Our experience of having an adult assessed for ASD/Asperger’s Syndrome – Part 1.

I thought I would share with you our experience of what it was for us to have an adult assessed for ASD/Asperger’s Syndrome. I have made it into two parts because it was quite challenging for us, and I feel it needs more than one part just to explain what an ordeal it was for us.

Husband (who I met through an online roleplaying game) has always been a bit different. He has always felt like an outsider and like he hasn’t fitted in, and has wanted to make friends but not had a lot of success, and has always been wary of new things, people and places. He coped as a child, a teenager and later as an adult by developing coping strategies and because he had the support of his amazing parents and siblings, and later, yours truly. We just thought that ‘Oh, it’s just the way he is’.

Then, our nephew was assessed for and diagnosed with ASD in 2014. Just by chance I picked up and read one of the books his mother, Husband’s sister, had bought on the subject while we were visiting them.

And it just all fell into place.

I read, reread, and read again the book and the diagnosis criteria for ASD and Asperger’s and I just though to myself ‘oh my goodness me, Husband fits every almost single characteristic on here!’

It was as though someone’d just turned on the light.

I sat down with Husband and talked about what I had read and how I felt it applied to him, and what it could mean for him and for us to get a diagnosis.

When Husband was a teenager, he was seen by CAHMS (Children and Adolescent Mental Health Service), due to the anxiety he developed after he was diagnosed with epilepsy as a teenager. The psychiatrist who saw him at the time verbally diagnosed Husband with Asperger’s Syndrome, however felt that because of Husband’s anxiety at the time it would not be beneficial to him to pursue a diagnosis at that time so it was left.

Husband graduated from college in 2010 and while he held down odd jobs or temporary contract, he could not seem to secure anything full-time or permanent. He currently works part time close to where we live and he this has done wonders for his confidence, plus he was also able to secure a casual job at another place (until they started being jerks.). But Husband had always struggled at work with interactions and reading the intentions of others and this impacted him and still impacts him at work.

To start the ball rolling, Husband needed a referral from his GP – we got this and a social worker came to the house and visited us in October 2014. She then made a referral to the local hospital for an assessment.

Husband was assessed by the Asperger team at our local hospital in January and March 2015. At the end of these assessments, which were done by a speech therapist, the team concluded that Husband did not meet the clinical criteria for Autism Spectrum Disorder or Asperger’s Syndrome, and therefore they could not help him.

The team stated that the difficulties Husband was experiencing is seen in many children who have been in the care system. We felt that this is not the case with Husband at all, as he has lived with his adoptive parents from when he was six months old through to adulthood. He has lived in a loving, supportive family, and he has not lived anywhere else.

Because of this we challenged their decision and asked for a second opinion. In addition to this, we felt that the tests they used to assess Husband with there completely inappropriate for assessing adults with.

To illustrate: when we went to the second appointment in March, Husband had to do three tests. We immediately became concerned as the worker stated at the beginning of the appointment that they were using children’s tests as the department could not afford the tests for adults (!).

One of the tests they performed was that they read Husband a list of phrases and idioms, each with four possible answers, and Husband had to select which one was correct. So for example, what does ‘cut that out’ mean? And then there were four options as to what it meant ‘stop it’ ‘cut something out with scissors’ ‘go away’ or ‘edit something’. There were about twenty of these and the only one Husband didn’t get right was ‘like water on a duck’s back’ because he’d never heard that expression before, all the others he got right the first time.

I can understand why this test would be appropriate for a child but I am not confident this test would be appropriate for an adult. Having Asperger’s Syndrome does not mean that you do not retain information. Of course Husband knows what these mean as he is an ADULT and he will have heard these phrases at some point during his life, and will have learnt what they mean!

We also felt that they have completely disregarded the evidence Husband, his mother, and I gave to the social inclusion worker when she came to talk to Husband after he was referred by his GP in October. She asked Husband how he felt about eye contact for example, to which he replied that he knew he had to do it, but had to think about it a lot.

His mother and I raised at second assessment that Husband struggles with several different aspects of daily living, including changes in routine, going unfamiliar places, and situations where he’d be in a group. All of this seemed to be disregarded by the team.

So when the team announced that Husband did not meet the criteria in their opinion for Asperger’s Syndrome, and that they could not help him, I burst into tears. I cried all the way home and felt very despondent. It was as though they did not believe us at all and just dismissed all the evidence we had given.

When I had calmed down enough, Husband’s mother said we had the right to a second opinion. This was arranged and set for August 2015.

 

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Catch of the Day: Lovely reduced food.

Went to the train station to get Husband’s train tickets. Once done I decided to walk by the Tesco Express and Sainsbury’s Local in town while on my way to my bus stop.

Found these lovely babies:

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My lovely bargains! Husband was delighted at the potato salads and the sausages have gone right in the freezer.

An Organized October.

So October is over, how did we fare?

Good things about October were:

  • Having Husband’s friends stay over for a night and playing games with them and eating junk. Friends, and especially friends who understand, are balm for the soul. Husband is visiting them this weekend as I am at work. No surprises there.
  • My sister coming to visit me, and us spending two and a half days in London together for my birthday. My sister and her family and my family and Husband’s family have all been go generous. They all gave me spending money and while I initially put things back in the shops, my sister told me to stop doing that, and explained that the people who had gifted me the money would be sad if I didn’t treat myself. So I bought – are you sitting comfortably? Two pairs of shoes, two packs of new tights, three pyjama bottoms and two pyjama tops and! three new bras (let’s face it, when two of your bras are pulled from the washing machine having been ripped apart at the FRONT while being washed, they need to go). We spent two full days shopping, eating good food and talking. My sister also gifted me three pairs of jeans and she also brought….
  • All the food. Seriously, she brought us all the food from home from her and her family! She brought: Two lamb roasts, a whole ham, three big packs of wiener dogs and three packs of bratwursts, a side of smoked salmon, a pack of lean pork and a pack of lamb steak, and a pack of diced beef from the farm. It’s so nice to see the freezer full again and it will help us so much with the food budget.
  • Speaking of which, we were under budget for the food this month – Lidl down the street from us opened after having been closed for a month for refurbishment. They gave everyone a card which got them a free item if they spent £20 a week shopping there so we’ve been going each week.

Things that could have been improved about October were:

  • Husband’s PIP claim being refused completely. We are asking for a mandatory reconsideration.
  • Situation at Husband’s work place still carrying on. He has not had any hours there since the beginning of July and the union solicitors are not sure if they will be able to challenge their behaviour in court. The union are helping us appeal the outcome of the grievance hearing as we were not pleased with the response they gave us. It still seems they have very little insight into how to support someone with Asperger’s Syndrome, and they seem unwilling to take this onboard or get some awareness training. They are saying they will not use casual workers now due to operational costs which is why they say he has not been given any hours. Husband is looking for other work now.
  • Having to deal with some quite challenging behaviour at work from students. Some, who can help it, and some, who can’t.
  • Back at work now full time as uni is back in session as well, and the whole department has had some rather unsettling news about a proposed contract change. I have let the union know a change to my contract is detrimental to me and to us as a family. I will write more about this in a separate post but it has definitely made me and many of my colleagues unsettled and concerned.

All of this stuff, feeling like we are perpetually in limbo, is taking its toll on Husband’s mood and self confidence. It is being slowly eroded, particularly due to the lack of hours and care from his workplace.

Only this week he said he felt blue as he wishes someone had use for him and felt he was of significance. That he can’t ever help out or be useful to anyone.

However there has been one change – when Husband has felt like this in the past (and it has happened not infrequently), he has flat out refused to seek help for it. Now however he has said he will have a few sessions of therapy. Not going to be cheap but if it helps Husband feel better in himself and restore some faith in himself, then it’s worth all the money in the world.

I will end the post on a cute note with a picture of the Cat snuggling up under my scarf.

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‘Oh so this is yours? Cry me a river, human.’

Applying for PIP: Our experience, part 3.

(You can read part 1 and part 2 of the saga that is our experience of applying for PIP for Husband here)

Husband had his PIP assessment on the 4th of September.

We then had a a letter on the 23rd of September, from the DWP to say they now had all the information they needed to process our claim and that they would let us know what the outcome was in due course.

Then, a letter came on the 28th of September, and as I opened it and read it, I could feel a huge hole opening up under me.

DWP and Capita had decided that Husband was not entitled to PIP.

To receive PIP, you are scored out of 8 on most categories and out of 12 on two of them which concerns mobility.

Husband was scored 0 on each category for both Living and Mobility, meaning his score was a grand total of 0.

I genuinely could not believe their reasoning behind their decision to not award even a single point, in any category. The more I thought about it, the more I got angry about it/was convinced I was living in some weird alternative universe where Capita and DWP could either ignore or twist anything we had said.

I have been going through each section they scored Husband 0 on and explained and evidenced everything. We can ask them to do a Mandatory Reconsideration of their decision within one calendar month of receiving their decision letter. If we are still not happy with their decision after this, we can challenge their decision at tribunal.

Take Managing Money for example.

Husband was scored 0 for this which means they feel he can manage complex budgeting.

I have put the following in our Mandatory Reconsideration letter. Names removed for privacy purposes:

Making budgeting decisions (scored out of 6)

Your decision was to give me a score of 0 out of 6 points in this category as you have stated that ‘you can manage complex budgeting decisions unaided.’

I put the following in the PIP application regarding money and budgeting:

‘REDACTED manages at the moment as REDACTED is responsible for all the finances in the household, ensuring everything is paid in full and on time. Due to his dyslexia REDACTED struggles with reading and understanding bank statements and bills, and finds this frustrating, so he does not do it.

Bills are in REDACTED’s name and bills and expenses that have to be paid are done by REDACTED such as council tax, mobile phone bills and energy bills. REDACTED has his own bank account that his wages go into but he gives his wages to REDACTED to pay bills and for outgoings for the house. REDACTED explains to REDACTED if there are budget decisions to be made and the pros and cons of each choice so REDACTED can think about what he feels is best and this helps him decide. An example of how this has been done in the past was when REDACTED and REDACTED bought their own home. REDACTED did not see the value in owning a home however REDACTED explained to REDACTED that it would be the best decision to make for the future as they would not be able to rent all their lives.

If REDACTED did not have the support he gets with managing the household budgets, paying bills or planning future purchases, he knows ‘something bad would happen, something he does not want to think about.’ ‘

I also expanded on this in the section about reading:

‘REDACTED supports REDACTED by calculating his monthly timesheets and helping them fill them in as REDACTED’s workplace converts minutes to percentages, something REDACTED struggles with. When REDACTED had to complete his monthly timesheet once he stayed behind 25 minutes at his workplace. REDACTED felt this was very embarrassing as he was not able to work it out and his manager kept asking him if he had finished yet. REDACTED still had to submit this in the end and now takes them home for REDACTED to fill out as he feels it is too humiliating to try and work this out in front of his colleagues.’

I was asked about budgeting and managing money at the assessment, and I explained that I am able to go to the ATM and put my card in to withdraw money, and that I understand the number on the screen where it says the balance. I also explained that I can go to the shop and buy food for example and I would know how much change to get back.

I did explain however that I do not understand bills or my bank statements and that my wife reads these and deals with these for this reason. The assessor pressed me on this and asked me twice if I could understand it if I had been shown how to do it and I firmly said no both times. ‘

The refusal letter states that we have to send the Mandatory Reconsideration letter in within 28 days of the date on the refusal letter. So will do that next week.

Good grief.

Or just, you know, grief.

 

Current mood: >:'(

When we moved into our own home in February 2016, the bathroom was ok and worked fine for us. It’s nothing fancy, shower over bath, toilet, sink.

It has a lino floor that is a bit uneven and oddly cut around the toilet. The plan was eventually to replace the floor with something better.

I finished showering today and when I stepped out, Husband shouted up to me asking if I was done. I said yes, to which he replied that ‘there is a leak in the kitchen.’

I put a towel around me and went downstairs to take a look.

Our kitchen is directly below our bathroom, and there is a gap between the lino floor and the bathtub where it doesn’t cover it. I put towels down to soak up water that might go there but it now seems that isn’t sufficient as there was water dripping from the ceiling where I know the edge of the bathtub is, one floor above.

Great. Just great. I had planned to replace the flooring there eventually but not right now as Husband has not had any hours since the 28th of July and things are tight. But I guess we have to now. Can’t have water damage, it’ll void the insurance and become more expensive and hard to fix in the long run if we don’t get it sorted now.

All the same. This together with Husband being refused for PIP last week (I’ll do a more detailed post about this) is sending my mood into a familiar spiral downwards now.

Have been walking around with a lump in my throat all afternoon.

 

Our back garden after having lived here a year and plans for next year.

Even though we are having a mild October thus far, it cannot be escaped that winter is coming.

We bought the house in February 2016 and our first summer here was spent just getting the house together and coming to terms with that my mother is terminally ill, after we received the news in May 2016 that her cancer is now too far advanced to treat.

So I didn’t do a lot in the garden. I hung washing in it on the line, and that was it.

So this summer I wanted to at least try to grow some things. I decided to try growing some herbs, and I wanted to try some nasturtiums as well. I was also gifted some plants before term ended at the college.

Safe to say, the nasturtiums did very well! But interestingly the ones that did the best were the ones we planted right into the flower bed rather than in the pot. I bought two packs of seeds for £2 and didn’t even use the other pack. I have been eating the leaves in salads and in sandwiches all summer so a very worthwhile investment.

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Nasturtiums just taking over the garden now.
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Look at it! Even the savage sage plant is a dwarf in comparison to the nasturtiums.
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Our bounty; a lone tomato. Gave it to Husband so he could have it in his salad, he said it was lovely and sweet.

Although tomato plants are not perennial, I have decided to try and winter them. I’ll take them to the top floor of our house and cover a section of the floor with newspapers – because they did grow tomatoes eventually and I want to give them a chance.

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Looking a bit forlorn now, I wonder if I can winter them?

For next year I think I will do the following:

  • I have managed to grow nasturtiums (probably through sheer dumb luck); I will try lettuce next year, and sow them as soon as it’s warm enough outside to do it. If my niece can inadvertently grow some by sprinkling some seeds in an unused sink in the garden, then I can do it too!
  • If wintering the tomato plants and pepper plant doesn’t work out I will buy some plants from the garden centre as soon as it’s warm enough. I may also try some cucumber plants next year.
  • Maybe get a fire pit or brazier? We have two deck chairs we have been gifted and it would be nice to sit outside with it in the back yard in the evening.
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The acer in the back yard is starting to turn, looking lovely ^_^

 

A Sundry September.

September has been an interesting month.

Good points about September were:

  • We finally had the PIP assessment and grievance meeting for Husband.
  • Husband has become more confident in cooking and is thinking about more and more recipes he wants to try.
  • We got some lovely bargains reduced at the shop.
  • We were under budget on the old grocery shop. No large part due to the meat and food my sister and her family send with us when we were home in August.
  • We sold some things on eBay, everything helps for the Japan/Good-to-Have Fund!

Things that could be improved about September were:

  • Husband still has not been given any hours at the job where the grievance is. And we’ve had two letters from them which are the most unprofessional ‘professional’ letters we have ever seen, so with support of the union we will appeal their decision. This impacts on Husband’s mental health a great deal.
  • PIP still drags on. We rang them on the 10th of May to get this started so it seems to take a long time. DWP sent us their decision letter on the 28th of September. Their decision is to not award Husband PIP, and in each category, they have scored Husband 0 out of 8 or 12 points, meaning they don’t feel he needs support in these areas. I am changing between feeling tearful and incandescent about this. We are having the mandatory reconsideration and then going to tribunal about this. It does make me wonder what happens to people who don’t have anyone to advocate for them.