( Austin often likes a tune to go with pieces he has written so this time he has gone for the obviously linking track by Keane https://www.youtube.com/watch?v=Zx4Hjq6KwO0 )
So, it is that time of year again when everyone has pretty much returned to school. The many ‘obvious’ changes around this point we are within the Autism community very aware of. Changes in teachers, peer groups and repainted rooms are just a tiny scratch on that surface of the issues we all know can cause a difficulty for many on the spectrum at this time.
The transition from year to year is a big one and strewn with obstacles to catch us out. A great transition plan started back before the end of the previous academic year can go a long way to cushion the impact of these obstacles. Pictures of new rooms and staff or even the chance to visit them can take much of the sting out of them. Sometimes though this still has its failings. I have encountered many a child who has been given a GREAT plan. They are aware of their new teacher and even know some details about them. The room they will be in has been visited and even a spot to sit in picked out. This all sounds great until September rolls around and we find that new teacher is actually more of a Tony Hart than a dour scholar and has transformed this new teaching space into what can only be described as a section of the Rain Forest Cafe! Caffeine energised murals, loo roll palm trees jutting from walls and creatures hanging from ceilings have suddenly transformed that comfortable ‘known’ space into a living hell that can take a LOT of time for a child on the spectrum to acclimatise to. Also this can throw up trust issues. Within that is a stream of information clicking away thinking ‘hmmm you told ME I would ENTER this room shown in THIS picture…..and yet I walked into THIS!!’
If we were to list all those transitional issues this piece would take days to read! On the whole they are all things that with the right time and warning strategies can be put in place for.
However, what about all those things we CAN’T clearly map or be aware of until they actually happen? Those things that most people NEVER stop to consider, the other children themselves.
I am not referring to children who have left a peer group or those who have maybe joined after a family move. Here I am talking about the actual change ‘within’ the children.
Through life we all change. The way we act and think alters as we make our way through it. Some of the biggest changes come when we are children. Stop to consider toddlers and very young children just happy to play and sit in the sand with whoever happens to be there. As they move into the very lower ranks of school they do still stay together with a wide acceptance of each other. A ‘class’ or ‘form’ group nurtures that mentality for a while longer. When the time comes to graduate through the years we soon enough see that bigger group splinter and exist by form name only. That form is now made up of smaller groups. Friends who can tolerate each other, but don’t think much of others, form little cliques. Those who like a certain strain of music or favour a particular brand of clothing move towards each other like magnets. The children who want to sit and conscientiously work hard edge away from those happy to sit with pencils up their nostrils ready with a rubber band to fire with crack precision at any moment.
The very way children act, behave and how they want to just ‘be’ around others is for many years in a state of flux. I say this because those changes aren’t always immediate and can often be gradual as they still link to older friends they have always known before fully switching to that new clique. Even more confusingly is the fact that some of this can also be done conditionally! Within school a child might need to appear a certain way and only be with that set clique and yet away from there they are happy to spend time with those rejected in school for having the wrong trainers.
As mentioned some such changes can be very gradual. When you think about a summer holiday covering up to 6 weeks, and longer for some, you can understand why the difference in a child’s behaviour between the end of a school year and the start of the next can seem so sudden and vastly different to someone who doesn’t see them over that period.
These are things that most children, and then adults, learn to accept in life. It can bring some soul searching and wondering what they possibly did wrong but on the whole they continue with the flow understanding in the fact that the supposed status quo often changes.
Now though let’s stop to consider the youngster on the spectrum who maybe doesn’t so easily grasp or accept change. Much of the change that does have to be accepted and overcome is obvious and tangible. The issues can be seen and identified by that child. The problem is though; when it comes to the changes we have mentioned within children themselves they are not so obvious or tangible. That child on the spectrum finishes a year knowing the people they have learnt to accept, or in many cases just tolerate, and knows that in some way that is reciprocated. A set status quo exists around those parameters. So, how does that child cope when they return to school to find the person they thought they could once again sidle up to maybe no longer wants to share any amount of time or space with them? Nothing obvious has happened. They have done nothing they are aware of to cause this reaction so why has it happened?
If you stop to consider that a child on the spectrum may not always be quick to speak up or voice their worries then you can understand why such changes can present as a very negative time. The things and people that you thought were set in stone are now very different and for no known reason. On top of this you can’t clearly communicate this issue to anyone else and so it stews away inside you bringing its own ever increasing circle of anxiety.
Also at this point stop to consider how you have felt in life when someone has ignored or shunned you. Did you like that feeling? Did it not bring with it further emotional reactions within you such as feeling lost and alone? You can see how someone not understanding such a situation or in any way wanting to communicate about it could along with the anxiety start to feel very depressed.
So, is there anything we can do to stop this? Is it possible to line up your child’s peer group and tell them very Peter Pan style NOT TO GROW UP!!?? I think we know the answer to that is a definite no.
The truth is there is very little we can do about such changes in life, however, we should not just brush them away and hope everything will be ok. These are some of those almost ‘hidden’ issues that we need to be aware of. If a child is struggling, when everything possible seems to have been done, within such a transition year to year then DO stop to consider these points. Reflect on whether the issue could be this not so obvious and easy to grasp situation.
Consider carefully how to approach the subject. For me all personal issues are just that…… VERY BLOOMIN PERSONAL!!…. Someone trying to engage with me over them will instantly cut to my inner core and at that point I don’t know how to regulate the welling of emotion that I will feel. From that point on I am likely to just further shut down and withdraw or even act in a way that may not seem too pleasant (challenging behaviour) So, it is important that you approach such matters carefully and in an almost ‘throw away’ manner so it doesn’t seem so personal and direct. Remember to not just reassure that child on the spectrum that this part of life is natural and ok for them but that it also happened to YOU and everyone else around them. This can help stop that child feeling or thinking this is an isolated thing that has only happened to them.
We are not all mind readers so it can be very difficult to detect such issues. By keeping them in mind though and always stopping to consider the things in life that aren’t so stand out obvious you can be ready to bring reassurance, support and extra love should they present.
From a personal point of view I can say that I have very much struggled when people have ‘changed’. It is something that has always unsettled me and driven me to want to receive a clarification of WHY that person has changed in the way they have. Even on a day to day basis a person acting differently simply because they are in a bad/different mood can often cause me to be inwardly anxious about what is going on. I don’t stop to think ‘this will pass and all will be ok’ I just worry about and react to the change in mood there and then.
Life as a path can often appear a very obvious and set route from baby to child and on to adult. The truth is that path has many hidden twists and turns that at first glance we don’t always see until they are upon us.
(As ever it is important to point out that the Autistic Spectrum is very wide and diverse. With that in mind it is important to remember that our words are in no way meant to encompass everyone at any one time. People across the spectrum present with many different issues and some can cope with things that others can’t so please don’t ever feel that in what we write we are saying ALL will encounter or present with these problems)
Anna Kennedy Online
Anna Kennedy OBE and her 2 sons Patrick and Angelo at last years Wear it for Autism Charity Fashion Show.
A North East Mum Anna Kennedy has two sons with autism is Chair of an autism charity and online support website. The charities online survey found that more than 50% of families had to wait five years or more to get a diagnosis for their loved one. Anna Kennedy from Middlesbrough has two sons on the autism spectrum; 24 year old Patrick and 21 year old Angelo. They now live in London where she’s started her own school for children with autism after they were turned away by 26 schools. The school is now a Centre of Excellence for children and young adults with autism and the largest school in the UK. Because of her amazing story, lots of parents started contacting Anna for advice and to share their experience of raising children with autism. This prompted her to start her own website www.annakennedyonline.com and she has built up a following of over 70000 families across social media. Last year she was also made an Honorary Doctor in Professional Achievement at Teesside University. More recently, Anna and her colleague Austin Hughes met with the Department of Health to share results of her survey on autism diagnosis. Out of 2,000 respondents, more than half said they’d waited five or more years to get a diagnosis for themselves or a loved one. Listen to Anna Kennedy OBE interview :
Bonfire night and the time around the 5th of November is one of those periods of time when we have to stop and think about what is happening. Many people aren’t too keen on the bangs and flashes that erupt without warning but they have an understanding of what is happening. Imagine if you were sensitive to certain noises or disturbed by flashes of light but you have no understanding of what is going on.
We take most things around us and our acceptance of them for granted. When we are sat at home of an evening and we hear a firework going off we know what it is. Our logic and minds tell us that considering the time of year it must be a firework. With this information in mind we don’t panic. The noise may disturb us a little but on the whole it doesn’t bother us. Someone on the spectrum on the other hand may, due to imagination and theory of mind related problems, find these sounds of explosions disturbing because they don’t automatically think ‘ah yes a firework!’ to them it is just a sound that has suddenly taken place which isn’t usually there. Not only is there a problem building with understanding what is happening but also with the fact that the ‘norm’ is not being its normal self. It is possible for a person to see and understand that it is a firework but there could still be an issue with ‘Why now?!’ as they evaluate the situation and think ‘hmmmm this doesn’t happen most nights so there could be a problem?’. If someone is suddenly made to feel nervous because of strange things happening then this can lead to a heightening of behaviours as they remain on edge.
Many people have said each year that this time can be difficult, so, what can we do?
Let’s not forget those good old ‘basics’. Most parents know the distracters and comforters that will work with their child when their behaviours are up so this is a time to ensure you have these good old aids ready and close to hand. Favourite music, DVD or even game to play. Whatever it is that works for you and your child or relative make sure you have it ready so that if they do become disturbed or agitated by the noises from outside you can quickly turn to them to start easing the stress. It could also be a good idea to not just have the distracters ready on standby but to also plan a couple of evenings through with activities that you know they love. If you can keep a person’s mind busy on something then it is amazing just how much they can shut out other things.
If you already know that your child/friend/relative will be disturbed by the sound of fireworks then think ahead. Try and get all the curtains shut earlier than you maybe would normally as it’s amazing how much they can muffle sound from outside. Having the curtains/blinds shut will also shut out some of the flashing and light as fireworks going off. It could be a good idea to ensure that around the house there is some constant background noise. In one room you could leave the TV on and in another the radio etc so that whichever room they happen to be in there is always some kind of noise that may just take the edge off of the explosions outside.
The best way to deal with many such situations such as this time of year is to actually introduce it to the person. Again we too easily presume and understand things and forget that someone else may not, so do take the time to go through what is happening. You could put together a ‘Social Story’ with some pictures of fireworks going off. On things such as YouTube you can find videos of just about anything so why not look up one of fireworks. If you can show the person an example of a firework going off and what it might sound like it may not make them like them BUT it lets them know what it is that is happening. Too many problems with those on the Spectrum are related to a basic idea of comfort and happiness. ‘I’m use to life being this way and that pleases me’ ‘when things suddenly change that makes me worry and panic.’ Anyone sensitive to the changes and events that take place around us will be disturbed by the sudden arrival of all these explosions and flashes coming from all round so let’s not leave it that they are worried let’s bring them ‘comfort’ by letting them see and understand what is happening. If a person is more comfortable with what is happening then they will feel better within themselves and behaviour should keep to a level that is easily managed. It is important to always put yourself in that persons shoes. Just imagine how you would feel if you had no concept of ‘Bonfire Night’ and suddenly there were explosions etc around you. You would be frightened to start with and then also you would worry about what else is to come. If you had no concept of the 5th November how could you know that it is just something that happens for a small period of time each year? You would be worried that it was going to keep going and maybe even get worse! The unknown is a very frightening place to be but some of that fear can be removed by making the unknown something you have seen and understood.
Be ready to ‘comfort’ and ‘support’ as these are things that more than anything will help you through any rough times that may come such as now. A person scared of what is happening is in need of reassurance and to just know that ‘everything is ok’.
For those of you who know their child will like the fireworks etc that is great and please do go and have some GREAT fun. Remember though that even someone that ‘likes’ something can very quickly suddenly not like it so be prepared. If you are going to take them to a display think about taking some ear defenders with you that just take the edge off the sound. We know displays as a whole are noisy but there is often the odd big bang that makes us all jump so those ear defenders might just stop those from frightening someone which could in turn mean they no longer like to watch them.
If you are doing your own fireworks at home then please be EXTRA vigilant. Remember that someone on the spectrum may do something because they have seen Dad/Mum do it (like most children!) so they don’t intend to do something dangerous but may end up doing so following your lead. Often the same ‘danger’ instinct that we all have is not always present on many levels of the spectrum so if you are having your own display then ensure there are a couple of other people with you to ensure that the children don’t suddenly decide ‘wow these look great and I want to be nearer to them!’
Have fun everyone and enjoy the Fireworks if you can, but, most importantly stay safe!
(An article written by Austin Hughes)
Wear It For Autism’ is pampering Mums, Dads, Grandparents and Carers – who either have autism themselves or care for those living with the condition – they are having a full makeover and taking centre-stage in a super-stylish fashion event at London’s Millenium Hotel , 17 Sloane Street; Knightsbridge; London, SW1X 9NU Oct 6th. The event will take place in Le Chinois Restaurant and Bar.
This year we are excited to be supported by Models of Diversity and Pineapple Performing Arts. Find out more about their amazing work on https://www.modelsofdiversity.org/ https://www.pineapplearts.com/
Anna Kennedy OBE said:
“The idea behind Wear It For Autism was to spoil those who usually never get a chance to treat – or even think – of themselves. Living with autism can be challenging and extremely demanding so we wanted to create a special event, that would be fun for all involved ‘ Tickets for the show will be available soon and all ticket holders will receive FREE goody bags!
Our judges Steven Smith , Angel Sinclair , Dr Pam Spurr and Maggie Paterson, Sam Tomlin ,Fiona Shepherd have now selected their winners from each category . Many tears were shed through this process since many of the nominations were heart wrenching and inspirational.
Winners are …. Drum Roll Please…….
Mums : Ann Wright, Sharon King, Maimuna Mutaasa and Lisa Embery-Donaghy
Dads : Craig Binns and Lee Cook
Grandparent : Sandra Trotter
Family : Anne & Steven Rann
Adult with Autism : Dani Bowman
Child with Autism : Sophie Jayne Garner
Young Carers : Demi Stamp and Emma Bell
Congratulations to you all
There has been no shortage of support for Wear it for Autism. Celebrity supporters and presenters this year include Arlene Phillips CBE, Mitch Winehouse Kirk Norcross, Amy Willerton, Steve King. Lydia Lucy, Olivia Cox, George Gilby, Nicholas Macdonald , Keith Mason, Dr Pam Spurr ,Jess and the Bandits and many more .All the winners will be treated to a top-to-toe makeover by styling experts and take part in the ‘Wear It for Autism’ catwalk show.
Celebrity stylist and fashion designer Lewis-Duncan Weedon will be heading up the style team, and will be making sure everyone feels like a million dollars. www.meademagazine.com
“I was honored to be asked to style Wear it for Autism. Autism is very close to my heart, and I am very much looking forward to supporting the event and styling the winners from the Wish Want Wear designer collection. Families, individuals and carers who are affected by autism have a full time job, and Wear it for Autism is giving them a day off.” Explains Lewis-Duncan Weedon.
Scott James and Ryan Wiggins participants in our Autism’s got Talent will also be singing and performing at this prestigious event.
Tickets for the show are SOLD OUT all ticket holders and VIP’s will receive FREE goody bags!
Sponsors are Living Autism, Miglio Jewellery, Models of Diversity, Damsel in a Dress , Immortal Couture,Thomas Farthing, Bon Prix UK, My A -dress Book, Pineapple Dance, Pineapple Performing Arts, Third Sector Gallery, Rheas Events, Shine like a Celeb , Lorena Oberg, Carshalton College, and many more
Please see last years show filmed by Sky TV : https://www.youtube.com/watch?v=G3YjUx9O13I
Last years show a fantastic success and fun had by all!
Anna Kennedy at The House of Commons sharing the results of her survey.
During November, 2013 two thousand people with an autism diagnosis or are the parent or carer of someone who has a diagnosis completed the “Autism Diagnosis Survey in the UK”.
This is the largest survey of its kind involving people who have an autism spectrum condition. The work was carried out by volunteers for Anna Kennedy Online, a growing UK charity with limited resources which advocates for people affected by autism spectrum conditions.
Questions were asked about the diagnostic process which ranged from when the condition was first suspected to when the diagnostic process was initiated, and how long it took before it was completed.
Other questions addressed the challenges for individuals and families associated with the assessment and the ability of the professionals involved to embrace a constructive, multidisciplinary approach. Participants were also asked to comment on the quality of support they received during the assessment.
Anna Kennedy Online decided to carry out this work after listening to the many people and families affected either directly or indirectly by the condition who had contacted the charity either in person or through social media.
What came across was their frustration due to the depressing length of time the whole process was taking given that the books and information they were reading spoke about how important early intervention is for children on the autism spectrum.
What follows are the results we obtained from our survey. To help you appreciate the difficulties people experience on a day-to-day basis, we have also provided some quotes from the many families and individuals who participated, who were keen for their voice to be heard.
In 58% of cases it was the parents who first suspected or had concerns that their child may be on the autism spectrum due to their behaviour or development. In our opinion this clearly illustrates the importance of listening to parents.
- 1. In relation to the person/ child who it was first suspected may have an autism spectrum, what was their age?
- 76% of cases involved a child under 5
- 16% of cases involved a child aged between 5 and 10
- 4% of cases involved someone aged between 11 and 20
- 4% of cases involved adults aged between 21 and 50
- 2. Having suspected the existence of an autism spectrum condition, at what age did the diagnostic process start?
- 59% of cases the child concerned was under the age of 5
- 30% of cases the child concerned was aged between 5 and 10
- 9% of cases the person concerned was aged between 11 and 20
- 2% of cases concerned adults aged between 21 and 50
Of the people who were given the diagnosis
- 38% were children under the age of 5
- 39% were children aged between 5 and 10 years old
- 12% were aged between 11 and 20 years old
- 11% were adults aged between 21 and 50
91% of families were given the diagnosis through the NHS, 9% privately.
63% of families stated the process was poor to average.
With regards to the professionals involved 55% were assessed as being between average to poor when it came to working together with others for the benefit of the child or adult concerned.
54% of the participants found the process difficult.
71% of participants shared that it was not easy to find vital information as to how to obtain a diagnosis nor in many cases was it explained where a diagnosis could be obtained.
To summarise the above data for children and adults who eventually received a diagnosis, please see the table below:
Age ranges of the persons who eventually received a diagnosis
Age range of individuals where existence of the condition was suspected
Age range of the people when diagnostic process was eventually commenced
Age range of the people when the their diagnosis of autism was finally given
5 – 10
11 – 20
21 – 50
The disparity particularly between highlighting the possible existence of the condition to relevant individuals in children under 5 and when a diagnosis was obtained highlights perhaps the main cause for concern.
Over 50% of the families from when first suspected waited up to 5 years or more for diagnosis.
The results of this survey it clearly demonstrates that the process in place for diagnosing children and young adults is not fit for purpose and requires immediate improvement. Parents who manage to negotiate the energy sapping bureaucracy often find that the service provided is disconnected and in many cases is of unacceptable quality.
Professionals may have a different opinion though I would direct them to the up to date research by Dr Laura Crane on Autism Diagnosis Project Survey of Professionals at Goldsmiths, University of London.
Our research is based on the survey and speaking to people who matter namely the parents of children and young adults affected by autism. Concerns have been raised in the past however nothing or very little seems to happen.
The challenge to the Government is to sort this out and let parents know when this will be done. After all if it’s not the Governments job whose job is it?
Please don’t let the voices of the many people who contributed to this survey remain unheard.The time to act is now!
Please see a few quotes from parent’s experiences on the diagnosis process:
The process was scary, emotionally destroying (as I was first blamed as the “reason”) for over 2 years with CAMHS (Barnet- London) Then in one glorious day, 4 experts on Autism (SCAN) diagnosed our son in under 2 hours though we were there longer. There was no grief, just pure relief at knowing we could move forward and it WAS NOT my fault!
Bobbi Elman, Edgware, London
We knew Emily was autistic from when she was 2. We were involved with lots of professionals yet none were prepared to diagnose. She was eventually diagnosed at 9 with Autism and learning difficulties. The waiting list for assessment for Autism was horrendous so we said we thought she had ADHD. The list was shorter. She was assessed and they said no to ADHD but yes to Autism. 7 whole years of utter frustration and schooling that didn’t work for her as a result.
My son’s diagnosis took a year. I was told we will refer him to a ASD panel. He was left in a mainstream nursery. He was excluded from Xmas plays etc. I had to wait a whole year a fight for a diagnosis just to be told what I knew and to get the help I now get from an outstanding special school Broadmeadow in Wolverhampton. The early years SEN team came 6 month after they were asked too.
Parent of a child with autism.
Our diagnosis followed the third referral to CAMHS from the SENCO at primary school. During those last few months my husband and I had already decided we were looking at Aspergers after meeting a family with a boy the mirror image of Conor on holiday. WE swapped boys for a few hours and both concluded they were peas in a pod and he had been diagnosed years before they adopted him. CAMHS did the ASC 2 her test with Colin and I and interviewed Conor and we got the verbal diagnosis within a couple of weeks and the letter in about two months. The diagnosis process was therefore not to drawn out but the referral being accepted to get to that stage was five long years.
Jan Whiley from Crawley
Autism Diagnostic Tool: Which one do we use?
At this time the action of diagnosing ‘Autism’ is lacking any direction. For too many years now people have been trying to make a big issue fit a box that it never will. There is a want to classify and make the Autistic Spectrum something smaller and more defined than it actually is, in doing that we now have too many cases of people not receiving a diagnosis or having to wait for years of medical in-fighting around them to gain one.
Even down to the very basics of which diagnostic tool is used is not clear. On the one hand the NHS sets out that ICD-10 IS the diagnostic tool recognised and used. On the other hand professionals WITHIN the NHS state they diagnosing to what the DSM-V states and often misunderstanding what is within it. Instead of giving an ASD diagnosis, as was meant to happen, we now have evidence of families being told ‘ah we would have given you a diagnosis before but under DSM-V ‘Aspergers’ no longer exists and as your child’s symptoms meet with what we view as Aspergers we can no longer diagnose’.
Unless all health professionals FULLY understand the ‘Big Picture’ that Autism is and the full scope of the Spectrum and are given a ONE go to point to diagnose from this system is always going to fail.
Please sign our petition we have almost 5000 signatures already:
Anna Kennedy Online
‘We must use time wisely and forever realise that the time is always ripe to do right’