All posts by Sensory Seeker

Hair: Sensory Issues with Washing, Cutting and Brushing

January 24, 2018Diet, Health & Hygieneautism, brushing, cutting, hair, Sensory, washingSensory Seeker

Those with Sensory difference can have problems when it comes to touch, this can be really uncomfortable and sometimes very painful causing the individual to have a “meltdown.” In some situations this really cannot be avoided completely especially when it comes to taking care of their hygiene including their hair. Washing, brushing and cutting the hair can be a traumatic experience for the individual with Sensory Processing Disorder – so what can be done to help?

Consider how Washing, Brushing and Cutting Affects them as an Individual

It is important to remember that with Sensory Processing Disorder (or Sensory difficulties for a person who has Autism) that everyone is an individual and will be affected differently – there’s not a one size fits all. You need to think about what it is that is causing them not to want their hair washed, cut or brushed – what is it about it making them feel distressed? If you can talk to them try to find out but if not you will just have to try different methods to eliminate the possible causes. For example, I know my oldest son with Asperger’s syndrome dislikes his hair being cut so much that he lets it grow for example, whereas I feel like pulling my hair out of the socket (and do often cut quite a bit off myself – this is called trichtomania and can be a sign of anxiety) because it just hurts so much. Remember that problems could be due to any of the senses so think about the situation in terms of them all:

Tactile(touch)
The Auditory Sense(Hearing),
TheVisual Sense (vision/seeing),
Proprioception(Sense of body position, from information received through the muscles, and joints – force, speed and control).
Vestibular Sense– Movement and Balance/Gravity
Gustatory (taste)
Olfactory (smell)

The Environment where having their hair Washed, Brushed or Cut

Like most things when it comes to Sensory Processing the environment the individual is in can make such a difference. Consider the effect of noise, visuals, smells etc on them as well as what the textures are around them and how they are placed (for consideration on proprioception and vestibular senses). Make sure they are familiar with where they are having their hair done and are happy with it before attempting doing anything to the hair. Are they happier standing, sitting – or possibly even lying!? What have they got to look at? Are they content with just what is in the environment or would they benefit from being distracted by a television, games console, iPad, etc? Or maybe it is too much and they need sunglasses or to relax with an eye patch to lessen the visual overload. Is the lighting right? Would they benefit from coloured lights – or more or less lighting? Is there too much noise? Can they wear noise-reducing headphones to cancel it out? Or not enough noise? Could they have a radio on, or listen to music through some headphones? Is it the smell – is there a certain air freshener or products being used that they do not like?You may need to slowly build up their compliance with going into this room (for example in a hairdressers); start by letting them go in and leave straight away, building up their tolerance for staying there. Take a look at different places and see which is the most suitable – some have cars children can sit in, or you may find a hairdresser who is very patient. When our oldest son with Asperger’s syndrome was small we found a hairdressers who would let him come back over a number of visits because he got so distressed trying to do it in one sitting. Also try to take with you things that will help them feel relaxed. Alternatively see if someone will come out to your home.

Things to consider to help the Individual with Sensory Processing when having their hair Brushed, Washed, or Cut

Wherever it is that the individual with Sensory Processing has their hair done there are some things that may be worth trying to think about whether they will make it easier for them:

Can they have advance warnings – with visual aids, social stories, videos, or watching others first? Do they know how long it will take? Have they a visual timer to help with this? As above can they have it done over several sittings?
Can they be distracted whilst someone is doing their hair (with a fidget toy, stress ball, iPad, etc)? Do they prefer to be in control and do it themselves (washing and brushing) – and would they benefit from a mirror (this may also be helpful if someone else is doing it too)? Or is it impossible and therefore would trying to do it whilst they sleep be a last resort option?
Are they comfortable with the feel of a towel/shawl around their shoulders whilst having their hair done? Or would they benefit from a weighted lap-pad or a kick-band around the bottom of the chair whilst they have to sit?
Is the temperature of the water right? Are you trying to wash their hair forwards or backwards over a sink? Using a shower head or lying in a bath? Is a water spray bottle an option – or is the feel on their face unpleasant?
Obviously ideally when trying to brush the hair then clean hair is going to be easier, but this is not always possible. Is using dry shampoo possible? Consider the smells of the products and whether to use shampoo, conditioner or both. It may be a good idea to use leave in conditioner, Aragon oil, coconut oil, or detangler spray to make the hair easier to brush, and comb from the bottom in small sections, slowly going up to the roots. Afterwards consider tying the hair back and if possible plaiting it to avoid any further knots.
Different people will touch the hair/have a different pressure than others, as will different brushes and combs – can this be adjusted to try to find the right force for them? I know my teenager likes the feel of the nitty gritty comb and will only use that – so really experiment! Of course there’s a range of soft and hard brushes, combs with different spaces between the teeth and detangler brushes.
Do they dislike noises – so would prefer scissors over clippers? Or are they worried that their ears may be nipped? Do they need a warning when it will be noisy? And is it better to towel dry or use a hairdryer?
When cutting their hair consider swaddling. Our son was physically sick when the lose hair touched his skin and so a change of clothes may be a good idea.

Do you have any other problems or solutions when it comes to sensory issues and washing, cutting and brushing hair – please add them in the comments below. I would also love to hear if any of this has been beneficial to you.

Iceland with Aspergers

January 2, 2018Asperger's Syndrome, Personal Postsaspergers, flight, flying, icelandSensory Seeker

When it came to our oldest son’s twenty-first birthday I decided that a life-time experience would be best – and that meant travel. After a lot of thought I decided on a surprise trip to Iceland. Having Asperger’s Syndrome and never have flown before, myself and my husband decided that it would be best if I took him on his own. This also meant there was no distraction from the needs of The Sensory Seeker and that the focus was on the birthday boy.

Asperger’s and a Surprise Trip to Iceland

I think we are fortunate enough that our son has come on such a long way, therefore we did not have to prepare him about the trip far in advance. This isn’t going to be the case for a lot of individuals on the autistic spectrum who do not like surprises or generally changes in their routine. If you are taking someone who needs to be prepared then do find out as much information as you can, and prepare visual aids to help them comprehend it all.

It was actually a sort of surprise up until 3 days before we left (when his brother accidentally blurted it out!). Only a sort of surprise because he knew some details, so that he had some manageable bits – and he guessed the rest. I simply asked him to make sure he had his swimming trunks and winter coat. In fact I am really proud that he worked it out from just those two clues – that and the fact that’s where his friends had been. Slowly other details of my plans were leaked out before the big day – so that he was as prepared as could be and was able to ask any questions he had (in his own way). I could also tell him things – such as about not getting his hair wet in The Blue Lagoon (and he was okay about wearing a swim hat). Again he really surprised me because he had read up and spoke to his friends about this type of thing when he had guessed he was going.

Packing was challenging even though we would only be gone for one whole day. I guess a lot of it is the unexpected – knowing it would be colder, but not really how much. The uncertainty of whether what was being packed would be alright. After a whole of day of trying on combinations of clothes and making piles the decision on what to take (and for which day) was made and the cases were packed. I explained what would happen as regards the airport with particular focus on getting through security. This included making sure he knew what would go in the trays and we had what we could put in one bag to make it easier to take out. Also that he could be called over for further checks – but that these were just random and nothing to worry about. We flew Business Class on the way out and I would say if you can afford it then do it, it made things so much easier: From fast lane check-in and the airport lounge – to how we were treated on-board (although it did make for some awkward social moments such as when we were given white flannels before food). There was a lot of time spent in toilets and I am sure this was anxiety more than anything – and generally just needing to give him more time to be ready before we went anywhere.

View this post on Instagram

A post shared by Joy Gloucestershire UK (@pinkoddy)

I do recommend having things planned at least loosely – and we had a Northern Lights Mystery Tour and a trip to The Blue Lagoon booked. We did not see the Northern Lights (which is why I took him there in the first place) but it was nice to spend some time together and experience such a wonderful place. In hindsight I wish I had booked the meals (we only had breakfast included) but we seem to have managed okay (note Iceland has lots of KFC, Subway and Pizza). We both agreed that right now Iceland isn’t the place for The Sensory Seeker so it is a good job we went alone. Iceland was very dark and cold – with a strong sulphuric smell most of the time.

If you have any questions about a first flight for an adult with Asperger’s Syndrome then do pop them in the comment box below – we may be able to help. Or if you have any tips I am sure other readers will appreciate reading them. There was a special assistance at the airport but we did not take advantage of this service.

Sensory Seeker copes with the Snow

December 18, 2017Personal Postsdevelopment, sensory seeker, SnowSensory Seeker

The Sensory Seeker never fails to amaze me. Even when he has a bad day I can see just how far he has come. The other week we had some snow and this really is a perfect example of this. Although after a little while the sensory overload (and freezing cold conditions) became too much for him (hating everyone and feeling that everyone was against him) he first had some fun!

The Sensory Seeker copes with Snow aged 8

First of all he can follow instructions – it doesn’t seem that long ago that we had to physically put his socks and shoes on, as no matter how many times we gave him the instruction he just couldn’t do it. This was even when he started school – so in the grand scheme of things that wasn’t that long ago. Not only did he get himself dressed (picking out his own clothes) and out his socks and shoes on – but he was also able to listen to the fact that he also needed to put his coat, hat scarf and gloves on!

Next the sensory seeker was able to play in the snow. He made snowballs, helped build a snowman and of course got down in the snow and made snow angels. This was more to do with just actually playing (and with his family not isolated) rather than just touching the snow and covering himself in it. He even kept his gloves on (when told) whereas before he would have had to have touched the snow with his bare hands. This I believe also helped him stay out in the snow for a longer period of time.

Plus the fact that he was well enough to play outside – he used to always be in and out of hospital with his bad chest. Every time it got slightly cold he would be back on antibiotics.

Unfortunately it did suddenly make him really upset and spoiled all his enjoyment. It is a shame really that it doesn’t snow more often because I think a part of it is that it is out of routine. For The Sensory Seeker that day he decided that he hated the snow and was glad it didn’t happen often. Not even a special hot chocolate with marshmallows could make him feel better. But before the sensory meltdown I saw him having fun. I am so proud of the progress he has made and I hope that one day he can enjoy the snow as much as the rest of us (in my family) do.

Mandatory Reconsideration Outcome for PIP

December 17, 2017Financial help, Personal Postsaspergers, disability benefit, PIPSensory Seeker

I guess that I should not be surprised but the mandatory reconsideration arrived and they had still scored my son zero points. First off I hate the way they write it as if HE has been able to communicate all this stuff to them, when actually I have written it for him by me! The next is the continued lack of respect for his struggles as an adult on the autistic spectrum and the fact that they seem to suggest that only physical disabilities count. So then the next step is to decide whether we will take it to tribunal.

The DWP Tribunal for Personal Independence Payment (PIP)

You have to give it to them that the way they have worded the letter it really makes it feel like there is absolutely no point in going to tribunal. Not only does the mandatory reconsideration keep going over the same things again (like saying what a wonderful rapport my son had with the interviewer – communicating with no problems whatsoever – when actually I spoke for him a lot, he had a panic attack and ended up with his head between his legs trying to breath!) but at no point does it explain what a tribunal is? Why it is any different to what has happened already – just telling you that you only have a month and a website link to visit (www.gov.uk/appeal-benefit.) There are 2 copies of the mandatory consideration notice as one is needed to be sent off for the tribunal.

jumbled up and backwards neon words that make no sense — Photo by Alisa Mulder on Unsplash

Reasons my son scored zero points in his Mandatory Reconsideration

Even at the face consultation the guy asking the questions said that he had a nephew with severe autism. Straight away my son felt compared – and it does feel that is the case. It is very much a case of just get on with it there are people much worse off than you. To be quite honest I would accept that if they did not score him as zero and say that he does not have the problems he has. If they acknowledged them but said unfortunately this benefit isn’t for them I would give up. They have made me feel like giving up with their reply and let’s be honest Christmas time isn’t the ideal period to be dealing with it all.

No problems physically speaking.
- Because my son knows how to speak any problems associated with struggling to communicate have been ignored. Cognitively he should just talk. Feels a bit like they are saying that he should be grateful he is able to communicate and should just get on with it. HOW we are meant to argue against this?! As this is their line of criteria – as far as they are concerned they have evidence that communication is “adequate!” Plus they said he made eye contact – if only communication were that easy!
No physical problems eating.
- Again physically and cognitively my son is able to prepare food (from the tests where he was asked what day of the week it was etc). The fact that he needs prompting, reminding and ideally supervising (to make sure he doesn’t get burnt/eat out of date/raw food etc) does not count when using their criteria.
No input from a psychologist or mental health team and is not on medication.
- No quite he was getting by with just a specialist mentor (who also doesn’t count). Services are hard to get with so many cuts – but I am sure after this ordeal he will need to seek out this support! And unless you are seeing someone/taking tablets then Autistic Spectrum Condition obviously doesn’t affect your daily life (at all as he was scored zero on everything). The likelihood of him getting to see any psychologist or someone from the mental health team within the time period I should imagine is very slim (I guess unless he tries to commit suicide!!!!) and I am not really sure where I go to access such support for him in the first place! To be honest maybe they have done us a favour because we have just been getting by – maybe it is time we asked for help again.

Thank you everyone for your support in our journey so far.

Websites to help with a Personal Independence Payment Tribunal:

Other Posts of Interest:

Christmas Gifts: A Guide for those with Autistic Spectrum Condition

December 7, 2017Asperger's Syndrome, Christmasaspergers, autism, Autistic, Autistic Spectrum Condition, Christmas, Christmas Gifts, gifts, presentsSensory Seeker

When it comes to buying Christmas Gifts for those with Autistic Spectrum Condition I think that what it is easy to forget that the recipient still likes the same presents as other people. What may be different is that they may be a little more restricted in their likes and dislikes. It is important to remember that everyone is an individual, and this is definitely the case for those with Autistic Spectrum Condition. Although there are some things that seems to have a common element to them; with that in mind I asked some British Women with Asperger’s Syndrome for their thoughts on Christmas Gifts. Note that most of this will also apply to those with Sensory Processing Disorder but it was a bit of a mouthful putting both each time.

Buying Christmas Gifts for Indivudals with Autistic Spectrum Condition

I think it is important to remember that just because you like certain Christmas Gifts then this does not mean that someone else will too. Some of the women with Asperger’s Syndrome expressed how actually they really would rather not have any Christmas gifts at all, than the wrong ones. That mountains of Christmas gifts can be overwhelming – especially for those who are sensory avoiders – with all that colour being be too much! Some even prefer no gifts at all, not wanting their space to be filled with something they do not want or need. Not wanting to waste money for the sake of it. Instead why not club together with other members to buy one perfect present. However, something small and appropriate is better than spending lots of money for the sake of it. Something homemade/handmade is a nice idea or what about an experience or day out – even better still accompany them on it to help reduce any anxiety.

The Christmas Gift of Alone Time

Sometimes those with Autistic Spectrum Condition may find the best Christmas Gift is that of some alone time. This may be just to shut off from the world, to cope with a meltdown, or to relax, for example. This could be a place to hide (like a tent), or a trip away to a spa/night away, or even just back to some bath products for them to find some peace. Again how you decide on the perfect time alone will depend on the individual’s needs. Personally I need to sleep to cope with the changes that Christmas brings, it is what helps me to reset – and therefore some nice new pjs are perfect for this! (with the right textures of course, I hate those hot fluffy tops!)

Giving the Wrong Christmas Gift to the Individual with Autistic Spectrum Condition

Giving someone with autistic spectrum condition the wrong Christmas gift can be even more stressful than not getting them a present at all. They may feel that they have to pretend to like it or be called ungrateful for not being happy with the givers choice. This may ruin their Christmas as they try to hold it in until they end up having a meltdown about it. That is if it doesn’t eat away at them for months because they want to be grateful and are thrilled someone has put so much thought into it- but they really don’t like it! Often generic gifts are unwelcome and they may then hate how unwanted Christmas gifts clutter up their home. This can leave them feeling really anxious about what they are supposed to do with them and find it hard to get rid of. This could especially be the case if the gift is useful but they just have too many of them (like socks!). Again presents that interfere with their Sensory needs will be unwelcome even if well meaning – such as smells they have not chosen (shampoos, perfumes, candles, etc); foods (which may be too rich, or not spicy enough); make-up (which may not have the right texture) and jewellery (again the touch and visual being not to their liking).

Christmas Gifts Guide for Someone with Autistic Spectrum Condition

Christmas Gifts Based on Special Interests

The individual with Autistic Spectrum Condition often has special interests which will make it easier in finding Christmas gifts that they will like. It may be clear what their special interest is and then you just need to ask yourself whether they already have said item related to that gift – and if so would they like another! Books about their main interest is often an item to avoid because if they wanted it then they would most likely have already read it. It may be hard to get the individual with Autistic Spectrum Condition to wait for Christmas to receive something because they may just want something when it is available (I struggle with this particular with my oldest son with Asperger’s Syndrome and his special interest of computer games, which are released around a month before Christmas!). If they don’t want a duplicate item then make it easy for them to return it with a gift receipt – which will also help make it clear that you won’t be offended if it isn’t what they wanted.

Don’t get hung up about age-appropriateness of the gifts either – if they still like Thomas the tank engine in their teens then why try to dictate that they have something else? It’s about developmental appropriateness and where that individual is at. Surely Christmas is a time for happiness. Again consider whether such an item is suitable for their sensory, verbal, gross and fine motor levels of development. For example, it does not matter how old someone is, if they are still putting everything in their mouths then small pieces of LEGO are not ideal, nor are they any good for someone without good fine motor control (although they could help with developing it). Board games may be too complex cognitively for their age even though they state that they should be able to play it – but then can it be adapted. . If it is a child that you are buying for then it is easy to check with their parents.

You may be interested in my Christmas Gift Guide for Pokemon Fans and LEGO Christmas Gift inspiration.

Clothes as Christmas Gifts for those with Autistic Spectrum Condition

Clothes can be a really complex area when considering buying Christmas gifts for someone with Sensory Processing Disorder and/or Autistic Spectrum Condition. This may be due to knowing exactly their needs – are they are sensory seeker or sensory avoider? Do they like a tight or lose fight? What is the feel of the material like? How does the visual of the item make them feel? Where are the seams and labels? Is it soft or scratchy? How much of the skin do they touch? Do they have problems with the fit (too tall/too short)? Clothes as Christmas Gifts could annoy some people with Autistic Spectrum Condition, seeing it as rude and assumptions to determine what someone else should wear, whereas someone else might love to get right the right piece (such as some over the knee socks!) – so it is really important to think about their individual likes).

I remember my mom being surprised when I HATED the leggings she bought me with the gold spots on because I LOVED the top that was exactly the same – but to me it wasn’t and it made me feel ill. Likewise now I cannot find a pair of jeans I like for love nor money (they have changed the design and they are really tight on my legs), and I have worn jeans for as long as I can remember! I don’t like change and that is the same when it comes to clothes. I also like clothes that are practical – big pockets, zip pockets so I do not have to carry a bag with me. Plus I hate long sleeves as I get hot easily.

Practical and Sensory Christmas Gifts for those with Autistic Spectrum Condition

As I said I love things that are practical – anything that makes my life easier. That said there’s a thin line between a thoughtful useful gift and me being insulted (I would go mental if anyone bought me the pots and pans we need as it is like it is implying I should be cooking, rather than being something for me personally). You need to once again think about the individual person, especially if they have sensory needs.For example I really do like expensive shampoo, conditioner and body washes as they are things that I use anyway but have a touch more luxury (as long as they smell okay, as the wrong smells can make me feel sick). This seemed to be common with the other ladies on the Autistic Spectrum who enjoyed getting toiletries IF they were the right ones – don’t assume and buy the wrong ones. Lush products seem to be popular with their glittery colourful bath bombs, particularly as so many of the ladies with Asperger’s Syndrome found the shop hard to navigate with the overpowering of too many smells and colours, and pushy shop assistants wanting to speak to them. Again remember this will not apply to every individual with Autistic Spectrum Condition.

Of course Sensory Christmas Gifts may be very welcome offerings for those with Sensory Processing Disorder and/or Autistic Spectrum Condition and could help improve their lives. Sensory enriching products include pretty lights (fairy, ones for the bath, lighting up the ceiling and walls, colour changing objects, projectors and salt/lava lamps); things with nice textures (pillows, teddy bears); a bubble machine; art equipment (visually pleasing and allowing the individual to be creative); a range of fiddle toys and noise cancelling headphones (although I just have wireless headphones and I play music through them and this works well for myself).

For children with Sensory Processing Disorder and/or Autistic Spectrum Condition some practical things that they may love (dependent on age and ability) are a trampoline, bicycle/scooter, LEGO and board games – as the former are great for getting them moving (beneficial to both sensory seekers and sensory avoiders); and the latter develops fine motor skills, patience, following instructions and even turn taking.

Getting it Right when Buying Christmas Gifts for Someone with Autistic Spectrum Condition

The biggest suggestion given for buying Christmas gifts for Someone with Sensory Processing Disorder and/or Autistic Spectrum Condition is to just ask what they like instead of assuming that they are all a hive-mind who like the same things. Many people on the Autistic Spectrum like routine and therefore changes are not welcome, so do not obsess that presents must always be surprise. Maybe have a traditional gift, that you know they like, and can give every year. Something practical like a calendar maybe (of their special interest). But then do bear in mind that if they suddenly do not receive it then this can also cause some issues.

Another idea is to look at their wish list, that way there is still an element of surprise but in a controlled way that means they will still receive something they like. This can be done either by creating an online wishlist (like on Amazon) or they could print off specific pictures of Christmas Gifts they want. Those with Autistic Spectrum Condition may be aware that they are difficult to buy for and therefore would not be offended if you decided to play it safe with a gift card; as long as you do not get it wrong. Does anyone like being told what to do or where to shop? So make sure you know that they would appreciate a specific store to spend their gift card at. Clothes shops (see above) are usually not a good idea. Instead why not buy Gift Cards which can be used at many different places/buy a variety of things – such as Amazon gift cards or Love 2 Shop Vouchers. But do not be afraid to give money especially if it what they have asked for – as this may anger them, especially if they are trying to save up for something. Alternatively you could use a pre-paid debit card.

Opening the Christmas Gifts with Individuals with Autistic Spectrum Condition

Those with Autistic Spectrum Condition may feel uncomfortable being watched opening their Christmas Gifts. This is because people with autistic spectrum condition may struggle with emotions – including hiding their own. It might not even be anything to do with the gift itself but, as mentioned, many do not like surprises. Or it could be a case of their expression not matching what they would like to communicate. The anxiety of the “wrong present-face” may make them not want to open their presents at all. An example I was given was someone who was opening a perfectly lovely present got sticky-tape under their nail and pulled a, “ewww gross horrible!” face and was scolded for it.

Thank you to all the ladies with Asperger’s Syndrome who helped me to compile this article. If you have any further insights I would love to hear them. And a Merry Christmas to you all.

Related Posts of Interest:

Personal Independence Payment Reasons for Saying No to Asperger’s Syndrome

November 24, 2017Asperger's Syndrome, Financial helpdepartment of work and pensions, disability benefits, dwp, Personal Independence Payment, PIPSensory Seeker

Personal Independence Payment the ironic process where people with Asperger’s Syndrome need to be able to communicate their difficulties with communication. I am sure this new disability benefit has affected so many people in so many ways. If you have been following the journey so far then you will know that my son with Asperger’s Syndrome was asked to switch from DLA to PIP; that he has already had the PIP Face-to-Face Consultation and been told that he does not qualify for Personal Independence Payment. I have since sent in a request for a mandatory reconsideration and had asked for the request copies of the evidence that they used to make the decision. I have now received that evidence and have a further 2 weeks to add anything else or I can ask them to just go ahead and make a decision. This is what I have gleaned from the evidence that they made their decision on.

To represent the Personal Independence Interview around computer with two people sitting opposite one other — Photo by Štefan Štefančík on Unsplash

The Decision for not Granting Personal Independence Payment for my son with Asperger’s Syndrome

The first thing I would say is not to wait until you receive the decision but to ask for the notes straight away (I was advised over this but naively felt confident that he would be awarded standard rate). Secondly personally I feel that I am fighting a losing battle as the assessors clearly have no knowledge of Autistic Spectrum Condition and are basically applying that most young people don’t eat/wash/deal with finances etc – and I am just a parent that is worried and will not let go!

How to turn up to a personal independence interview ragged clothes and a walking stick — Photo by Chelsea Aaron on Unsplash

The physical seems to be a tick box too – he can physically talk, walk, wash, cook etc – anything mentally seems to be ignored: This is because it means it is deemed not significant enough: Examples are that he is not taking any medication to help with his mental health or anxiety; and does not have a guide person with him 24:7 helping him with social, communication and interaction – and never has.

The decision is made on their own assumptions: In fact the report basically says that because there is no-one helping him it suggests that the majority of the time he is indeed having no problems with social and communication. The fact that the food is not fresh/nutritious is “not considered within the scope of this activity.” Basically that cognitively he is capable of cooking. Basically they have decided on their answer and then just copied and pasted this for each section – with some having a little more twist towards the question but not all.

Evidence for Personal Independence Payment

Basically it boils down to proving it by the looks of things. No matter what it says about whether you need help but don’t get it or not that’s rubbish. My son was not awarded it based on not having hard evidence: The only evidence they used was from the PIP Questionnaire. Unlike Disability Living Allowance they did not attempt to contact anyone to confirm my son’s difficulties from a professional point. This whole thing has adjusted my view on whether people should fight and now my answer is always yes – as you never know what is around the corner. Unsure about needing a diagnosis? Fight for one anyway. Do not think they can get an EHCP (Education Health Plan)? Fight for one anyway. NEVER let it go, because whilst you/your child may be coping right now it will be used as evidence against you later on if you didn’t try to get it!

man and woman talking over a computer screen — Photo by rawpixel.com on Unsplash

As he was unable to communicate his daily struggles and how often affects him, it went against him – but not enough to suggest that he has difficulty talking to others and expressing himself! Anything I added as his appointee was belittled and I was only referred to as his “mum.” We were not asked about the variability, triggers or treatment during the face to face consultant but they were all put as none – obviously when asked at the start you need to make these clear!

Tips for a Face to Face Consultancy Meeting for Personal Independence Plan for Autistic Spectrum Disorder

Make it clear not only what the symptoms are of the condition but what is the variability, the triggers and any treatments.
- Make sure this is communicated well, whilst not being seen to be able to communicate.
Do not have your mother as an appointee as she will just be referred to as Mum – and we know how fussy they are!
Take tablets.
Don’t follow instructions to where you need to go.
Be underweight.
Be unclean.
Be ungroomed.
Give no eye contact.
Struggle to breath.
Be badly dressed.
Struggle to walk – it has no relevance to your Autistic Spectrum Condition but it is mentioned so many times on the form so MUST be important.
Photo by Ian Espinosa on Unsplash

All joking aside, I tried not to judge the guy who came in who did smell, “struggled” with his cane etc – and it was hard not to think why isn’t someone really looking after this person if things are really this bad?! He had someone with him too so not like he was just alone.

On the other hand this process has made me feel like a fraud. A scrounger trying to get money for a young man who it appears to be more than capable of living independently when there are so many others out there who aren’t. It makes me feel like he just has to try – that we are obviously doing something wrong. That I am just neurotic worrying, and fighting for support to ensure he eats, washes and has help with communication. I am not even sure it is worth trying to fight any more – never mind putting him through a tribunal.

I would be interested to know what kinds of support people who have been successful at Tribunal do receive/need to Gage whether it is worth the fight.

Thankfully Student Finance England do not agree with this decision and have awarded him his Disability Support Assist and so IS able to access help he needs to live more independently.

This Guide may be of use to anyone going through the process too: http://www.advicenow.org.uk/guides/how-win-pip-appeal

Personal Independence Payment: Asperger’s Syndrome Decision

November 13, 2017Asperger's Syndrome, Personal PostsMandatory Reconsideration, Personal Independence Payment, PIPSensory Seeker

Bastards!

paper square angry face,held up in front of a brick wall — Photo by Andre Hunter on Unsplash

Excuse my language but that was my reaction to the decision to end my son’s Disability Living Allowance just before Christmas, on the grounds that he has not been awarded Personal Independence Payment. After being put through that hideous PIP Interview they have made the decision that he has scored zero points.

Understanding why they said No to Personal Independence Payment for Asperger’s Syndrome

I understand why they said no to Personal Independence Payment for Asperger’s Syndrome as I am aware that our son is doing incredibly well living away from home. That there was the chance he would not be awarded PIP, as even in the interview it was said that he would be on the border of whether he would get it or not. This had shocked me as I felt sure he met the criteria for at least 12 points, which would entitle him to enhanced, but I had got my head around the fact that there’s others much worse off than him and maybe it is just because he is doing so well. After all, he has managed to move out, and with support is coping incredibly well (trying not to dwell on how much he isn’t looking after himself and could be in danger).

sink full of dirty pans — Photo by Scott Umstattd on Unsplash

I can understand how the Department for Work and Pensions don’t get that he isn’t really washing himself properly (or regularly) and choosing the right clothes – and that I am letting him live like that to help him get more independent. Taking a chance on the letting go – and fearing that he’s not being taken care of, and is putting himself in danger (and honestly I don’t NEED to hear that MOST teenagers are like this either!). I do, I get that. I mean it is hard enough for me to get my head around without them having to struggle: Knowing that there’s just support at the University and a Specialist Mentor that he sees once a week (at a cost of £60 an hour via his Disability Support Assist from the Student Finance England). Yes he isn’t receiving any more support and it is hard for them to see that just because he isn’t getting something doesn’t mean he doesn’t need it. Obviously otherwise I would have fought harder to get him the care he needs – right?

Not Understanding why they said No to Personal Independence Payment with Asperger’s Syndrome

But the fact that he scored zero points on every aspect of the form – not even we recognise that his Asperger’s Syndrome affects his life but maybe not enough for payment – I really cannot understand though. It is like they have the ability to completely cure him of his Asperger’s Syndrome. Making me feel like a fraud for ever claiming for him in the first place. Saying that he has absolutely no problems with social and communication! Are you kidding me! Even though at his face to face consultation they saw it! Even though it took until he was 10 years old to be diagnosed (he was first assessed at aged 2) – after at least a year of professional bodies observing and assessing him before a diagnosis was made! But this interviewer, the one with the family member on the Autistic Spectrum, he is in the know. And my son is just fine – now if only I could believe the DWP as much as they believe themselves! I mean I don’t know what all those Speech and Language Therapist thought they knew – but they are completely wrong. And those struggles he has – well he’s obviously just playing me and being lazy!

Mandatory Reconsideration for Personal Independence Payment

mother comforting upset child — Photo by Jordan Whitt on Unsplash

My son was so upset when I told him the result, and I have promised I will appeal (starting with a request for a Mandatory Reconsideration for Personal Independence Payment). But I don’t think it will do any good – they have made their minds up – he’s okay. It doesn’t matter that he doesn’t eat and needs reminding because when pushed he said he can reheat a pizza and waffles in the oven; honestly what more nutritious meal could anyone want. So many factors ignored. My emotions all over the place; as strong as I try to be I go back to worrying that I am just doing it all wrong. They brought up the lack of support at school, and they just said it was rubbish parenting. Maybe I shouldn’t be so angry at the decision, and just be grateful that they are right?!

Read more on why the DWP made their decision to say no

Autistic Spectrum – 10 Things You Should Know

October 22, 2017Asperger's SyndromeAutistic Spectrum, autistic spectrum disorderSensory Seeker

As someone who has experience of the Autistic Spectrum there are some things I wish you to know. I think it would be useful as a society as a whole if we were all more educated and understanding. I myself wish I knew when I first started to consider whether my son was on the Autistic Spectrum; as I remember there were some stereotypical hurdles that I had to overcome. For instance I thought that those on the spectrum could not lie, that they were honest to a fault. I am not even sure if my son knew he was lying or if in his mind it was the truth but he definitely did not tell as it was. I still remember my husband filming him swigging a toy dog around, and even when showing him the video he denied doing it! Another thing was he was taught how to give some sort of eye-contact (so again I wrongly assumed he could not be on the Autistic Spectrum). So here are ten things as a parent with a child on the autistic spectrum, and suspected Asperger’ syndrome myself that I would like you to know:

10 Things I wish you knew about the Autistic Spectrum

Autism is for life – causing difficulty in the areas of social interaction, communication and the senses. This can be accompanied by repetitive and restricted interests, activities/behaviours, and problems with executive function.
Those on the Autistic Spectrum may interpret the world differently to others – including not “just knowing” things that are socially acceptable or being able to read body language.
Image from Unsplash
People on the Autistic Spectrum are just that people. They may behave in a way that makes some people feel uncomfortable but they do not mean to; and do have feelings too. They may not be great with social relationships but that does not mean that they do not crave them (some may not) and still require love and understanding.
Autism is on a spectrum – and each and every individual is different in how autism touches their lives. But then again no two person are the same anyway – those with Autism are no different to that. Just because person X does not act the same as person Y who you know on the autistic spectrum doesn’t mean that person X is lying about being on the autistic spectrum.
Image Unsplash
Talking of which there is no right way of talking about Autism in relation to people – some prefer if you say person with autism and others prefer autistic person; I think as long as you are not being unkind/using it as a put down it really does not matter in the grand scheme of things (particular as communication/social relationships is an area that they struggle in any way!)
People on the Autism Specrtrum are not all gifted at something. Some people are, but again so are some non-autistic people. Again everyone is a gift whatever their capabilities, with or without autism. Although how their condition makes their daily life more difficult, and getting through it, is surely a gift in itself.
Photo from Unsplash
Try to be accepting. You may not understand why that individual in the supermarket is flapping/making noises/chewing, etc but either way try not to judge. Think maybe about why they are doing these things – how hard it is for them to cope at that minute.
Autism can happen in both males and females – it just might present itself differently.
Image from Unsplash
Autism is an invisible disability. Some people struggle into their adult lives before they even discover that they are on the autistic spectrum. Just because you can’t see how difficult things can be doesn’t mean that they are easy.
There is no cure for Autism – and neither should there be. Understanding and acceptance is what is needed – autism does not make a person bad, judging them and treating people badly does though.

Do you agree with these 10 things? Is there anything you would have added?

Claiming PIP with Aspergers Syndrome

October 20, 2017Asperger's Syndrome, Financial help, Personal Postsbenefits, interview, PIPSensory Seeker

Moving from Disability Living Allowance (DLA) on to Personal Independence Payment (PIP) was always going to be a difficult time – for one we (my son and I) struggle with change. But with the horror stories added in to the mix with the uncertainty it wasn’t something we were looking forward to. In fact if it were just about the money I wouldn’t have bothered, but I believe it helps him have access to DSA (Disability Support Assist) at University.

Letter asking to move from DLA to PIP

First of all the letter came about the switch earlier than I was expecting. I thought it would be when my son’s DLA ran out that he had to apply – so it was a bit of a shock that it came 3-4 months earlier. I then had to make a phone call (and let’s be honest who likes making those, but especially not people on the autistic spectrum) with very little information about what would be expected during that call. Luckily I am on a few autism forums and was reassured that it would be basic information which could be added to once the form arrived.

The First PIP Phone Call

First of all you need to ring up by a certain date that is on the letter. I wanted to do this as soon as possible so I didn’t forget. In hindsight if you leave it longer then you are going to be paid at the rate you are on now for longer – this is because as long as you do everything by the dates they say then they will continue to pay you up until a decision has been made. They ask for you to verify information that they have on record such as name, address; details of healthcare professionals etc. Anything I didn’t know the answer to they said it was ok I could just add it on the form. I was asked for permission to move over any “evidence” on file from the DLA claim to be moved over to PIP. It was also explained that the PIP form would arrive in the post.

aspergers bullying — Asperger’s can lead to bullying

The PIP Claim Form

Personally I felt that this form was easier to fill in, if not omitting a lot of areas that those with Asperger’s may struggle with (although there is the page at the end where you can add it). The biggest issue for me is that this time it could not be typed up and there wasn’t really a lot of room. It was straight forward in each section with yes/no tick boxes and comment sections to elaborate. There wasn’t lots and lots of repetition about the same thing. Again we had a date by when the form was due by and DLA would continue to be paid as long as the form was back by that date.

Looking at the criteria I felt positive that my son with Aspergers Syndrome would be easily entitled to enhanced care and not at all on mobility. Basically because I felt that they had moved his mobility needs over to the care section (as he is physically able to move it is the help he needs mentally with this). I thought there was evidence enough for him to tick the boxes to get those 12 points and that he would be okay. In fact, somehow I had even convinced myself that he wouldn’t need an interview. Filling in the form made me physically sick though. I hate having to write them out, think of how he is struggling, and especially his bad days. On doing the form and talking to his support mentor I realised that he wasn’t actually doing as well as I thought he was. The biggest problem for us is that the lady who is helping him wouldn’t be able to help any more without the right funding. I am really anxious that if he does not receive PIP this will fall away completely and the University will not be able to help him. I felt reassured though that PIP is meant to be for help that is required – whether you receive it or not. For example, you are meant to be able to make meals from fresh (including reminding and supervising) – the fact that my son eats, but not properly should not be an issue.

coffee — As I feared a lot of what his problems are were put down to “student life”
Photo Credit: Annie Spratt

The PIP Interview

I should have known from the fact the envelope was white (and not brown) that a decision had not been made but I was still shocked at the invitation to attend an interview. It was rather short notice and at 9am in the morning. This meant I had to get my son back from University and sort childcare for my other children. All this was sorted though and then the real realisation set in that the things on the form would have to be discussed in front of my son with Aspergers.

My son lives in a bubble and, although he realises that he struggles with communication with others, there are just some things that he does not understand that he does because of his Aspergers. I went through the form and the different areas with him – and in his own words it made him feel shit. I had to reassure of him of how well he is doing, and how proud of his progress we are. I had to, in the gentlest of terms, explain how Aspergers could make him egocentric, and what that meant: I told him that it didn’t make him a bad person, but that this could sometimes annoy others. I am sure you can think of many other scenarios where my son is unaware of his condition but they are far too personal to blog about. Let’s say the whole thing has made me feel like a rubbish parent because I should be supporting him and not letting him struggle. The thing is, and I believe it is true, that we HAVE to let him be independent and little by little he is managing and it is amazing. I do appreciate others are worse off and can never be in this position, it just feels like people are penalised (with support taken away) when they try to help themselves (instead of it going when they are more able to deal without it – again this is not about the money but the doors it opens to support for him).

The PIP interview itself started badly as I had completely forgotten that we both needed to bring two forms of ID. Luckily a bank card and driving licence was fine – and we both had these (although the fact my son had both of these probably went against him – as it showed that he could drive, even though he doesn’t because of the unfamiliar area he now lives in, and apparently having a bit of his money and a bank account demonstrates he is fine with finances – that and simple maths questions he was asked!). In the waiting room my son went really light-headed and his anxiety was through the roof. They had a water dispenser and I was able to get him 2 cups before we went in (nothing like being punctual!) – this also meant that he had a cup to fidget with.

The guy that took the interview straight away let us be aware that he knew about autism and had a family member with severe autism. This was a double-sided coin as he was able to really engage with my son, keeping language simple and was able to extract answers from him (and how to help him when he got really anxious); but on the other hand this meant he could not say that my son had any communication issues! Everything was explained well in simple terms and we were told that the interview would give us his opinion at the end – so it was all transparent. Personally I felt that a lot of the questions were leading or that the interviewer would suggest to my son how he should answer (like, “I am sure a bright lad like yourself doesn’t, but do you ever need anyone to simplify language for you?” – even though I had had to explain the do you take medication question to him!). Again no idioms etc, or other no simple language was used, and the fact that my son struggled with communication seemed to go down as just “anxiety.” None of the paperwork used in his DLA claim had been sent over for PIP but I was told there wasn’t any point in sending it now. This meant that they did not even so much as have a diagnosis for his Asperger’s syndrome but he took my word for it and asked who diagnosed him. I feel that the interview is totally not suitable for a condition of this nature – for one those who have a communication disorder feels unfair that they don’t seemingly say the right thing (I could go on and on about this but for example, when asked how often he showered the interviewer demanded an answer so he just made one up because he felt he had to say something!)and how my son was made to feel (not the interviewer’s fault but the nature of the interview) was surely a human rights issue. I am really not happy.

The PIP Interview Verdict

We do not know the actually results of the interview as it has to be sent off and scored but the guy doing the interview told us what he thought and would be putting his case forward. Basically what he said was that my son was, in his opinion, on the border. That there was no way we could suggest he has communication issues because he went to a main stream school and is now at University with no statement of special educational needs or one-to-one support. That he is able to catch a train (from University to home, one familiar route and would need help if anyone spoke to him, anything went wrong or changed but we shall ignore all that), dress and shower (who cares if the clothing is right or whether the shower is just him getting wet and not clean, and needs prompting to even do that!) living independently (even if he has a mentor and contact with parents for support with this). He did however feel that he has issues when it comes to food and socialising. I guess we just have to see now. It was awful for our son to go through all that and it made him feel really ill. If he does receive standard care I wont fight it (even though I think it should be enhanced) because there is no way I want to put him through any more than he has. Apparently a decision can take around 6-8 weeks – let’s hope it is more the 8 so that he can continue with his DLA until then. Fingers crossed that all this was not for nothing for him.

Do you have any experiences with moving from PIP to DLA?

PIP is a benefit that helps with the extra costs of a long-term health condition or disability for people aged 16 to 64 which is phasing out DLA.

The Sensory Seeker – In the Beginning

October 12, 2017Personal Postsbirth, breastfeeding, infection, jaundice, seeker, Sensory, weight lossSensory Seeker

I am not sure at what point, if there is a point, our son The Sensory Seeker started to have Sensory Processing Disorder. I am not sure if anything caused or triggered it or if it is something that has just always been there. But I thought I would try to share some of his early experiences to see if anyone can identify with it – and just so you can get to know him better.

The Birth of The Sensory Seeker

The Sensory Seeker was born at 35 weeks Gestation with just gas and air using Wrigley’s forceps and a whooping 7lb 1 oz. He was also rather long and I believe that the hospital just thought that the dates were wrong. I had had contractions from around 31 weeks but told to get bed rest. I have a needle phobia so at no point did I have the steroid injections. I was also breast feeding my toddler and once this happened I had to try to really limit his feeds. In fact it was the middle of the night when he came in for a feed that my waters started to break. First a trickle but then there was no doubt as they poured out. We went to the hospital and The Sensory Seeker was born a few short hours later. Born at five thirty in the evening we were both discharged from the hospital the next morning.

The Sensory Seeker’s Weight Loss

At home The Sensory Seeker was feeding fine, but was very sleepy. I had been given no information on him coming before the 37 week full-time dates and felt that something was not right. By day 3 when the midwife came to check that he hadn’t lost more than 10% of his birth 3 he’d actually lost 13% (down to 6lb 3ozs) and we had to go straight back to the hospital. Despite constant badgering to formula feed my son I expressed my milk and fed him by first syringe and then cup – which meant I had very little sleep. We did get sent home at one point but it wasn’t long before the weight gain wasn’t satisfactory enough we were sent back in. He was put on the Billy bed (UV light) and was treated for jaundice. His blood sugar levels weren’t right either but they were the opposite way they were checking for so apparently it was ok, I later learnt that his blood sugar levels were an indication of an infection but everyone was too hung up on the fact that I was tandem feeding.

His weight continued to stay low and his jaundice worsened so they added a top to the billy bed which meant that he had to have his eyes covered. It was really hard not to just be able to cuddle my sick baby too, with the only time I was able to touch him was when he was feeding – this was every 3 hours by cup. He made a tiny bit of progress and was able to move to first a normal cot, and then a side-cot attached to my bed. The whole time I was still expressing, cup feeding and feeding my other son when he came to visit. His bilirubin levels then reached an acceptable level and we were able to go back home.

The Sensory Seeker’s Infection

And then it happened. One day when he was 3 weeks old and I went to change his nappy there was just this awful puss oozing out of his belly!! Luckily there was a clinic running across the road and the midwife saw us straight away who said to take him straight to the hospital. No-one really said anything to me but a cannula was put into my tiny baby’s arm immediately – and he was pumped up with 3 different types of antibiotics. We were sent to another hospital and there he continued the IV antibiotics and returned back to his birth weight at last. His weight has been fine ever since.

I am not sure if these early experiences have been the cause of his sensory issues or whether he would have had them anyway. But I do think it shows that from the off he has always been a fighter. A strong little man.