How to approach 5 of the most common difficulties that occur for children on the autism spectrum

How to approach 5 of the most common difficulties that may occur for children on the autism spectrum.

(1) Sleepless nights: Who ever said it was babies that caused you sleepless nights? Whoever you were you lied. Its well documented that children on the autism spectrum have difficulty establishing a bedtime routine, getting to sleep or waking during the small hours.

Now, I don’t have all the answers here, how could I possibly when my child is still awake now at 2.43am! However I have tried things that have had an effect but sadly not for long. Don’t panic every child is different and not every child on the spectrum will have difficulty sleeping. Here’s some tips that have worked for us short term but for others they never stop working.

For those that have difficulty establishing a bedtime routine, consider making a schedule. These can be brought but tend to be costly and can be easy made with some paper, a laminator, some Velcro, brightly coloured pens and some stickers for decorating (I will upload an additional how to post to demonstrate how to do this in the near feature)

The schedule will contain a set of personalised images, e.g… a bed, toothbrush, story book etc… Keep all images in a little pockets attached to the schedule and the child can stick each image on the schedule (with the help of the Velcro) as and when each action is carried out. Many children with autism adapt and even enjoy this independence they just find it hard to do things in sequence without visual prompts. Rember schedules are great for all children with or without autism.

For the Child that can’t settle try story tapes the tone and gentleness of the story teller could well send them off to the land of dreams.

Sensory reasons may restrict your child’s sleep. Weighted blankets, sensory lighting, sleeping away from a window all may help.

Reduce the amount of food and drink your child has one hour or more before bed. Make sure they use the toilet as this combined may avoid your child waking in the night.

(2) Meltdowns: No, these are not the same as tantrums and yes there is normally a reason behind them whether its anxiety, sensory processing difficulties, an inability to express oneself or a lack of understanding.

Those children on the autism spectrum that have meltdowns will often feel completely out of control and are very hard to comfort.

There are times they seem to come from nowhere, yet most of the time a parent will be able to sense one coming (Especially after so many)

There are triggers everywhere and of course these can’t always be avoided, however here’s some tips for certain situations you may find yourself in as a parent to a child on the spectrum.

(a) If your child has sensory sensitivities then be aware of the environment a child is in! You may notice that supermarkets are a prime meltdown hotspot for the sensitive child.

(b) Prepare a weekly schedule, e.g… times, place, events displayed on a visual timetable or planner. Depending on a child’s age you could use pictures or words. This allows the child to know what it is that’s coming next. For a child who is very dominated by a routine, consider making a handheld travel schedule and for those who can afford one, get one on your ipad.

(c) If your child is becoming very confrontational with you, don’t react by arguing back with the child, it will only make the situation worse and will likely carry on much longer.

(d) Be consistent and don’t give in. A child on the autism spectrum can still work out what gets them what they want, which will therefore encourage the behaviour. (I really need to take my own advice here as I’m still having problems with this one).

(e) If safe let your child get it out their system & avoid becoming overpowering.

(3) Anxiety: My own child knows all about anxiety, he drives himself nuts worrying about things that no child should worry about.

Be careful what your child sees on TV. Little man can become very upset, frightened and distressed when hearing something on the news.

Give your child lots of reassurance if they are becoming distressed.

Be careful what types of conversation are taking place in the child presence.

Use social stories as a way to offer the child reassure. When they are fully informed in what will happen, when for example visiting a dentist etc, the anxiety will be reduced.

Speak to your child in a non-ambiguous way, avoiding misconceptions and upset.

(4) Lack of support from external services: You may feel that your child on the autism spectrum is not having their educational or social needs meet. However it is likely that the local authority (LA) will disagree.

Note: In the UK you don’t have to wait for a senior teaching member/SENCO to apply to the local education authority (LEA) for a statutory assessment of your child’s special educational needs as you the parent also have the right to make such a request! However this does depend on whether the child has been assessed in the past and how long ago this was.

If the LEA refuse your request you can make an application to the SEN tribunal.

You should keep letters and documents filed and in-order as you may require these as evidence in the event you need to appeal.

You are your child’s best advocate, if you feel something isn’t right don’t give up on it in-till action is taken.

If able, take video evidence of your child’s behaviour or meltdowns, this can be used when trying to obtain respite, a statement of sen, or even a diagnosis.

When dealing with the LA/LEA or school do so via email aswell as written letter! This will create proof of contact and what was said.

If you believe your child needs more help than they are currently getting then you’re properly right. Trust your instincts.

You have the right to request copies of your child’s educational and medical records. Educational records can contain evidence for a statutory assessment or a statement of special educational needs (SEN). This can be done by using the Freedom of information & Data protection act. School’s will be given 15 days to comply.

(5) Sensory Processing: Children on the autism spectrum are likely to have difficulty with their senses whether the child is over or under sensitive both can create a host of problems.

Here is a few common issues that some children may experience, though it is important to remember that all children are different regardless of their condition. Your child may face all of the examples below where another may face only a few if not any at all.

Tactile defensive: A child who is said to be tactile defensive will have difficulty with the senses relating to touch. This child may not be able to tolerate certain materials (Little man hates raincoats). A child with autism may feel physical pain from wearing certain garments and this may trigger challenging behaviour. If your child refuses to wear certain items of clothing then note down the fibre that is used and avoid these when out clothes shopping.

If your child is expected to wear a school uniform and is sensitive to the texture of the fabrics it is made from, talk to the school to see if there is a way to compromise and maybe find something that is very similar as to avoid your child standing out from his/her peers.

Wear new uniform in just like you would new shoes. Do this for around five or ten minutes per day increasing the time along the way. This can be done during the school holidays

Some children are sensitive to loud noises, others are even sensitive to certain tones and pitches a noise can create, including the way a person sounds when they speak. Be sure to keep your child’s school fully informed of such difficulties so they are aware of triggers, e.g fire alarms, break-time bell , etc.

Try your child with ear defenders and if successful request that your child wears these while in school.

Sensory seekers: Those children who sensory seek may flap, fidget and swing back in their chair at school. This means the child is lacking sensory stimulation, fidget and sensory toys can help.

Make the child’s environment inviting, bedrooms could host a different range of sensory items as well as bold and fun colours being used on textiles and interiors. There are lots of ways to create this type of environment on a budget and I will try to write a post on how to do this sometime in the near feature.

 

A message for Mr Cameron

Ok, So I had some problems with my auto publisher yesterday and this is a bit later than planed! However I think you will agree it was worth the wait. Colin explains how life is like for him today and back when he was a child. He tells us about his late diagnosis and the effects its had on his life. He even sends out a message for Mr Cameron, stating a few home truths.

Here’s my interview with Colin… A man with Aspergers

Enjoy.

Claire… Hi Colin, firstly let me thank you for taking part in the interview and also a big thanks for your continued support with the facebook page ABWA by way of the great advice and input you give within the page. So my first question to you is…

Would you be so kind to Describe yourself  in five words?

Colin… Obsessive, Stubborn, Shy, Intelligent, Creative

Claire… It’s my understanding that you were diagnosed as being on the spectrum as an adult… If you don’t mind me asking, how old was you when you were diagnosed and what diagnosis was you given?

Colin… I Was diagnosed at age 44, with Aspergers Syndrome

Claire… Can you tell us a bit about how the diagnosed came about? Did you always know you were somewhat “different” to your peers as a child?

Colin… My diagnosis came about through a councillor I was seeing, through talking to me about my past and how I interact socially. He thought I might have aspergers , so then arranged an appointment for me to be assessed to see wether I was or not. as for knowing if I was different or not, yes I did feel different even though I didn’t know exactly what was wrong, I always put it down to shyness and lack of self-confidence and being a little eccentric.

Claire… Wow I’m guessing that the diagnosis was quite a shock then?

Colin… Yes the diagnosis was a shock, even though it confirmed a lot of behavioural patterns that I had put down to something else…  The meltdowns, obsessions, not being able to talk to people etc.

Claire… Has a diagnosis changed anything for you?

Colin… Well if anything the more I know about my condition the more I feel im not in control. I was told that I would either just get on with my life without a hiccup or it would take over my life. Well, its taken over my life, ive let the diagnosis affect me. if that makes any sense.

Claire… That’s a really interesting statement… Do you think in a way you would have been better off not knowing then?

Colin… In my case I would have to say yes, only from my point of view, others might say I havent really changed at all, that the diagnosis has highlighted that it’s a condition not an attitude

Claire… How did family and friends react to the news?

Colin…  My family don’t know about my diagnosis. I havent been in touch with them for six years. I’ve not many friends at all in fact the ones I do call friends live over a hundred miles away but I haven’t seen them in five years, they don’t know! The friends I have online I’ve only told a select few

Claire…” I’m very sorry I didn’t know that you had not spoken to your family for so long and your friends live so far. I’m pleased you have those few people online to be open with (Me included)”

What would you say to the ignorant people who claim our children on the spectrum will grow out of it?

Colin… I would say that my case proves that you don’t grow out of it, as I’ve been told you either have aspergers from birth or you don’t have it at all, well for 44 yrs I wasnt diagnosed but when I was I certainly hadn’t grown out of it from childhood, it just didn’t suddenly appear it’s always been there I just slipped through the net for many years.

Claire… I mean all children with ASD become adults with ASD and sometimes I think people forget this. What do you feel is lacking within the current system in terms of support for adults on the spectrum?

Colin… There is no or little support from the government for adults, cause its taken as read that the diagnosis will be realised early enough to support them at an early age the support seems more geared towards children than adults, we are left to really fend for ourselves. There is a charity drop in center I can go to, but no 24/7 service. Basically I was given a diagnosis and go.

Claire… “I would have to say that this concern is voiced by every adult on the spectrum that I’ve come to know. It would seem the government just ain’t “getting it” either that or they don’t give a S**t!!!”

If I told you Mr David Cameron reads the blog (u never know lol) what would be your message to him?

Colin… We adults deserve support just as much as anyone else! Sweeping us under the carpet don’t help anyone, everyone talks about inclusion but if it cost money or difficult then you can forget it!

Claire… As an adult with AS can I ask you… Do the meltdowns, anxiety and extremely challenging behaviours improve with age, are you better able to control such  meltdowns now?

Colin… In my case the meltdowns still happen, but are less frequent than they used to be. As for controlling them I’m not sure I can control them… All I can say is that they don’t last as long as they did.

Claire… If you could go back in time and do things differently knowing what you know now what would it be?

Colin…  Not sure to be honest, I would have liked to have finished my degree in mechanical engineering, but let things slip. Not sure if that was down to my aspergers or not.

Claire… ” I would say it’s never to late to finish the things you started Colin”

How was your school life growing up?

Colin… I Was bullied at school, was a quiet and shy child who was quite happy to play on my own as well as with others. My obsession with music was noticeable to me at an early age about 10 years old.

Claire… “Oh my goodness I’m now getting an insight into the mind of my own little Aspie! Little man is 10 totally obsessed with buses and nothing has ever come closed till…… Now that is. He is a fan of Bruno Mars has stored a huge amount of info on the guy and after getting his album two days ago has memorised every song lyric for every track on the album. He can’t sing through and can drive me a bit potty with his singing lol”

So a quick change of subject! What do you think of our current educational system given that ASD is much more known today?

Colin… I Can only go from my own experiences, since I left school in 1979, can only say that the educational system is slow to react to things even when highlighted. Bullying is still rife now so what does that say?

Claire… “No Comment Colin”…. You know what I think!

So… Do you have any “special interest” Passions that take hold of you? Are these long-standing or do they change over time. Is music still a big part of your life?

Colin…  Music has always been a big part of my life, I’ve  been collecting music in various formats since I was 13. I’m obsessed with downloading music, writing poetry. All other obsessions come and go.

Claire… When are you happiest?

Colin…  Plugged into my iPod and writing poetry.

Claire… Do you or did you have Sensory processing problems as a child? Have these changed, improved or just been replaced?

Colin… Noise affects me and always has…  Just different levels or situations are more difficult to deal with than others, people eating, dogs yelping, get woken by the slightest noise so my sleep pattern is bad.

Claire… “I’ve always thought that Little mans father is an undiagnosed aspie and his pet hate is hearing others eat. You crunch he freaks out”

So, they say some people with AS have a high pain threshold! Do u? Little man don’t really get ill or catch bugs that often (unlike his younger sister) but he feels pain “big time” (if there’s blood we are in trouble) so, this don’t apply to us lol.

Colin…  Not sure if I have a higher threshold for pain, but I have a high threshold for dealing with low temperatures, don’t seem to feel the cold as deeply as others do.

Claire… “Yep Little man is the same…. No coat in winter and don’t take it off in summer”

Did you have many friends as a child and do you now?

Colin…  None, that’s my problem I don’t seem to be able to keep friends. People come into my life and then I let them fade away.

Claire… How do you find social situations?

Colin…  Still difficult, even with people I know.

Claire… What subjects did you excel in at school and what ones never made sense?

Colin… Technical Drawing and Maths.

Claire… Interesting… Can I ask is it mental math that your good at? Just that little man is ace at mental math ( better than me) and other parents have reported the same.

Colin…  Yes mental maths… I used to go to the shops at age 5 for my mother and was always able to count and know it was the right change I was getting for the items I was getting. still don’t use a calculator much in daily life.

Claire… It’s said by some that those with AS lack empathy! What do you say?

Colin… Maybe we lack social skills, but we are loving we just don’t know how to express things well, as for myself I express my self better in my poems than actually speaking etc

Claire… What advice would you give to an adult reading this that suspects they are on the spectrum? Is it to late for a diagnosis, is it really needed?

Colin… It really depends on his or her situation, whether it is affecting work and home life never too late for diagnosis.

Claire… What advice would you give to a child/teen that is struggling to come to terms with their diagnosis seeing themselves as someone who is  “abnormal” with very low self-esteem?

Colin… We are normal, we just look at the world in black and white rather than shades of gray, we can be too trusting. but as people we are no different from what is described as normal! We want to be loved, laugh, etc

Claire… “I just showed this to little man and he said thank you… He likes that!”

Colin… Tell little man I said thank you, us Aspies stick together.

Claire… What advice would you give to parents like me raising a child on the spectrum?

Colin… It will be hard, but if you keep giving your love and support as much as you can, the rewards will come, you will see your child grow into adulthood… I’m not saying with less problems but with more understanding and maybe more control.

Claire… Finally, I’m a big fan of your beautiful poems… I’m wondering if you could write one for us to sum up how life on the spectrum is for you. This would be a great ending to our interview.

I am seen but not seen

They see the book cover

Not the story inside

I breath, I bleed, I think

But I am not part of the crowd

My world is black and white

I can not understand

Subtle shades of grey

Warm bloodied

I am still bereft of love

For emotions are hard to fathom

What is easy for most

I find a mountain to climb

Do not pity me or scorn me

Do not hate me or ridicule me

Born from the womb

I am of flesh and blood

I am human too

By Colin Weir

That was fantastic Colin 🙂 Thanks again for giving us all an insight into the mind of a man with Aspergers.

Please feel free to leave your messages for Colin and I will see he gets them. If anyone would like to contact Colin you can friend request him on Facebook. Let me know and I will be sure to pass you the link.

Why Autism Sunday Matters!

Today is a big day in the land of autism for today is autism Sunday.

It’s sad but true, that for so many this means nothing. But then if Autism Sunday existed some ten years ago would it have meant anything to me?

“In a nutshell.. No” I would not have gave it a second thought to be honest, So to judge others would be hypocritical of me.

However things should have moved on a lot more given the rise in numbers of diagnosed cases of ASD today.

Little man was given a late diagnosis of Aspergers. Despite being taken on by camhs at age seven. During that very first visit we were told by the psychologist AS was likely to be a suitable diagnosis and referred onto the commications clinic he was actually nine when he received the formal diagnosis. That first psychologist who just knew it was AS moved to sunnier parts of the world and our loss was Australia’s gain. I beleive that if he never left things would have been formalised much sooner then they were. It was said that he displayed a mixed picture as school were insisting that they had not seen the behaviours I described saying that in their opinion any school problems were down to poor school attendence. I had a child who was on the spectrum and school phobic! But who the hell would listen? Two successful court apperances for the LEA shows that no one would. The same psychologist told us before he left that in his opinion it would only be a matter of time before little man is no longer able to surpress his anxieties when at school and as he gets older the taits of his suspected AS would unfold right before they’re eyes in an explosion of meltdowns, inappropriate languge and maybe even episods of violence that are beyond his control brought on by pure confusion, frustration and misunderstandings. By this time it would likely be to late for the mainstream relationship to continue.

As soon as he told me AS was suspected I cried so much that my eyes hurt, they honestly burnt… I then went home and started educating myself on everything autism spectrum. Suddenly everything begain to make sense for the first time in ages. For me it was becoming clear my child did in fact have AS or ASD. Later during my first court apperence for little mans constant school refusal I discovered the letter camhs had wrote to the school… It stated that they thought little man had ASD maybe Aspergers and that I was finding it very difficult to get little man to school, the likely effects his possible AS, insomina and anxieties. He went on to say I would need more support. He said he did not feel little man’s attendence concerns were due to a parental issue. It then went on to state how I was very shocked at the possible diagnosis and had become quite emotional. He had basically told them to give me a break! Yet stappled to that very same letter was a statement made by the then attendence and welfare officer (AWO) that read… “I can’t understand why mum would be so upset as it’s in the family” She was referring to little mans cousin on his fathers side, who was diagnosed with Autism aged 2. I was shocked to the core… How bloody insensitive was she! Come on if you have a family history of cancer, heart attack, diabetes which I do, would it therefore mean a person should not be shocked and emotional with a diagnosis of this kind? I’m not comparing any of the above to ASD I’m simply making a valid point of, “No matter what the bloody family history a diagnosis of any kind is bound to be an emotional one for any parent!” This woman showed ignorance on a whole new level.

Though my nephew now 8 was given a diagnosis of autism at two, I still knew little about the condition despite actually unknowingly raising a child on the spectrum. He was my first born and though I knew he was different I just didn’t know why.

I was treated like a lazy arse mother who couldn’t be bothered to get herself and child up and out of bed in the mornings. The threats of court action that were eventually carried through by the LEA and delivered by AWOs nearly broke me not once but twice! “This wasn’t what me or little man needed!” I would think to myself while sat though parenting classes that were directed at parents of unruly children (mainly teens) A few of the topics discussed included drugs, truancy, sexual relationships and teenage pregnancy! I stood up one evening and said, “what the hell am I doing here? My child is eight years old!” This was absurd, to my knowledge little man didn’t have a bloody clue about drugs! and I sure as hell hoped he wasn’t planing on making out with the ladies just. Still I sat through many useless classes as a result of that first court order.

Lucky for me the second court apperence was a nice big fine instead! Note, * Pure Sarcasm* Yet it could have been worse the LEA were taking me to court on the more serious charge of 4441(a) which basiclly means… Being a parent of a child of compusory school age who has failed to ensure their school attendence and the parent knowingly allows this by not taking him/her to school as opposed to 4441 of the education act that just means the above excluding the knowingly allows part! So how could it have gotten any worse? Well the penalty for 4441(a) is a prision sentence, level 3 fine or both. The judge dismissed the LEAs claim and although I was punished for having a child with AS who was a school refuser it was treated as 4441 meaning a lighter punishment of a £300 fine that I didn’t have so had to pay in installments. Of course this money would be better spent on my children, but hay injustice is never fair.

You really need all this what with being a parent of three children, two school aged (one with AS) and a newborn baby (yes second court apperance was served on me a few days before I gave birth to my youngest

Well the psychologist was right and those that read regularly will know that yes little mans AS did unfold before the schools and LEAs eyes and was dealt with by way of isolation, exclusions (I’ve lost count) In fact little man was being excluded as I stood in court like the naughty mummy I am! and now he receives education otherwise then at school while he awaits a place at a special school and the copy of his final statement of Special educational needs. There is also a pending disability discrimination hearing so a lot has happened since them court apperences most of it isn’t great as you can clearly see.

It’s no good being bitter, It eats away at your insides! However it’s hard not to be given you have stood in court twice, your childs school reported no issues and a year and ahalf later his had more exclusions then I’ve got shoes, you battle for a statement and work your arse of preparing your case for the tribunal due to your claim of discrimination, your child is now without a school and has zero self-esteem, you read reports from education professionals that show that they spend more time assessing you as a parent and questioning your mental health, that the child is left to fall through the cracks in the system, your tired.. so fucking tired that you burst into floods of tears because you spill the cereal at breakfast and you even forget your own bloody name when filling out forms!

Despite all the above I can now say I’m not bitter! I’m stronger! Though my battles are clearly not over and likely one will always arise. I’m putting my experiences to good use by helping others. I’ve done my training and now help other parents of children with autism with a right of appeal to the tribunal. I’m working with little man and his tutor to repair the damage of late diagnosis and mainstream school and today I will be saying a pray asking god for better understanding and support for those children and adults with Autism and Aspergers. Please Note this is not because I believe they are incabable of leading a perfectly good normal life, but because I believe the system does a pretty fine job at trying to make sure they can’t! Late diagnosis, long waiting list, battles to statement, lack of provision, jobs and support services are lacking and though I follow an array of campaigns trying to better all the above, progress is still lacking!

I think David Cameron needs to do a little more then say a few supportive words in aid of autism Sunday! However what did we expect when words are free! Let’s not bank on any support that costs money! The man is slowly stripping the country of it’s children services alongside the very few service supplied to adults on the spectrum.
I think in all honesty the man has some bare faced cheek.

Later today I will be posting an interview on the blog that I had with a very nice man called Coiln who wasn’t diagnosed with Aspergers till he was 44 years old. Did he get the support once diagnosed?

I think we all know the answer to that. What will it take to make things better? Anyone!

I wish you all a great Autism Sunday! Let’s aim to raise some real awareness today to all those untouched by ASD.
We are not asking for anything but a little less ignorance and tad more understanding as the odds are rising that someone you know now or sometime in the further, will have a autism spectrum condition with numbers of diagnosed cases rapidly increasing it seems like an idea to me.