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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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 situation: We’re still waiting.

So.

We had the grievance meeting concerning the experience Husband has had at his workplace in the beginning of the month. It was attended by our union rep, Husband and myself. From the employer’s side came the treasurer, who had been tasked with investigating our grievance.

I can’t deny, I felt a bit bad for her. After Husband’s boss left in July, the treasurer had been thrown in and has had to sort everything out from staff rotas etc. while training the new manager. So she hasn’t been able to get any information from her regarding our claims. But she did use the fact that Husband’s boss isn’t there anymore as a shield for a lot of the stuff we were concerned about – when it is in fact the whole organization who is at fault. Everyone is responsible for ensuring they are compliant with Equality and Diversity in the workplace. It’s as though there’s a culture there of that this kind of behaviour is acceptable. Nobody seems to challenge it, anyway, and that means accepting it, in my book.

Husband still has not had any hours since the end of July. The union rep queried this and what the treasurer said is that while Husband did put his holidays in the calendar, as he had not put his availability in the calendar, he was not scheduled to work any shifts.

Apparently when Husband’s boss was leaving, the treasurer took over putting together the rotas for the summer. The treasurer told the boss and deputy that she would be doing this based on what was put in the calendar, and to cascade this information to the staff so they would put their availability in the calendar.

They don’t seem to have told Husband this. In addition he went in with his timesheet in the beginning of August and verbally told the deputy he was available to work. They said they might have some work for him the following week, but of course we heard nothing. Can’t help but think the deputy is responsible for a lot of the upset Husband has gone through.

What really grinds my gears as well is that Husband has for three whole years while volunteering and later working there, always been given his shifts by text. Every. Single. Week. Why would he just understand that the procedure was different, unless he was told what to do?

We learnt that the workplace are in severe trouble financially due to parents either being in poor financial straits themselves or for simply not paying their bills. According to the treasurer, they’ve now had to sell some of the debt on to debt collection as the workplace is stretched very thin financially.

The treasurer did not say it directly but implied it was the main reason why Husband’s boss was asked to leave as she’d given people too many chances and agreed to let them pay in installments.

Because of this they will not be using any relief workers at the workplace apart from the holidays now, as they are contractually obligated to pay the manager and deputy, and the two apprentices they have.

The workplace has taken the log we have kept with what has happened to Husband, and also our list of Reasonable Adjustments, and will respond to these. Eventually.

Husband still wants to pursue the grievance as he feels it’s important to see through to the finish, but he has resigned himself to the fact that he now needs to consider his options.

Back to jobhunting, now. He naturally finds this quite daunting as he has not done this for three years.

This time it will be different though. Husband now has a diagnosis of Asperger’s Syndrome and we are exploring what support there is available for him through Jobcentreplus and Remploy.

All the same, I am worried about him and his mental health as I will be going back to work six days a week starting Monday. I wish i could spend more time at home to support him, but as the main breadwinner it’s just not possible. We need the money now. More than ever.

The unknown of trying new things. And the delight of finding you can manage.

Husband did something that’s not quite like him this week, and managed it as well.

He made dinner for me! And, he made something that he hadn’t made before, and he managed to do it.

For the uninitiated: Some people who have Asperger’s Syndrome struggle with things that are new and different, and encountering these things make them anxious. Some may also need very clear instructions and support with doing tasks.

For Husband, saying ‘just cook it until it’s golden all over’ for example is not helpful as he won’t understand what that would mean. How long is that for? And what shade of golden? Instead, you say ‘preheat the oven for 5 minutes. After the oven has preheated for 5 minutes, put the food in at 180 degrees for 45 minutes. Set a timer on your phone for it.’

Husband does cook but it has to be things he knows and has made before. Even then he will ask me to come and check the food and check it’s going ok.

I asked Husband if he could cook dinner on Wednesday as it is normally the hardest day at work for me, as it is so busy. He said he would and then said he would cook something new, try something different. I said that was ok and to think about what to buy and to check the cupboards as well, and I said if it didn’t work that we could have a takeout, that that would also be fine.

He said he would try making what he had in mind, and asked me to buy some crusty bread on my way home.

Well! I came home from work and we had this!

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Husband made dinner! Potato, carrot and onion soup with mixed herbs, garlic and bacon.

He was so pleased with himself that me managed to do the recipe first time around with no support. It was delicious and he has said he will make it again for us. He explained to me in great detail how he’d researched recipes, gone up to the Co-Op to buy the ingredients and then peeled and chopped everything.

It might seem odd for some to celebrate it. But I am so proud of him for giving it a go and I can tell he was pleased with it, and that it’s given his confidence a boost. It is a big deal for him and I will continue to encourage him to try new things in future.

 

Applying for PIP: Our experience, part 2.

(Have you read Part 1 yet? If not, you can do so here.)

Husband was assessed by someone from Capita in our home for his assessment for PIP; after a slight hiccup as she could not find our house we got started.

To start the PIP assessment you have to show two kinds of identification; we chose Husband’s passport and birth certificate for this purpose.

The lady had a laptop where she wrote all her answers down and she stayed for about an hour.

I have mixed feelings about how Husband’s assessment went.

An hour is in my opinion not enough to accurately gauge someone’s needs and how well they function in everyday life in my opinion. Husband presents very well but does need a lot of support with everyday living – and how can you assess that from sitting across from him in a chair and asking questions? Surely you need to see what he does to cope with day to day living to make that assessment?

I’d read through our PIP form to remind myself what we said, and I stupidly assumed we would be asked about what we had put on the form. But when the lady started, she seemed to jump back and forth between different points, which threw me a bit.

She asked Husband about his mental health, how he coped at school (asking about support he was offered there) and how he copes with going out and meeting new people. Thank goodness I was there to be able to fill in extra information.

One particular point which irked me was when she was asking Husband about finances and how he copes with reading forms and correspondence. We stated on the form and Husband reiterated during the assessment that he isn’t able to read and understand his bank statements and do forms as he doesn’t understand them. I help him with this; when he does job applications I will read him the questions and he answers them, and I fill in forms for him. I read his bank statements when they come to see if there are any discrepancies as he doesn’t understand them.

Well this lady laboured this part in particular, asking Husband three times, ‘but do you think you could do it with support, if someone showed you what to do?’ and Husband answered no each time.

Couldn’t help but get a bit cross with her. We explained on the form that he struggles with this and why and that I am the one doing it. Husband said on the form that if he had to do it he wouldn’t understand what to do, or what the forms or numbers mean.

Was she trying to catch Husband out by making out that his support needs seem less than they are?

And what does that insinuate about me, exactly? That I’m somehow controlling everything and not giving Husband a chance to try?

Husband trusts me to do the right thing. I know his banking details and information but always ask before accessing this and I would never do something without his consent or without his knowledge. I have more than once in our relationship let him know that if he wants to sit with me as I go through things and have me explain things, I am more than happy to do that. If there is something I feel we need to do, I take the time to explain it to him so we can discuss what we do next. And everything I have ever done is in Husband’s best interest regarding money, bills, planning, applying for stuff, planning for the future.

And believe me I have looked as I know that you can get a Lasting Power of Attorney in place. I just don’t feel that would be appropriate for us at this time as he is capable of making his own decisions and I feel an LPA would make our relationship very uneven. We are husband and wife and as such equal in our relationship, and putting an LPA in place for Husband would shift the balance of the relationship away from Husband in my opinion.

Nevermind. It’s done now and we have to wait to hear what the DWP say. But I am bracing myself as I am fully prepared for having to appeal their decision if they turn our application down.

One thing to note is that this process does take time and that you need to be patient. I rang the PIP hotline on the 19th of May to start the process off, and we are still waiting for a decision. So this process is not for people who are impatient/have no income ><.

An Assorted August.

Well! Back to work with a bang now. Term starts at the college on the 4th of September and I’ve been back at work since the 30th.

It’s been a mixed-bag summer and an Assorted August.

Good points about August were:

  • Visited Husband’s friend and fiance for a weekend, something he really needed. Feeling wanted and like he matters is so important for him.
  • Still being on vacation. I had a chance to relax and bar a few things I was able to do most of what I wanted on my list.
  • Visiting family back home in Norway for a week. We were able to visit my sister, brother, my mother and my best friend and her family in the space of a week. We were able to attend my brother’s Summer Festival at his house where he served home made chili and garlic sausages and homebrewed beer and cider. I was able to go to a flea market with my sister, just her and me. Husband had a lovely time and felt very calm when returning home; he spent a lot of time with my nephews which he enjoyed.
  • My sister and her family are so generous. Going back to the UK she sent 11 kilos of food with us and several pieces of clothing that she no longer wanted. Great for our food budget and great for me, as I’ve lost weight and now only two pairs of trousers fit me. Husband was finally given his 30th birthday present from them (it was a surprise) – a new computer they’d upgraded with more fans, space and a very good graphics card. He has spent the time since we got back tinkering with it and installing games on it.
  • We were under budget for our grocery spend again ❤

 

Things that could have been improved about August were:

  • Husband’s mental health and how upset he is about how work are treating him. Since my July post about his work, he has not been given any hours, so as of today he has not been given any hours for over a month. Going in at the beginning of the month with his time sheet and finding new staff there did not help either. So August has been spent spending time with him and family, trying to distract him from how rubbish he is feeling. It is really eroding his self-confidence and his faith in himself now. Words fail me in describing how upset I am about this and how I can tell it’s affecting him.
  • While at my brother’s party in Norway, something bit me on the leg; probably mosquitoes. The inside of my right ankle turned purplish-red and the whole ankle swelled up. The day after we got back it was so swollen and painful I couldn’t stand on it at all and so Husband went to the pharmacy for some advice. He came back with some hydro-cortisone cream and antihistamines to get it to calm down but it was still just as angry the day after, so went back to the pharmacy after work and asked if they could give me anything else for it. They took a look and advised going to the doctors as they were concerned it could have gotten infected. I went and was prescribed Flucloxacillin.  Am on it now and feel better already but buying the medicines has set us back £13.80. I understand, needs must, but not really what we need right now with Husband not working very much at all. Unexpected expenses are frustrating.

We are due to have Husband assessed for PIP on Monday and the day after we are meeting with Husband’s workplace together with the union to discuss his grievance. I would be lying if I said I was not anxious about these things but have to hold it together. For Husband’s sake.

Applying for PIP: Our experience – part 1.

Husband was diagnosed with Asperger’s Syndrome in August 2015. After receiving the confirmation, we knew this could help us as having the diagnosis confirmation would mean he could get more support such as through Remploy or through seeing a Disability Work Adviser at the *shudder* Jobcentre *shudder*. However it was not until this year that we were made aware by a family member that Husband might be eligible for PIP as I do support him with a lot of daily living activities and help him with his mobility.

(As an aside, from my experience, government agencies will not tell you you may be eligible for anything. You have to investigate this or find out for yourself, nothing seems to be just handed over in terms of information and advice. I also feel that they make the process of applying for these things so convoluted to deliberately deter people from applying. If Husband had not had people to help him with this he would not have applied for this – maybe that is the strategy of the current government?)

PIP or Personal Independence Payments are there to help people manage the costs of having a long term illness or disability. It’s comprised of two components, a daily living component and a mobility component.

Calling the PIP hotline:

You start the process by ringing the PIP hotline and asking for a form. I rang the PIP hotline on the 10th of May on Husband’s behalf as he gets flustered when asked a lot of questions as he needs time to answer. I was on hold for about 15 minutes; they are only open until 6pm and I get home from work at 5pm so I can imagine many people were in the same boat as us and trying to call before they closed.

Before you ring the website asks you to have some details ready; date of birth, contact details, your National Insurance number, your bank or building society account number and sort code and the name, address and phone number of your doctor or anyone else who they can contact about your condition. This did not apply to us as such but they also ask you about if you’ve stayed in a care home, hospital or been abroad for more than a certain length of time in the last five years.

The lady who answered had to confirm with Husband I was allowed to make the call on his behalf and read the declaration to him, but apart from that I did most of the call. I am glad I did as the lady who took our call was quite short with us I felt and did not seem that interested in what we had to say. I get that she probably has to follow a script but I would have felt quite intimidated if I’d have to deal with her again. The call took about 15 minutes to do.

At the end they said they would send the form to us in the post and they gave us a phone number to ring if the form had not arrived within two weeks.

The PIP form:

Our form arrived on the 23rd of May. Look at this beast of a form! Look at it!

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Allllllllllrighty then.

As it’s quite complicated and detailed, I dedicated time to do at least a page of it a night. Some of the pages do not apply to Husband so can be skipped (like helping with toileting or mobility issues).

If I had known about this I would have kept a log of the things I have supported Husband with, really kicking myself for not doing this now. Ah well, hindsight and all that.

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Lots of tick-boxes but you do have a chance to add additional information.

We were advised by different people to really labour what would happen if the support to do these everyday activities were not there and how this would impact him and his ability to live independently.

While I was working on it, I suddenly had a brainwave. When Husband was being assessed for Asperger’s Syndrome, I realized that the support tutor he used to have at college was still working there (I now work at the college he used to attend), and so I asked if she would write a letter on his behalf regarding how he presented as a teenager and what support she had. She wrote us a great and supportive letter, which I kept and now added a copy of to our PIP application. I also added copies of the diagnosis paperwork the psychiatrist sent us.

The support of Husband’s family was invaluable for getting the form done, especially husband’s sister whose little boy was diagnosed with ASD about three years ago. They applied for PIP for him so she read through what we’d put and made a lot of useful suggestions based on her experience. Husband’s mother also had a read and came up with a lot of helpful ideas.

Sent the form off on Tuesday the 6th of June, so pleased with myself!

The time between sending the form off and being assessed:

But apparently it would not be all plain sailing, even though we’d ensured we evidenced everything:

PIP
Oh joy.

Great. But. I sent it back using the prepaid envelope and got Proof of Postage at the Post Office Counter to prove I sent it, plus I photocopied the form once we had filled in, because, you never know! I am a great believer in hard copies.

Husband had a text on Monday the 12th of June to let us know they had received the form. We then had a letter from the DWP on the 23rd of June to say that Husband’s PIP claim would be assessed by Capita. I hadn’t even heard about this company before this, I had only heard about ATOS and the things I had heard about ATOS were not good so I was bracing for a fight.

We then had a letter dated the 19th of June from Capita to say that they had been handed Husband’s claim from the DWP……and that was what we heard for a long time. I read and reread the letter to check just in case if we were supposed to have done something, but no. I sent an email to Capita just to query where they were at in terms of assessing Husband’s claim on the 17th of August. I don’t mind waiting as claims are backdated but found it odd that we hadn’t heard anything at all in such a long time.

On the morning we were flying to Norway on the 21st of August we had a letter to say they had to do a face-to-face assessment of Husband and that this would take place in our home on Monday the 4th of September. The letter asked us to ensure we had two kinds of documents ready when the person arrived to assess Husband to prove his identity.

We then had a letter a week before reminding us that Husband had the appointment and where it would take place. Husband also had a text from the DWP to remind him of his appointment. I will ring Husband’s sister today and ask her about some hints and tips regarding the assessment as their son was awarded PIP once he had a formal diagnosis of Asperger’s, and what we can expect from the assessment. Fingers crossed for Monday.