the children have two parents, a roof over their head, are getting fed and not being mistreated then we just have to be okay. There are no resources anywhere and there are so many other children and families in a much worse position who need any resource that is available.
However, I am now at absolute crisis point where I’m not able to get myself through a day, never mind look after my children properly and turn up for my job. The knock on effect of everything that has happened has eventually caused our family unit to break down, which is the worst thing that could have happened to two young autistic children, I have been off work so often now that my employers are making it very difficult for me to hold onto my job, but I need my job in order to pay my mortgage.
I don’t know who to turn to to get some help - there doesn’t seem to be anyone who can help me with the whole picture. I can attend my local One Stop Shop and can talk about my autism, which is great, but there are obviously no solutions and they can’t really help me to get help with my children. CHIP+ and The Pines can’t really help me with my own autism as they deal with the children’s side of things and you have to proactively seek out their help in terms of attending workshops etc. I have had no personal help or support at all for my children either at home or in school as we all appear to be coping. Occupational Health Doctors and GP’s don’t seem to know enough about autism and deem me fit for work (although I haven’t been able to get a referral to OH for months now) and my employers are only interested in the business and want me to carry out my job the way I did before, and if I can’t, then I should leave.
This year my relationship has broken down, the family house out in the country was sold, we moved into two separate houses in the city, we changed the children’s school, I was diagnosed autistic, my public body employer has treated me disgracefully so I have had to have dealings with Union Representatives, Union Lawyers, ACAS lawyers, and all to no avail. My children have recently been put on the 'at risk' list by the school and I have lost all my pride and dignity altogether now. I feel like a pawn in a game where I haven’t a clue what the rules are, what the objective of the game is, who is on ‘my side’, but that the game is going ahead regardless…. I am totally lost and feel like my whole life is out of control and that nobody has a clue what is really going on for me….and if they do, they don’t know how to help or don’t have the resources to help.
I feel that there is no good way for this all to end….I will either end up in the local psychiatric hospital, not be allowed to look after my children any more, have no job and no house or I won’t be here at all…..there is no money to allow any public services to be proactive nowadays….it’s all reactive….and sometimes the reaction comes too late.
I am proud of everything I have achieved in my life but it has been a massive struggle and I’ve got nothing left to give any more. There is a part of me that still wants to fight, not for me, but for my children and the younger autistic population and I would want to shame my employer and prevent similar things from happening again, but the odds seem to be stacked against me and Employment Law tends to protect the Employer and not the Employee.
If I could somehow get out of my job without committing financial suicide or at least with my pension then I would slowly be able to pick up the pieces of my life and concentrate on getting myself better so that I can at least be there for my children and try and set them on the right path before it’s too late for them as well, but I have no idea how to do that.
If anyone can help me at all, can suggest a good employment lawyer who knows something about autism, or can give me any ideas on what to do next I would be extremely grateful.
What a dreadful time to be going through, I think you're doing remarkably well to hold on. I was diagnosed with ASD this year, my partner left me 6 weeks after my diagnosis and I had an awful employer too, so understand some of what you're going through. As my employers were such gits I ended up having one day off sick for every 3 days I worked last year. In the end I made a formal complaint, which resulted in me being offered a settlement agreement to leave. This normally involves a pay agreement of 6 months wages, plus any unused holiday pay to leave the company. I also negotiated an agreed reference. As soon as I knew I was leaving a huge weight lifted and I secured a new job within just a few days. I start this on Monday and they've already agreed to all of the RAs I need.
If your employer was willing to sign a settlement agreement, do you think the breather would do you good? It could provide you with a few months head space to get everything in order. You may also be eligible for benefits as you employment will effectively be terminated but I'd suggest speaking to your local council's benefit advisor about this.
I am about to start counselling to help me process the difficulties I have had from being ASD as well as my awful employers (I took a previous one to court). The NHS have offered me a number of free sessions as then have autism specialists.
Hi Jaxster, I just wanted to say that sound incredibly strong and you will get through this. You're having to deal with so much, it's no wonder that you're becoming unwell. Are you able to see another gp and explain things as you've written them down here? Your post really shows the sheer amount of pressure that you are under.
Thinking of you, hope that you start to get the help and support that you deserve.
Thank you for your message - it's much appreciated. I had a case that was going to Tribunal a few months ago and used that as a basis for asking my Employer if they would let me go on Early Release but they wouldn't do it because I would cost them too much, so I was advised by the lawyer to return to work and see what would happen next. I have been using accrued annual leave to allow me to do a 3 day week and that is the only reason I'm still standing at the moment. I have 30 years service and will be damned if I have sacrificed most of my life to get to where I've gotten to to fall at the last hurdle. I am at an age where the last thing I need is to actively seek out employment - I don't know anything else other than my public sector job and being autistic means that I'd rather keep my hand in the fire knowing that it's burning because I'm too scared to take my hand out for not knowing what's going to happen when I do. If I could get access to my pension then that would cover my mortgage and allow me to live and if I need to get a little job that I can work round in terms of the children to help me live a little better then I could do that no problem. I just need to create myself some capacity so that I can concentrate on getting myself better and hopefully find some peace in my life somewhere down the line. :-)
This sounds very much like my situation only I’ve only got me to take care of now. My heart goes out to you. The best thing I could suggest as a first step would be to contact a local disability rights group. I did this recently, through sheer desperation (I got diagnosed at the end of October last year), and it felt like the first real step I took. The first step was admitting to my work coach at the job centre, about what daily life is actually like for me. She just looked at me and stared, and said, you need help. She said before I can even start thinking about work, I need some help. And she certainly moved into action, very quickly, and got me some help.
But before I got that help, I called the disability rights group and a surprising thing happened, which turned out to be the game changer for me. The way the woman spoke to me. not only showed me that she understood completely, but that I had rights. I had never really viewed myself as ‘disabled’ but through her understanding, I was able to see, that based on the current model of disability, the social model, I am disabled and I’m as deserving as the next man to have my rights upheld.
What happened was my mindset change. I was no longer thinking, oh but services are financially stretched etc and there are people ‘worse off’ than me etc, and instead I’m thinking, I’m a human being of worth and value and right now, I need help. And just because I’ve managed EXCEEDINGLY well (more than they, not you, could ever know) it doesn’t mean it wasn’t f*****g hard and that I have now reached my limit and now I need help.
Just after that I started to get help from the local authority wellbeing team. Which is great, it’s a slow process, but I’m getting somewhere. I’m moving up and not down, even though it’s still up and down.
But probably the biggest help from all this. Was that talking to that woman from the disability rights group, somehow made the world stop, for just a few seconds. Long enough for me to get a kind of base, a bit of a grip on it all. I thought I was spiralling out of control, everything was messed up and I couldn’t make sense of any of it. But that moment of stopping, helped ground me.
By seeing myself as disabled, it has given me a kind of anchor. This doesn’t mean I will always be ‘disabled’ or anything like that. It just means that right now, my autism and all the stress and strain of the years of masking and fitting in, has taken its toll on me and slowly, my whole perspective on life is changing.
It’s true, that sometimes we have to break down, to break through. I know now, that I certainly had to because my coping mechanisms are so strong, that if it wasn’t for this group, I’d think I was making all this up, and I’d somehow just get on with things.
Right now, your options seem few and all terrible, but this will change once you begin to allow yourself to be you. Which you will, when you start getting some support. I promise you, this is a good thing what’s happening right now, you couldn’t and wouldn’t want to carry on as you were, something had to change. You’re gonna be ok. The disability rights groups are amazing and are run by people just like us. You more than deserve some help, just as much as anyone and you don’t have to wait until things are all perfect again before you can start to feel ok again. Once you’ve got someone in your corner and they help you to start getting this into some kind of perspective that is going to help you, you’ll start feeling better.
Honestly, my whole outlook on life is changing, and it’s all good. But it’s a process. You’re also entitled to access to free independent advocacy which you can reach through your local social services. Advocates are great as well, so you might contact them as well. Good luck. X
Hi Moomin, thank you. I know I have been really strong all my life and I've gotten this far - but depending on which part of my brain feels strongest I swing between giving up altogether and being able to keep going. I don't have anything left any more and my head is more often than not completely non functioning so everything I do seems even more difficult than it was before, and with two small autistic children throwing me curveballs every time I am with them I am at a loss as to what to do and I feel like a total failure. I have virtually spent the whole of my weekend off from the kids in my bed as I haven't had the will to go and do anything even though I have a million things needing done and I am back at work in the morning....
Yeah, definitely get in touch with a disability rights group. You cannot let them pull the rug from under you now. They have a moral duty and a responsibility towards you whether they like it or not. Our ‘disability’ may be hidden and invisible but it’s real, and it’s not based on our actions. It’s far more complex than that. You need sound advice but also someone who you know is 100% in your corner, and the disability rights group will do that. Hang in there.
Your goal is to stop work (whether temporarily or for longer) as soon as possible while ensuring that you are not in any way going to lose financially. No way. You can do this. I don’t care how much it will cost your employer, they have a duty of care towards their employees, they might think money is more important than human life but they’re wrong, and they’re wrong if they think they are going to shaft you now.
You need a break and you need some support and you’re going to get it. I’m all behind you, like the wind beneath your sails, you can do this.
Hi BlueRay, thank you. I totally agree with everything you are saying - I just haven't met the lady from the disability rights group yet. I phoned the NAS helpline before Christmas and they sent me a long email signposting me to all sorts of bodies and I contacted many of them - the Equality Advisory Service, Advocacy Highland, the Disability Law Service etc, but all to no avail. At the moment I think it is the fact that I am still employed and in a management role that is making it difficult for people to work out what it is I need - in order for some of the bodies to be able to help I would have needed to have qualified for Legal Aid but because I don't, they can't help. Like you've said though, I can't keep going on the way I am and events are going to overtake and change will happen.... Splitting up the family home was not a decision I would ever have made myself but my partner made the decision for me, partly selfishly on his behalf but partly because he thinks that in the longer term, it should make things better for me.... and I know he's right. If I could just get access to my pension then that would cover my mortgage and allow me to live and if I need to get a little job that I can work round in terms of the children to help me live a little better then I could do that no problem. I just need some time to create myself some capacity so that I can concentrate on getting myself better and hopefully find some peace in my life somewhere down the line. I am so glad that you are moving in the right direction though and as you say, it just takes that one event or one person to start things moving differently and for the better....I'm sure that person is out there somewhere for me too. :-)
Thank you so much - even just hearing your words of support make me feel a bit better, and even just a bit overwhelmed at the same time! Must go to bed now though and try and get some sleep before the dreaded office in the morning....
Yes, get as much rest as you can. Remember, we can only ever take one step at a time, so just do that and don’t think about all the rest. Your step right now is for sleep. Make sure you’re getting as much good nourishment as possible as well and stay hydrated. You need the fuel to energise you and the fluid to keep you going with a clear a mind as possible.
Even amongst the chaos, you’ve still got a clear mind about what you need which means you will get what you need, you really will. There will be someone out there who can help you with this.