Autistic Mum At Crisis Point

Hi NAS35951, thank you so much for your message - your case link is interesting in that I didn't realise the onus was on the Employer to come up with reasonable adjustments - they have already asked me what adjustments I think I will require, have acknowledged what I asked for and then have told me that they are not prepared to make any reasonable adjustments at all to the post I am in as it will affect Service delivery.  I find the office environment very stressful not just in terms of physical environment but mainly because it adds so many other pressures to my home life - I have to get up really early to navigate the shower, clothes, hair and makeup effort and then I don't sleep at all because I know the whole day is going to eat into my very limited capacity and I'll be a nightmare when I get home....which is when I then have to start from scratch with two hungry and tired autistic children.  The only thing I have asked for is to be allowed to work from home (I live a ten minute walk from the office) and they have quite categorically stated that they require me in the office for 5 days a week.  I haven't even started to think about the more subtle adjustments that would be handy in terms of making my working life easier because if they can't get the basics then they have no chance at anything else.  I had a 'catch up' meeting before Christmas and my Manager's opening question was 'So How's It All Going Then?'.....open question...autism...it must have taken me about five minutes to give them the answer 'I don't know'.....and to be quite honest, if they can't see that one of their 'senior managers' doesn't have the head space to answer even what they would deem to be a simple question, then what do they actually think I'm going to produce in terms of my remit? I could go on forever about the incompetencies of my Employer and the management of my absence - they are a local authority and are not just bound by the Equality Act 2010 but also by the Public Sector Equality Act which states that public bodies should not only follow the Equality Act to the letter but they should be a good example of being an Equal Opportunities employer....which they absolutely are not.  No matter who I speak to they say that I haven't been treated properly but at the same time, no lawyer this far has really even wanted to look into my case.  I think it's probably because I'm still employed and the case will therefore not be 'big' enough if it goes to court....maybe I have to resign and try the constructive dismissal route or hang on in there until they dismiss me on grounds of capability...whether it's because of my absence or my inability to do the new role they've given me....but I can't imagine they'd be that stupid... 

My weakness is that I'm now too overwhelmed by my own autism, having two autistic young children and trying to hold down a full time professional job - it's just not possible.... I can't opt out of my children and they should be my priority but I am in fact compromising my own health and therefore the future of my children by even attempting to keep all this going....I know I need to give up my job - it's just how to do it without letting my Employer 'win' and without committing financial suicide myself.

Your son is very lucky to have your support - he will maybe realise it's there and be grateful for it in his own way....however, with autism it's sometimes difficult to see beyond yourself sometimes and you can't appreciate what's right in front of you at times.

Exactly NAS35951, this is exactly what I’m talking about. When I was working as a social worker, I swear I got my clients what they needed because I used the law and quoted it in my assessments. I was well aware, that my managers etc, used the very same law, to ‘not’ give clients what they needed, they simply interpreted it a different way. Despite this, as an agency worker, wherever I worked, they always wanted to employ me because allthough I got my clients what they needed, I was able to see when giving services would be detrimental to the client, so it kind of balanced out. And it didn’t rub off on the other workers, they continued to take the local authorities version of how they interpreted the law and hense, they often did not get their clients what they needed. This is why I strongly advised getting in touch with a disability rights group, as they know specifically how to navigate these laws. I only know that employers, absolutely have a duty of care to their employees, regardless of whether they often manage to get out of this. 

And you’re absolutely right about people ignoring the support that family members give. This is now a major consideration as part of the assessment process under the new care act. Of course it is getting interpreted the wrong way, but what it is really saying, is that you might be coping now, but let’s look at all the support you’re getting and let’s look to see if this is a long term solution or even  if it’s the best, etc, and let’s involve family members because their contribution is significant and has long since been not only ignored but minimised in its importance and it has an impact on their wellbeing as well. The new care act is incredible, but few can see that because they’re driven from a place of fear, which is unfounded and so they interpret it in the wrong way which is not only damaging for clients but destructive to social workers and others in that field as it grinds them down and takes away their ability to truly work in partnership with their clients. 

Employment Law actually actually quite effective if you can navigate its  legalistic structure.

it  appear employer protective only because the way employers and there lawyers use it to baffle and confuse you wear you down and trying to convince you you have no case when actually they expect to lose if you get to a tribunal.

If you are not getting reasonable adjustments  or being  discriminated against by the employers actions then you are in a very strong position. try looking here  

https://www.equalityhumanrights.com/en/advice-and-guidance/equality-act-guidance

reading the employer section make it clear they have an awful lot they must do . Unfortunately much advice you get sits on the fence Many lawyer even in unions are not very good on disability discrimination law.

Schools are also expected to make adjustment whether or not you or your children appear to be coping but most schools don't know it.

For example cases say Employers are expected to make adjustment including in working hours etc and the  case law confirms  it .

If you are having to work harder suffering any effects then  adjustments are mandatory for a big employer there is very little excuse they can make.

does the case  sound like your situation

http://www2.cipd.co.uk/pm/peoplemanagement/b/weblog/archive/2017/05/25/tribunal-confirms-employers-broad-duties-to-make-reasonable-adjustments.aspx

Disability related sickness is separate  from ordinary sickness but most employer don't know it

If when you have look you believe that the employer has not done everything they should have then you can got to a tribunal .You can do it yourself  of   approach someone like

Catherine Casserley  or one of her colleagues at  Cloister chambers  Phone: 020 7827 4000

Address: 1 Pump Court, Temple, London EC4Y 7AA - DX: LDE 452

They understand the equality act which is what you need ( they were involved in its creation)  and should be able to discuss  cost before you start any process. and can also give advice  on how you do it to keep costs down.

On the needing help side your Doctor should be able to refer you to Adult autism  support although the service is patchy.

You need to realistically    assess your weakness not your strengths as the system allows you to damage yourself by letting you appear to cope better that you do.

My 34 year asbergers son will says he copes but he ignores the support the family give him.

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. 

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. 

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....

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.  :-)

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 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....

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

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. :-)

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. 

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.