boy reading to cure sensory processing

We are all on the Sensory Spectrum: The My Plan Review

If you are looking for a perfectly well formed blog post about a My Plan review then you’ve come to the wrong place as I am fuming, and writing this from a VERY emotional place. You see the thing is this is not the first child I have had to fight for and well I got subdued into a false sense of security as his last school was really good – this one is rubbish and so is the SENCO.

boy reading to cure sensory processing
Photo by Ben White on Unsplash

So why I am I so annoyed about the My Plan meeting that myself and my child got invited to – well there really was no point us being there – apart from to talk at us and tell us we are wrong. The Sensory Seeker’s My Plan for this term targets three areas of what he should be achieving for his year group (whether he still needs to be able to accomplish things from previous years is neither here nor there and there was even a comment about worrying about SATs in Year 6!!!). Anyway back to these 3 targets: They all overlap into basically the same thing – reading and understanding, being able to communicate in a way that’s understood and being able to write in a way that’s understood. Each one with a target date that has passed!!!

I was told that the reason for the new deadline (which it wasn’t clear when that was) is because that is what the class are working on currently – so it made sense to move it. I asked what help The Sensory Seeker was getting to reach these goals: Of course the answer is NOTHING. Of course I wasn’t fed that information but instead was told how the whole class are being taught – how it is being explained, modelled, blah, blah, blah; but not a single thing as to how my son, who clearly isn’t getting it, is being helped further. On looking at the sheet it says an adult at home (and at school) will read and ask questions about the reading; that an adult will correct him when he doesn’t speak grammatically correct and that he will say a sentence before writing it out. The latter of which already becomes apparent is a problem as he misses words out when talking (hence the target before about communication).alone at playtime

Then it happens. The incident where The Sensory Seeker missed lunch time play to finish work (because the rest of the class had) is brought up. The TA is proudly showing how much better he did than in the class. So I take breath and DARE to mention again my concerns that his SENSORY PROCESSING DISORDER is being IGNORED!!!!! I do it in a polite way and suggest that there’s a possibility that the classroom was different when everyone is out playing than when full of children. I suggest it may be noisy, more visually distracting – I don’t know I am not there and I am not the SENCO. Of course the first thing that is mentioned is that it ISN’T noisy – even when The Sensory Seeker tells them that it is! And THEN they tell me that ALL kids are distracted! All they did do was joke to my son about wearing headphones (which would have been a good call if they weren’t laughing when they said it, besides WE have tried them and they do not adjust the sound right for him). How I did not just get up and walk out I do not know. If my son hadn’t have been there I may have done. In fact now I wish I had grabbed my son and said this is a waste of time and I am taking him out!!!

So there we have it all my son’s problems will be solved if he just reads more! These Sensory Issues I am just making an issue of because we ALL HAVE THEM! Our other son is on a school trip until the end of half term, I may see if I have calmed down any more by then as to what I wish to do next.

sensory processing issues with clothes

Sensory Processing Issues with Clothes

When it comes to Sensory Issues I guess their clothes is one of the first things that comes to most people’s minds that could be a problem. The thing is when it comes to Sensory Processing Disorder and clothing is there’s a lot more to it than annoying labels and seams in socks.

sensory processing issues with clothes
Photo by Matt Seymour on Unsplash

Sensory Processing Disorder is the inability of the brain to filter out the senses which it does and doesn’t need. This includes touch, taste, smell, hearing, sight, movement and balance plus sense of body position. Each one could be filtered out too much or too little and those with Sensory Processing Issues have to get the right Sensory Diet to help counteract this. When it comes to clothing the individual may be a Sensory Seeker, a Sensory Avoider or fluctuate between the two. It is important with all things related to Sensory Processing Issues that the individual has their needs met. Keep a diary to work out when and how this will be best for them and this will help work out how to deal with day-to-day things like brushing their teeth and hair – and of course getting dressed.

Identifying the Individual who has Sensory Processing Issues with Clothes

Now the individual with Sensory Processing Issues may never want to wear clothes and would be quite happily naked all the time, stripping off at every opportunity or they may like clothes tight against their skin, layering up and not want to take them off. The important thing is listen to them (this may be with actions rather than words) and let them guide you to what are their sensory needs.

Signs to look out for include:

  • Taking their clothes off when they can or hate being naked
  • Wants to be barefoot or never wants to take their shoes off
  • Always tucking their clothes in
  • Not wearing warm clothes in the cold
  • Wearing too many clothes in the heat
  • Keep wearing the same clothes over and over again
  • Picking or sucking their clothes

    sensory issues with clothes bare feet
    Photo by Jan Romero on Unsplash

Buying clothes for those with Sensory Processing Issues

When buying clothes for those with sensory processing issues there are some things to keep in mind to make life easier:

  • Consider shopping for specialist sensory clothing – including seamless socks, weighted jackets and compression clothing.
  • Take the individual with Sensory Processing Issues shopping with you. This means that they can have a say on what they do and do not want.
    • Even if they cannot talk you can gage their reaction to thinks such as the texture of the materials. If they can try them on even better – this not only ensures that the pressure is right for them but also whether they can put the clothing on and off by themselves.
    • With this in mind think about the fastenings – are they buttons, Velcro, laces, zips, poppers or elasticated? And if they hate keeping clothes on will you consider buying fastenings that they can’t undo to prevent them stripping? Is a belt an idea?
    • Let them have the control to choose and if they tell you that the size does not fit (even if it looks perfect) try to accommodate what they say (obviously not if they want trousers so long they are going to trip over them or shoes 4 sizes too small!)
    • How tight are the clothes? Around the ankles. Cuffs, waist and neck for example? Does the individual with sensory issues prefer it tight or lose? This could be the difference between boxers or briefs; sports bra or underwired bra? Do they want the clothes to be able to move around or hug the body?

      sensory processing issues with clothes
      Photo by Senjuti Kundu on Unsplash
    • How much of the body is covered? Do they prefer the air to touch their skin/or are irritating by the feel of clothing and opt for short sleeves and trousers? Is it better for them to have long sleeves/trousers? A dress would mean less of the material touching the body. Buy lots of layers if needs be – with a safe base layer at the bottom of acceptable touch/pressure (including with underwear and socks).
    • How warm are the clothes and what is the weather like? If the individual with Sensory Issues does not like clothes maybe thermal clothing would help to keep them warm whilst wearing less.
    • Consider shopping in second hand shops for the individual with sensory issues with clothes, as they have been washed many times and this can change the texture.

      sensory processing issues with clothes
      Photo on Unsplash
  • When it comes to shoes they may want the sensory input and so laces will help them feel tight and secure. But if they are unable to do up laces then Velcro may be a better option. If they do not like the feel then slip on shoes would be a better choice. Another choice is to consider a brand of barefoot footwear which is the most like not wearing anything on the feet sensory-wise but without the disadvantage of hurting the feet (on broken glass etc).
  • When you find clothing that the Individual with Sensory Issue likes then buy in bulk, including the size they are (for when they are dirty) and bigger sizes (if they are still growing). Consider whether a change of colour will make a difference, but if unsure it is best to stick to exactly the same garment. You may also wish to cut out any labels to avoid irritation.

    Photo by Katya Austin on Unsplash

Other things to Consider for Individuals with Sensory Issues with Clothing

  • Be careful how you wash the clothes – ensuring that the smell is right, and how it may affect the texture (deciding on whether to add fabric conditioner). Again if you use a tumble dryer consider how this will alter the texture and smell – but also be careful not to shrink it too!
  • Pick your battles and set boundaries. Ask yourself whether it really matters whether they are wearing clothes in the house, if they have a jumper on or if their clothes do not match/look silly. Focus on things that you feel do matter and have rules – like answering the front door/sitting at the dinner table having a pants on rule.
  • If the individual with sensory issues does not like wearing clothes then make getting dressed as part of their routine. Utilise dressing-up clothes, especially if they are available in their special interest. Allow them plenty of time and slowly get them to wear clothes for longer and longer. Or the opposite – for taking them off.

Pressure for the Individual with Sensory Issues Prior to getting Dressed/Undressed

As I stated at the start a sensory diet is really important and other things apart from the clothes can have a massive impact on the individual with sensory issues that can affect how they feel about them. The touch on the skin prior to getting dressed (or after getting under-dressed) can change how the individual reacts and may be able to prevent a meltdown. A light-touch can be alerting and deep-pressure is calming. You could try techniques such as brushing and swaddling or rubbing down with lotion.jeans sensory issues clothing

I have been really lucky with The Sensory Seeker and he just likes clothes to be tight and tucked in so I have never had to buy any specialist clothing. Personally I cannot stand long sleeves and tend to live in vest tops and put a jumper on and off as required. As soon as I get home I strip down to whatever is acceptable, starting with my shoes and socks as soon as I walk through the door. If I get too hot and irritated I get to the point where I feel I cannot breath and get very snappy. I have never been diagnosed so would be interested to hear how others feel. I am a practical clothes wearer and you can read about my struggle with jeans lately. I have also got a coat which I love as it has a bit around the waist which pulls it in closer, stopping the cold air getting in. The sleeves also have extra bits to slip my hands into – ironically I like these as I hate things touch my arms – but I don’t like to wear the coat when driving.

If you know of good places to buy clothes for the individual with sensory issues or have any more problems or advice on this issue I would love you to comment below; thank you.

Hair: Sensory Issues with Washing, Cutting and Brushing

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?man having hair shaved

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. man having hair cutRemember that problems could be due to any of the senses so think about the situation in terms of them all:

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?empty hair dressers chair and lightYou 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?mother and children around an ipad
  • 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.open scissors
  • 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.

 

Other Posts of Interest:

Hair Washing & JOHNSON’S Baby Easy-Rinse Foaming Shampoo Review

 

Brushing Teeth & Sensory Processing Disorder

National Autistic Society: Preparing for a visit to the Hairdressers

iceland

Iceland with Aspergers

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.iceland

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.mother and son in the blue lagoon iceland

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.

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.ice cave in iceland

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.

two boys playing together in the snow

Sensory Seeker copes with the Snow

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!boy rolling a giant snowball to make a snowman base

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.two boys playing together in the snow

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.little boy with sensory overload in the snow
Country Kids

brick wall Mandatory Reconsideration Outcome for PIP

Mandatory Reconsideration Outcome for PIP

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.brick wall Mandatory Reconsideration Outcome for PIP

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!Christmas Gift of being alone - woman covering her eyes with a hat
  • 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

Christmas Gifts: A Guide for those with Autistic Spectrum Condition

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.Christmas Gifts

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.Hot chocolate Santa Gifts

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!)Christmas Gift of being alone - woman covering her eyes with a hat

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 bottles of perfume

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.

Christmas Gifts Special Interest Pokemon TopDon’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).

line of pegs - christmas gifts for those with autistic spectrum conditionI 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.

Christmas Gifts LightsOf 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.

Christmas Gifts CalendarAnother 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.Christmas Gifts opening

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:

dirty hands

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

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.

    dirty hands
    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

 

paper square angry face,held up in front of a brick wall

Personal Independence Payment: Asperger’s Syndrome Decision

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!

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

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

autism differences

Autistic Spectrum – 10 Things You Should Know

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

  1. 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.
  2. 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.

    see the world differently
    Image from Unsplash
  3. 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.
  4. 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.

    differences within the autistic spectrum
    Image Unsplash
  5. 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!)
  6. 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.

    autism gifted
    Photo from Unsplash
  7. 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.
  8. Autism can happen in both males and females – it just might present itself differently.

    man and woman
    Image from Unsplash
  9. 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.
  10. 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?