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.
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
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
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.
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.