Is Charlie racist and rude? Does he need excluding for his behaviour? Or is Charlie struggling in a neurotypical world where he is mis-understood?

I wrote this blog a couple of years ago https://www.smarttalkersblog.com/2019/02/doesnt-listen-is-rude-homophobic-racist.html In many ways this could be Charlie about whom I’m talking. It wasn’t, I hadn’t met him, but I meet hundreds of Charlies a year, and I have done since 1986. Charlie is autistic and a part of him being autistic is that our neurotypical world does not suit him. He appears just like his peers: bright, chatty and able but Charlie is actually from a different culture. In the autistic world, the typical rules of politeness or saying ‘how it is’ do not apply. As part of being a neurotypical adult working with autistic teenagers it is our duty to understand this and to deal with it. 1. Say it as it is: the bluntness of autism If a 14-year-old teenage boy told me I was fat and ugly I might be offended if he was neur0- typical. If he was autistic, I would thank him for pointing it out and realise that he was just telling me the truth. This descriptive bluntness may also apply to people’s obvious ethnic backgrounds or other neurotypical ‘sensitive’ topics. But that's what it is; it's a description, it is not an insult. So, if an autistic teenager calls you a ‘black idiot’ then you could be offended perhaps by the ‘idiot’ but not by the black descriptor, if you are of Afro-Caribbean origin. He doesn’t mean anything derogatory. 2. The wanting to fit in Other autistic teenagers will want to be seen to fit in so may use phrases or sayings that they have heard of the children use. These may be ‘cool’ children, who autistic teenagers would like to emulate . They may want to impress these cool children or indeed other children . However, it does mean they will be using phrases or words they don't necessarily understand and certainly don't understand the full implication of using. Therefore, the consequences of this sort of language used in school should not be the same as for neurotypical children, it is part of reasonable adjustment. A child like Charlie responds well to discussion about such issues . He does not want to offend or to be rude. He does want to fit in. 3. Neural response By the time a neurotypical child is a teenager, we expect them to have control over their emotions and their emotional outbursts in school. However, non neurotypical children cannot be expected to have this same control. It is unrealistic. Professionals must understand the difference between cognitive control and neural response. Neural response is automatic, so children and young people are likely to do things in the heat of the moment without actually being in control of what they do. It’s a typical stress response e.g. the fight as part of fight, flight or freeze. Trauma informed schools are extremely good at understanding the neural response of an autistic child which may lead to seemingly undesirable behaviour. A neural response is the key difficulty of a child with demand avoidance and MUST be seen as an anxiety or panic attack. As with anxiety or panic attacks, the child needs supporting not punishing. 4. Executive function We must know more about executive function as professionals working with ND children and teenagers . When we do, we realise that they may have no filter, so this will be another reason to ‘say what you see’ without the typical ability to think twice before you say anything. This is an issue with the prefrontal cortex so shouldn't be punishable but can be guided when there is a rapport and trust between professional and child. I could go on but I'm short of time this morning however it is imperative that Charlie’s behaviour is understood. His behaviour is communication; he's communicating to us that he's having a hard time. Professionals must, as part of reasonable adjustment find a way of dealing with this and not seeing his responses as illegal, unlawful or punishable. I actually find Charlie to be a completely delightful young man!

And you never noticed

For my darling girl, when I find the time and the courage to write again: 

Dear SENCO, I did notice, I did tell you, repeatedly. I shared all the information. I had about my child with you. But your hands were tied, funding, policies etc.

You "didn't see anything" in school. Although my girl couldn't cope with school dining room, sat on a wobble cushion in class, wore her ear defenders constantly, was always the last one to be ready for PE, left school every day with Mum waiting at classroom door with her favourite cuddly toy and threw her school bag at mum, stomped accross playground, got into car, started to shake and refused to cry until car was on the main road and past all her peers who walked to and from primary school as a group, without their parents.

You never noticed that she ate the same packed lunch every. Single. Day?

You never noticed that on every school trip she needed to sit next to the same teacher, at front of coach and eat polo mints, because she got travel sick.

You never noticed her pulling her hair out in class, scratching herself til her cuticles bled, that she returned to school after summer break with eyebrows and eyelashes and hair ina pony tail. You never questioned why 5 weeks later, after school residential, parent sent photos in of child's depleted hairline, non existent eyebrows and lack of eyelashes?

You made an emergency referral to Social Services citing "Safeguarding concerns" when 3 weeks later parent emailed to say child has had 2 panic attacks at weekend, said she wanted to die and would not be in school because you were seeking an urgent private apointment with a Paediatrician? Because child had been on the CAMHS waiting list for 2.5 years and wasnt severe enough to warrant any input?

You never noticed how Mum stopped talking to anyone at school, about anything? You never noticed how mum sat at the back, nearest the door, at school assemblies? You never noticed the bags under Mum's eyes? Until she broke down in the "Way Forwards Meeting" when you told her child must come to school every day because attendance was really important?

So, you never noticed?

Yet you were concerned enough to contact the Multi Agency Safeguarding Hub on a number of occasions that term?

And you could find the time to ring them every other day to ask them for an update?

And you could arrange meetings with professionals but not inform or involve mum because you were "concerned about her mental health?"

So, you saw a silent mum, at the classroom door, every single day. You saw the child for 6.5 hours per day, 5 days a week. But you didn't notice. Until child became too ill to attend school.

Then you found the time to invite yourselves, 2 members of staff at a time, round to my house, my child's safe place, on less than 24hours notice because you needed to do a welfare check.

Yeah, you never noticed...

Well, I'm glad you haven't had to notice the flowers on the grave....

I'm glad that I stopped my child attending school that term. I'm relieved that the Government ordered the schools to shut. I'm glad that my child wasn't classed as vulnerable. I'm glad I am not a key worker. I am glad my child doesn't have an EHCP (yet). I'm glad my child doesn't have a social worker. I'm glad the social worker decided there were "no safeguarding concerns".

I'm glad my child is still alive. I'm glad we can enjoy another day, together.

And you never noticed....

ANONYMOUS

Shared, anonymously with The Author's Permission  

#secretparent

@AutisticGirls_

But they have no problems in School: Autistic Masking The Hidden Trauma of Our Children

Guest blog by Jodie Smitten

As a Post Grad student I have recently submitted a 5000 word assignment on this subject, so I will be attempting to avoid going in quite so deep and stick to the main points…not an easy task when I feel so passionately about this topic!

I know there will be many parents that will read this and learn nothing new. For many children and their families this is their everyday lived experience; feeling misunderstood, trapped, unsupported, and isolated. Alongside this many families are fighting for help for their child who is struggling with mental ill health as a result of masking.

But this piece isn’t aimed at those families, it’s FOR these families. Raising awareness of masking amongst professionals is vital for the mental well-being of our autistic children. The aim is to save children from distress, save children from trauma and save lives.

Masking, also known as social camouflaging is the ‘performance’ put on by an autistic person in order to ‘fit in’ with surrounding people, often by supressing autistic tendencies or hiding the difficulties they experience in the non-autistic world.

So how can this look?

A person who; is suppressing excited jumping and flapping, doesn’t voice the distress caused by the lights being too bright, mimics the fashion, speech and interests of a peer or continues a conversation about football despite being bored senseless! It can look like a child who appears calm and happy all day at school, but the minute they meet the safety of Mum or Dad ‘lift the lid’ of their emotions and spiral into a meltdown, it can be the child who has numerous meltdowns in the morning over socks feeling wrong or hair having too many bumps in it, yet the second they cross through the school gates appears to ‘click into character’ and appear ‘fine’ and maintain that façade for yet another day. 

Now I’m sure many non-autistics reading this may well think ‘well that’s not so unusual, we all do that from time to time’ and yes that’s absolutely correct. But for the autistic person the extent of masking is deeper and more labour intensive than that of the non-autistic. It involves intense focus and holding back what is natural, overriding ALL of one’s true self.

So, why am I so concerned with autistic masking?

Simply put masking hinders autistic life, actually that’s an understatement. It hinders access to assessment and identification, it hinders access to adjustments and support in education and it hinders others (including parents) understanding of a child’s needs and therefore a child won’t have adjustments made in any of their environments. Now if we consider Beardon’s (2019) ‘golden equation’ autism + environment = outcome…… an autistic child with no environmental adjustments or support will not be able to reach potential and the outcome is dismal to say the least.  In short masking causes high levels of stress and exhaustion, autistic burn out and mental health difficulties (Hull, et al., 2017; Cage, Monaco & Newell, 2018).

So if masking is so bad for self, why would anyone do it? Survival is the simplest answer. Protection from being picked on by peers, protection from adults ridiculing, and sometimes from their own parents who know no better. Yes, I’m guilty of trying to insist my child just ‘wears the blinking socks’ before realising she was autistic and wasn’t just being a ‘fuss pot’. Many autistic children learn from an incredibly young age that it’s easier to just try and ‘fit in’ and ‘not make a fuss’ if you don’t want any unwanted negative attention. If I had a pound for every time someone told my 4 year old he ‘needs to get his hair cut’ I would be rich. These aren’t nasty people, these are just fleeting comments to them. Little do they know that he is petrified of having his hair cut and even sitting in the barber’s chair is enough to cause him to shake and drop his bottom lip. Why should he be subjected to that just to ‘fit in’? But sadly for many children the comments and ridicule become too much and they buckle and submit to the ‘norm’. 

So Let me break my concerns about masking down:

Masking hinders assessment and identification

You take your child to the GP, you tell the GP you think your child may have autism, the GP takes a look at your child who is dutifully sat there, asks them a few questions which they answer. The GP then states he needs ‘evidence’ of difficulties in school, (and yes some professionals will still state that if a child is autistic it will ‘show’ in all environments!) The school say they have no ‘issues’ and that your child is fine is school. And there you have it, you can’t even get a referral for the assessment pathway let alone an identification! But let’s pretend you make it that far and your child is offered an assessment, your child is then encouraged into a room with unknown people to answer a set of questions. As these people are unfamiliar to your child and your child is keen to please your child masks, acting perfectly non-autistic. The second you get back to the car your child shuts down or meltdowns from exhaustion. The result; no identification of autism and a distressed child…. brilliant!

Identification of autism is important on so many levels, it is summed up perfectly (and much better than I could write!!) by Zwanenberg

‘As without a diagnosis this can make so many areas of life difficult, distressing and bewildering for the undiagnosed person. This can result in difficult behaviours, social isolation and young people who do not attain their best ability in school. Once diagnosed, the young person can understand themselves better and realise that are not alone in the way they feel. Their parents and the professionals working with them can all learn how best to help them. The right services can be accessed and adaptations can be put into place in the educational setting. A diagnosis can prevent so much distress as the child develops and can stop further psychiatric illnesses developing’

Self- identity and ‘finding your tribe’ are so so important for our autistic children. If a child can find her tribe (those she feels connected and at ease with) then they are not burdened with social differences or a lack of understanding about their needs. Research shows that social ‘deficits’ aren’t apparent between two autistic people! Yes that’s right, the deficit isn’t necessarily a ‘defect’ of the autistic individual but actually the non-autistic person has a deficit in autistic social skills! I am a big advocate for teaching non-autistic people about how autistic prefer to communicate rather than expecting autistics to learn ‘social skills’.

The very sad fact is that often children aren’t actually identified as autistic until that mask drops. The mask becomes too heavy to bear any longer, the long term suppression has caused mental ill health, severe anxiety, incredibly high levels of stress and the mask tumbles dramatically. Your child didn’t make it to the car and had a gigantic meltdown at school, your child couldn’t manage the monstrous amount of energy needed each day to get into school with a smile on their face and they hit a wall and point blank refused to go anymore, your child started to self-harm, your child attempted to take her own life. Even then often children are ‘treated’ using a mental health intervention! You are told its anxiety, depression and your child is prescribed drugs or even worse given a course of CBT! You are told that by keeping her home you are ‘feeding’ her anxiety and that avoidance will only make it worse! This is autistic burnout. If you don’t know about autistic burnout please look it up and read some of the amazing blogs by autistic adults such as Kieran Rose (The Autistic Advocate).

Anyway….. I digress. At this point your child’s autism may be recognised. The problem with this is when identification comes at a point where a child is rock bottom, they can misinterpret symptoms of a secondary mental health condition as autism. This results in many children rejecting their autistic identity and/or despising it. Heppel (2019, pp21) who was identified late in life, described this as ‘I have to separate the autism itself from the wounds that have been inflicted by people over the years- some well-meaning, some not - in response to the way my autism expresses itself’. Positive autistic self-identity is necessary for good mental health, (Cooper, Smith & Russell 2017).

Identification should not and must not be based on outward struggles. Masking must be understood by all, parents themselves but also the gatekeepers to assessments (Teachers, SENCo’s, GPs, health visitors etc.) and those that assess for autism. The Lorna Wing centre do autism assessments that last all day, during breaks when away from unfamiliar eyes the child is being observed. As a child is in clinic all day it is likely that by the end of the day the mask can slip. This gives the clinicians a good opportunity to witness a child unmasked. Equally during my daughter’s assessment we ensured that she was as comfortable as possible. The clinicians had details of my daughter’s special interests which they used to engage her and make her feel at ease. My daughter had seen pictures of the clinicians and she met them in a familiar and known place. The assessment was conversational in style and she doodled as she talked and showed them pictures of her pets. She was made to feel comfortable enough to un- mask and speak her truths. These clinicians heard about aspects of my daughter’s inner world that even I wasn’t aware of!

Parent blaming

Ok so your child is ‘perfect’ at school, but at home you have a child who is distressed, explosive and seems unable to control their anger.  This is the Jekyll and Hyde phenomenon (Attwood, 2009). When you approach school they are shocked by the child you are describing, when you speak with the GP they too don’t believe that the child sat still and quiet in their surgery can be the same one you are describing. Not only that, but because they behave well at school, the issue must lie at home……with the parents! Parents are advised to go on a parenting course, aimed at teaching parents to have tighter boundaries, be more consistent and regain control! This approach is damaging for an autistic child.

If a parent protests this and makes several visits to the GP, insists on second opinion and fiercely refutes that her child difficulties are down to her parenting and demands autism assessments they are deemed to be trying to ‘label their child’. Or in more extreme case accused of fabricating illness (known as FII, Fabricating or inducing illness). Particularly at risk are autistic parents (including those not identified as autistic).  According to the NHS a child is more at risk of FII if the mother has borderline personality disorder, which a common misdiagnosis associated with autism (Pilling, Baron-Cohen, Megnin-Viggars, Lee, Taylor, 2012). The NICE Guidelines (Child maltreatment: when to suspect maltreatment in under 19’s, 1.2.12) states presentations that may indicate FII, some of which raise concerns if we consider autistic masking, such as ‘symptoms and signs only appear when the parent is present’, ‘reported symptoms are only observed by the parent’. The National Health Service (2019) suggest considering FII when ‘the parent has good medical knowledge’, which considering many autistic parents knowledge of autism will be good, this is a concern. All of these ‘red flags’ could be attributed to a child that masks. Children have been known to be wrongly removed from parents, I know from my role that some parents are fearful of being deemed over anxious and/or neurotic by professionals when they try to fight for their child.

 Masking hinders in school adjustments and support

So without identification and without any signs of difficulty (due to masking) getting adjustments in school can take some fighting (not in all schools, I do work alongside some amazing SENCo’s) but sadly not every child and family has a ‘me’ and not all schools are as aware and supportive.

If your child does have a formal identification of autism, masking can still hinder access to support. Again, if a school doesn’t ‘see’ any unmet need or difficulties and/or the child isn’t causing any disruption or upset to others then why would they (if they aren’t aware of masking that is!). As well as denied adjustments, children are denied access to additional services such as advisory teachers or educational psychologists (that schools are gatekeepers to).

In my role I have witnessed schools having the attitude ‘we can’t refer because we don’t have any issues’, ‘she’s fine here so it’s the parent’s problem’ and ‘we don’t actually believe she has autism’.

I truly believe that every autistic child should have a support plan. This should be developed in collaboration with parents, the child and a trusted adult in school. This should be based on a child’s differences, difficulties and presentation in ALL settings and not purely based on how they appear in school.

Without this a child that masks will burnout. Very often these children become our school refuses and develop mental ill health. Once a child hits that wall and refuses or becomes burnt out its incredibly difficult for them to return. Trust is lost, trauma is long lasting and recharge is a long process. The support has to be there from the beginning. Success from the start, not intervene when things start to fail.

And finally…….

Ok so other than poor self-identity due to delayed assessment and/or identification, lack of understanding of self, no tribe, unmet needs in school, autistic burnout, inappropriate parental responses to needs or parents being deemed neurotic the other factor that risks the mental health of an autistic child that masks (just in case you needed additional ammunition!!) lies with others mis-perception of a child’s masking behaviour!

I have experienced people who deem masking behaviour as a child being ‘manipulative’.  Implying that the discrepancies in behaviours between settings and between care givers is down to a child trying to ‘get their own way’. This can lead to the mistreatment of a child. I have experienced those who disbelieve parents’ concerns and resent any ‘special’ treatment a child maybe receiving. I reframe ‘manipulation’ as a child ensuring their needs are met to prevent trauma. Poe (2019) writes about a teacher who deemed her manipulative. During her time in secondary school Poe was emotionally abused by this adult to a horrific level due to the teacher’s incorrect beliefs about Poe’s presentation. Professionals having a greater depth of knowledge of masking would increase understanding and encourage a more open dialogue between parents and professionals. 

What else needs to change……

All professionals working with children need to be aware of masking, but not only aware but a deep understanding of the depth of it, the reasons for it and how to support a child in feeling safe enough  to share their inner self.

Our children need to be allowed to say ‘no’ without the fear of punishment or ridicule. How often when a child doesn’t want to kiss grandma or share with a friend do we insist or persecute them for going against others wishes. How can our children learn the essential self-care needed to manage being autistic in a non-autistic world if we don’t teach them to say ‘no’ when it all feels too much! As an adult people often preach ‘self-care’ to me, I don’t even what my own self-care looks like! We have to advocate and teach our children this through validating and accepting when they express themselves.

Behaviour policies in schools go against self-advocacy. Many children I have met have a deep fear or phobia of being singled out or told off in school, therefore they will stick to the rules even if this is to their own detriment. Just recently I read a school policy that insisted children showed ‘good listening behaviour’ this involved sitting still, looking at the teacher and hands on laps! I work with many incredibly bright and able children, yet if they are required to follow through with these 3 demands they have little mental energy left to actually process what is being said to them. Yet they are too scared to act out their natural neurology of fiddling and looking away from people while concentrating as this will result in being seen to ‘break the rules’ or being ‘naughty’ with terrifying implications i.e. being told off.

The Sunflower lanyard has been helpful on our journey, my daughter uses hers and feels that when wearing it people don’t judge her negatively for her differences. She feels it offers her a green card to act herself. Autistic behaviours needs to be understood and accepted, the responsibility lies with every adult. Educate your children, educate yourself! All children should be taught specifically about difference. Diversity makes up the amazingly rich tapestry of life and of humans. No child should feel less for who they are, no child should be denied identification and expression of their true self.

A bit about me!

I am a parent to 3 children, 2 goats, 6 hens, a gecko and a dog.

I am also an independent autism specialist based in Wiltshire. I support families on their autism journey from assessment, identification, advocating for school adjustments, advising on parenting approaches and supporting the emotional literacy of autistic children. I also offer training to schools. Working alongside families on their journey is an absolute privilege. Every child I meet teaches me something new. Autism is my special interest and I am passionate about my role.

Jodie

jodie.smitten@behaviourservices.co.uk

https://m.facebook.com/Childrens-Behaviour-Support-Wiltshire-606003673066792/?ref=bookmarks

The A Word

A guest blog post by Joe James

'Autism – a lifelong, developmental disability that affects how a person communicates and relates to other people and how they experience the world around them' (The National autistic society)

Where do I begin?

Well for a start I completely and utterly disagree with this statement. In fact I disagree with it so strongly that I wrote a letter of complaint to the NAS about how their generalisation of an Autistic individual is not only insulting, but damaging to us. They wrote back (Eventually) apologising but refusing to change it on the grounds that people need it to be classed as a disability so they can claim help from the government and possibly support payments. Where I agree that many people on the spectrum do need additional support, not all do and therefore it should not be classed as a disability. It should be classed as a different ability that comes with its own set of challenges. Life is a challenge for most people if not all people. But we don’t class everyone as being the same ability wise, so why class all Autistics the same? It’s just wrong in my opinion. We should be given the rights as a minority within the workplace instead.

This is why it’s bad. Imagine you are going for a job. You have a degree that you worked tirelessly for. It was so hard getting through the educational system because of how you were treated. You fought for your rights to be treated equally and you never gave up. You may not have been particularly social, but you studied and excelled at your subject, which is the only thing that should matter. You are smart, very smart. You know that given the right opportunity you will prove your worth and show your employer that not only can you do the job they require of you, but due to the way you can hyper focus and micro analyse, you will most likely do the job better than the average person. You do well in your interview. It was a little awkward at times (or it was in your head) but overall the interviewer was smiling and seemed pleased with your credentials and knowledge about the potential job. You masked brilliantly and though it was difficult, you did a great job. You go home full of hope and eagerly anticipating a phone call to confirm your new employment.

After you leave, the interviewer looks again over your resume. She notices that under disabilities you have written N/A (non applicable) she then looks under your set of skills. You have written Autistic, then listed all the reasons why that is a skill. She then googles the words, What is Autism? She is directed to the NAS website with the above statement staring her blankly in the face. This is a stumbling point for her. She thinks that perhaps you have made a mistake. She feels for you but knows that hiring a disabled person comes with issues. It shouldn’t, but realistically it does. She already has several disabled people working for her. She then looks through other resumes and decides to go with someone else. She really liked you, but autism is complicated and she doesn’t need that right now. She is torn up about it, but that doesn’t help you.

This is the reality of the situation that many autistic adults find themselves in. They are genuinely worried about telling a potential employer that they are Autistic. This is so wrong, they should be excited at the thought of having someone in their ranks that can think outside the box. A brilliant problem solver or a vigilant eye for details that others miss. It would be an asset to have someone with a brain like Einstein, Darwin, Jobs, Newton and Tesla. But no, we are ALL disabled and are defined by our communication skills, not our amazing brains and extraordinary abilities.

This is how I think now, but like many people, 7 years ago I didn’t know or care about autism. To me it was kids sitting in a room, having crazy temper tantrums and smashing things. It was weird people that couldn’t look you in the eye and moved around strangely. It was non verbal children that couldn’t tell their parents they loved them. I felt sorry for them, I felt even more sorry for their parents. I couldn’t see past what the medical profession and the media portrayed. I was convinced that autism was a disorder or disability and no one would change my mind. How narrow minded and wrong I was.

6 years ago things changed. My wife and I were watching a TV show. There was a little boy and he was being diagnosed with Aspergers. The show was all about whether a child was born with difficulties or whether it was down to their upbringing. In was obvious to me that the child was born like this and it turned out to be the case. Sylvia pointed out during the show that the boy was just like me. I have told Sylvia many stories of my troubled childhood and the difficulties I had making and keeping friends. She had lived with me and known me since I was 18 and we had struggled socially due to my outspoken behaviour and honest evaluation of people. I am highly intelligent and had always put my problems down to this fact. I had never thought that I was disabled. I likened myself to Sherlock Holmes or Gregory House and sometimes Sheldon Cooper. These fictional characters where all highly intelligent people who struggled socially and their struggles resonated with me. I looked at Sylvia like she had insulted me. “I don’t have Aspergers” I said. “Well rewind it and watch it again, listen to the kid described his life and his friendships at school. Watch him play with his Lego and monologue about why he likes it. That’s what you do when you are obsessed with something” she said. I rolled my eyes, but played along with her silly nonsense. I watched carefully and with a new perspective and what I saw changed my life forever. She was right, that little boy was me. It was suddenly like watching a movie about myself, but he had nice parents. Tears welled up in my eyes and memories flooded back of terrible days at school and being ostracized and bullied. Kids not wanting to play with me and friends betraying me to be popular. It was like a light had been switched on in my head and my whole life suddenly made sense. All this time, all those struggles and confusion. Why I never fit in, why I lost my temper so easily some times, why people didn’t understand where I was coming from and why I was so obsessed with things that I became interested in. Of course I saw it as a negative, but also as a relief. I finally could explain to People why I acted the way I did. There was something wrong with me, it wasn’t my fault.

Months later I was diagnosed officially and started telling everyone I knew that I had Aspergers and that is why I was so annoying. They said things like “I always knew there was something wrong with you" or “I don’t think you do have it, as you can talk fine”. “You don’t look disabled” was my least favourite. But I just accepted this and almost apologised for being broken. I, like many other Autistics, saw it as something that I had, like a disease or condition. At one point when I was studying Autism I had an identity crises, where I couldn’t separate my autism from myself. I didn’t know what part of me was my autism and what part was Joe. How could something that I have, be so entangled and embedded to who I was. I went through a stage when I just said “I’m not going to be Autistic anymore” like it was something I could leave by the door when I went out. I denied it and I hated it. I saw it as the cause of all my problems and the reason I had no friends. For years I struggled to come to terms with this thing that lived inside me. Making me angry, anxious, depressed, aggressive, over sensitive and easily distracted. I could only see the bad and eventually in 2018 my mental health collapsed and I regressed into full blown depression. I had made a mistake at work and blamed my autism, my work blamed it and I was determined to push it away at all costs. The more I fought it, the more I hated myself. I changed so much about myself that year, many didn’t even recognize the person I had become. I lost allot of weight and looked the best I had ever looked. I worked so hard and my boss was so impressed with me. I really worked on my temper and was so much more relaxed and easy going. I took up photography to help me keep balanced. It seemed to help me keep calm and did make me very happy. But alas, my Autism was still there and still affecting friendships. I wanted to tear it out of my head, I hated autism and that was where I was going wrong. In early 2019 I was seeking professional help through Time to talk. I had called the number but wasn’t even able to leave a message as the in box was full. It seems there are a lot of people needing help and I was just one of them. I continued with my photography and even started posting on Facebook. In 2018 I posted on Instagram, but this only made me upset as I judged every photo by how many likes it got. I became obsessed with it and would often not be able to focus on other things at home because I was constantly checking and refreshing the app. I was hyper focusing on this social and public scrutiny of my work and it made things so much worse. But Facebook (for me) was different. I posted on an amateur photographer group and my first photo was a success. So I posted another and another and before I knew it I was again apologising for being autistic and saying sorry for posting so many photos. That’s when something strange happened. People in the group were nice to me and said they loved my photos. It was then suggested that I post on Memories of Horsham, so I did. They also loved it and I explained I am autistic, so they would be ok with me posting lots of photos. This was hard for me, but things often are, so I just went for it. Of course I received some criticism, but overall the comments were very positive. It was then suggested that I start my own Facebook page so people could see all my photos. I started using the platform to talk about being autistic and all of a sudden I was giving people advice and hope for the future. Just by being me, I helped people. I stopped saying a “had" autism and embraced it as being part of me and not something I have to live with. I saw how being autistic was the reason I could take amazing photos and had learned how to do it so quickly. I was focusing on all the good things being autistic gave to me. Like hyper sensory issues. They were not issues when I was in the countryside surrounded by nature and beauty. They enhanced my experience of the world around me and I could share and explain this to others. I started a group called positively autistic and encouraged others to see the good side of autism. I fought my corner against negative people, stuck in their ways and hoped one day they would see what I saw and loved themselves, autistic brain and all. Because I accepted myself and embraced being autistic, my mental health was manageable and most of the time in a good place.

Being autistic is not a label for me. It is not a definition or a statement. It is who I am and the minority I am part of. It is my tribe, my people and in many cases my friends. It is an enhancement but also a struggle. It is badly underestimated and treated like a disease. It is wrongly depicted and unfairly defined by the medical profession. It is stereotyped and mocked by the media and it is shamefully misunderstood and mistreated within the educational system. It is looked upon as something that is wrong with me and rarely thought of as a benefit to the human race. But without us this world would be a very different and far worse off place. It is not the Autistic people that wage wars over land and greed and power. We are the scientists, the inventors, the experts, the artists, the computer programmers, the musicians and the puzzle solvers. We are the world changers and yet the world won’t change for us. With this in mind, I fully encourage those of you who agree with me, to write your own email to the NAS and demand they change their definition of what we are, considering we never gave our consent to this misrepresentation, because we were never asked or consulted. The only people that can define Autism is autistic people. That is our right, but we have been robbed of it.

My final thought is this. Many autistic people are trapped. Trapped inside their exceptional minds, unable to communicate, unable to function without assistance. They are lost and it pains me to be so helpless and unable to find them. But so many, in fact the majority of us are not lost, we are just very alone and if you can, please guide us. Sylvia was and still is my lighthouse. She guides me everyday to the safety of the shore. Sherlock needed Watson and House needed Wilson. Every Neuro diverse person needs a Neuro typical by their side. But every Neuro typical benefits from an autistic person who has reached their potential. It’s a symbiotic relationship between people who are very different but deep down, just the same. Be kind and love yourself. Being autistic is who we are, embrace it and you will be free to become the person you were destined to be.

Thank you for your time. 

Joe James

https://www.facebook.com/JoeJamesNeurodiversityawareness/

Carer or career?

Guest blog from Jodie Isitt

It started late on night, you know those nights when everyone is asleep but you daren't close your eyes because as soon as you do someone WILL wake up screaming. Life as a carer for three autistic children was busy and oh so tiring, but in those days I was surviving on a couple of hours sleep a night and pushing my body daily to meet the caring needs of my children whilst attending hundreds of appointments a year! Was this it? Was I destined to be a carer for my children all of my life? Would I spend my days researching new conditions, learning sen law and attending umpteen IEP meetings a month? I loved working, I have been a career girl all my life, starting out in catering and following the birth of my children becoming the accounts manager in my family building business. I was good at it. I enjoyed it. I love learning new things. Unfortunately due to the extensive health needs of my family and becoming increasingly unwell myself through exhaustion and stress I had to stop working. It was too much. It consumed me. To be honest if I had been employed by anyone other than my own family business I wouldn’t have lasted that long at all. Pretty sure I had become unemployable due to the time I needed to take off work just to simply attend meetings and see the children’s psychologists. It was a full time job and one that paid lousy! Carers allowance was something like £62.00 and I was working over 300 hours per week! Okay okay there aren’t 300 hours in a week, but when you’re a parent of three autistic children and a disabled fiancée there sure as hell needs to be because I was fitting in 300 hours of stuff in a week that only has 168 hours. Parents like myself are saving the government thousands with their caring - but alas that’s another post for another day way in the future. So there I was, tossing and turning unable to switch off and in that instant when everything was quiet just the soft sound of the trees blowing in the wind, my daughters 18 bubble lamps and youtube ocean music playing on repeat I had a brainwave. For months I had been on-line actively advocating for people to learn more about autism, speaking to adults, trying to make them understand, hell even some family members didn’t quite ‘get-it’ Advocating for understanding and acceptance and I realised that when I was a child I was NEVER taught about disabilities. Disabled people scared me, unnerved me, and made me anxious. I didn’t know what they were thinking, were they violent, why were they behaving in this unsociable manner? What was wrong with them? It wasn’t until I had my children that I fully understood disabilities as a whole and teaching myself everything I needed to know about them I could finally accept them for who they were. We don’t need to teach adults about autism, or disabilities or neurological conditions. We NEED to start teaching children. Thats where it will count. Incorporating awareness into their daily routine would be invaluable for generations to come. Creating the most understanding, diverse, accepting and kind individuals of the future would change the lives of millions of disabled people and what better way to do that than through storytelling using the most cutest and relatable of characters. A journey through mainstream school, using my daughter Lola as inspiration I developed the next children’s book series designed to help children understand and accept differences in the classroom. Drawing on her own experiences and her own difficulties I have written four children books using a Badger as one of Lola’s trusted friends to give the children the tools they need in order to be a kind and helpful friend to someone less like themselves without compromising their own wellbeing in the process. The books were primarily designed and written for children who don’t have neurological condition, a social story for the ‘normal’ child some might say, however following the amazing reviews and feedback from hundreds of customers its clear to me that they are more than that. They are a double whammy! They are not only helping children understand and accept other children. They are helping children understand and accept themselves. One child’s mum reports that she wore her ear defenders to school for the first time in months and was proud to be like Lola Rabbit. Another describes her child wanting to dress up, spending ages choosing an outfit complete with hair bow to look exactly like her. Some children have opened to their parents and admitted they felt like Lola, lonely and scared of the noise. Giving parents the opportunity to finally realise what kinds of things they were struggling with in the school environment. I am so excited about this project, and I cannot wait to release the second book - Lola’s wobbly lunch time where Lola gets very stressed out during lunch time and has a breakdown in the lunch hall describing the smells and sounds and the extreme busyness of the lunch hall dev

Additionally and because I'm not 'professional' I asked expert speech pathologist Molly Dresner and Occupational Therapist Lucy Bates to contribute in the book and they have done amazing job at explaining the difficulties and giving teachers and parents ideas on how to help children should they present like Lola Rabbit. This is a very unique addition to children's books and I am super proud and honoured to be able to bring these books to schools and homes near you!

Jodie x

Autism with love publishing

About masking autism and why I think we should think past it

Guest blog post by Rachel Tenacious

This morning as often happens I saw a poster/meme about masking and what do we know about it. People are so much more knowledgeable about this part of many people's autism but yet we don’t seem to be moving forward in solving the problems caused by it.

These are just my thoughts as an autistic person who "masks" and the parent of an autistic person who "masks".

The thing is I don’t actually believe H does mask, I can see the struggles, the stress, the anxiety but often others can't, won't, don't!

I think we need to move beyond thinking about masking as a thing and look at the way we view the person we are thinking about:

Does the person have a diagnosis of autism?

What do we know about them?

Have we been told what signs of stress to look out for?

If the answer to my first question is yes then I want you to stop thinking about that person in terms of masking and start thinking about what you can do to support them.

My point is that all people with autism need support in school, at work etc whether they mask or not and by saying we can’t help them because they are masking is the same as blaming them for not asking for help.

I have a perfect although hopefully extreme example of where schools can make a critical error in terms of supporting a child with autism. My child's school didn’t support our appeal for her to be statemented in fact they were adamant that she was "fine" in school and to prove their point they made a video of H doing drama!

The video showed H rocking from foot to foot while standing in a circle of other children, twisting her hands, licking her lips and rubbing her face with the sleeve of her jumper [something which had caused her to draw blood in the past, you wouldn't believe the harm that can be done by acrylic, luckily we were able to buy 100% cotton jumpers for this school]. Yet H was taking part in in the lesson and was engaged. Apparently that was enough for the school. It wasn’t for us and thankfully not for the tribunal either who didn't view the video on the day of the hearing but had clearly watched it and had also noted the clear evidence of anxiety.

Sharing and understanding information about what anxiety looks like in each individual with autism or suspected autism is massively important. So many of our children are being failed by the system, the stats for the number of autistic people out of school or work make very depressing reading and yet with some simple skills eg listening and looking carefully there could be a way forward.

I have seen evidence that this is possible, H after three years of home ed to recover from the trauma suffered in school has tentatively dipped a toe into the world of college. She is doing eight hours a week and has a 1:1 LSA. This LSA has already shown after seven sessions that she is intuitive enough to spot the signs of stress in H. Yes it was subtle, shuffling around in her chair, sighing, pulling at her t shirt but it was noticed. The LSA was uncertain what action to take but that doesn’t matter at this time, its very early days and no one knows what action to take really. The fact is that by coming and telling me at the end of the session that there had been a noticeable difference in body language I was able to get some more detail later on on the evening and can begin to help to solve the problem [which turned out to be a noisy fan on a laptop that was preventing H from being invisible and which she has become hyper focussed on.] In the old days that would have been missed and H would have quite likely school refused the next day but here we are well on the way to fixing the fan and at any rate talking about other options.

It is so important to me that we stop almost blaming these children, young people and adults for not letting us see how much they are struggling. They do this because they want to fit in, they want to do well and its hard work. We need to give them permission to receive help, we need to help them to understand that being helped is a positive thing and that they don’t need to hide their autism anymore.

 Rachel Tenacious 

[A little bit about me, I am a late diagnosed autistic parent with three children aged between 30 and 16. H is my youngest child she was diagnosed with autism at age 9 and selective mutism at 15.

We removed H from the education system in 2015 after she had what we now know as an autistic burn-out.

The school system didn’t suit H at all but home ed has been amazing.

Since my diagnosis I have begun to share some of our experiences at support groups and am hoping to expand this out to schools, colleges and anywhere people want to hear me really.]

Research: Autism and the sisterly bond

As the youngest of three siblings, with two older brothers I have been fascinated with how siblings interact. Playing with dolls and making up stories was my rest from running around the garden covered in mud with my brothers. During these hours I often wondered what it would be like to have a sister. Would we argue over toys and clothes, or would we share everything and get along perfectly? If our personalities were fundamentally different, would that make things easier or add another difficulty to the relationship?

This is what I have been investigating in my current research. Previous research has stated that sisters- when one has autism- have a more positive bond than a brother-sister or brother-brother pairs.  In my project ‘Understanding the experiences of sisters when one has Autism Spectrum Disorder’ I aim to hear the stories of sisters who have been effected by autism in one way or another, to gain an understanding of what may influence their relationship. Ultimately, I hope that this will add to the understanding of autism and sibling relationships and perhaps one day be used to improve the bond between siblings when one has autism.

Much of the current research focuses on the parent-child bond or the parent’s experiences. But the sibling relationship is often the longest relationship we will have in our lifetime, and it is so often overlooked in research and life in general. Furthermore, I would like to understand this research question from the perspective of the autistic sister to learn both sides of this fascinating bond.

I have already interviewed a number of neurotypical women who have an autistic sister. And I am now looking for autistic females who have a sister! Participants must be female, over the age of 16, have a diagnosis of ASD and have at least one sister.  If you, or anyone you know, are eligible and interested in being a part of this novel research, please get in touch with me at fhd1g14@soton.ac.uk

Participation will include one interview which will last no more than an hour- this can be done over the phone, skype or in person. Interviews will be recorded, transcribed and anonymised. Although some quotes may be used in the write up of the report, there will be no way of linking them back to you.  

I am hoping to have this research published in an academic journal and I would greatly appreciate any help in achieving this. Whether it is taking part or passing this on to anyone who may be interested.

Thanks for reading!

Ffion Davies

University of Southampton

More Than Words: a 10 week course for parents of pre-school children with ASD/Social communication difficulties

Team work makes it so much easier...... the A Team!

On Tuesday I went to see a little girl aged 4 years at home, who I'll call 'A'. This time last year, she was at the 'own agenda' stage of development where she didn't really see the point of communication. Her attention span was extremely short and she was more interested in my bangle than me. I couldn't see any verbal understanding. Her only expression was echolalia.

This week, we have a bright, little girl who will be starting school in September: she has a developing attention span, can understand  short instructions, uses language to get what she needs and to express herself. She can even tell you what she doesn't want very vocally! Her social interaction is developing well with children and adults. She now has a diagnosis of ASD. The only thing I'm worried about now is that she will be overlooked as she is so well behaved. 

Is this a miracle? Yes in a way it is, but it's actually the result of fantastic team work. At the centre is a parent who has done absolutely everything suggested, even when that meant making life harder for herself e.g. as part of getting A from 'own-agenda' to the next stage there was no helping herself to chocolate, she had to request a piece at a time, which was in a clear plastic box which she couldn't open on her own. As you can imagine, A wasn't happy!

• The key worker/SENCO who had worked tirelessly to achieve all the targets set, 
• The nursery who allowed it to happen
• The extremely knowledgeable, Early Years Advisor who co-ordinated everyone
• The lovely and very patient, NHS SLT who reviewed, set targets and saw as often as she could
• An excellent paediatrician who recognises ASD in girls
• me: I've worked through individual coaching for More Than Words and then worked on components of language and communication.

We've all worked together for the good of A. Well done to the A team! :-)

www.private-speech-therapy.co.uk

0844 704 5888

office@smalltalk-ltd.co.uk

Calling Staffordshire Parents of pre-school children with social communication difficulties!!

We're delighted to be able to run Hanen's More Than Words for parents with pre-children with social communication difficulties, ASD or ASD tendancies? It's  free of charge for parents or professionals from staffordshire http://www.hanen.org/Programs/For-Parents/More-Than-Words.aspx

We really like this course as it empowers parents to use everyday routines, play, toys and songs at home/out and about. Forget the worksheets and flashcards, this shows you how to use real situations to develop real communication. We learn language best in functional situations and if you have trouble generalising, then its got to be in everyday real-life situations.

Thursday 5th November at Uttoxeter Fire Station 7-8.30 pm

Monday January 11th Chase Terrace Fire Station 7-8.30 pm

Landywood Chidren's Centre, Gt Wyrley Wednesday 13th January 6.30-8.00. 

Courses run for 10 weeks. 

Just turn up on the first session or email info@smalltalk-ltd.co.uk to book a place. If you need any more information, just let me know.

A story about Autism by Luke ....and my brother is called Tomas

Author and illustrator Egle Gelaziute-Petrauskiene has written a lovely book about her son Tomas who has ASD. I thought you'd like to hear the story behind the book............

It was October 2006 when we moved to the Midlands  - Tomas and Lukas were two and four – Lukas started at nursery – me and Tomas started visiting play groups, started making friends. Tomas learned some English words, few names and also to sing happy birthday‘

We visited places, and then winter came with viruses and ears infections, temperatures and medicines ... lots of crying and sleepless nights.  – In  spring we noticed that Tomas made no progress in any areas. It was June we were asking him repeatedly ,what colour are your socks?‘- which was red‘and it took twenty repetitions to get any answer from him. He did not want to answer. Just ignored . He did not wanted to look at what we showed. To say his name – he wanted to play with sharp knifes and empty bottles. Kept walking around repeating same phrases 'tom tom put bottle' . And then all the questions we asked ourselves – why he is so cry baby in public places, why he does not ask questions, why he is happy just be left alone, why he is so clingy, why he does not want to play on slides and climbing frames any more, why he is scared to death of shower and bath and stairs, why he does not like listening to story books, why he does not play with toys just building towers from everything? 

It takes time to realise that you need to look for help, especially when you think you have an ordinary child – that disorder is so difficult to spot, to believe to and understand – your autistic child looks quite normal one day, then tomorrow you think, no, something is not right‘ – and next day he does something bright again, it is not visible, it is not even clear at the start – it took us till Christmas to phone the health visitor to share concerns... Tomas lost most of his previously-had speech when he was three and half. And got the diagnosis 'working diagnosis of autistic spectrum disorders‘ next spring. He was most severe one from that small group of kids who went for assessment together – he could not even put any simple puzzle together nor sit still for a minute. Constantly on the move with no purpose. Autism  is a vast spectrum and Tomas is somewhat near the bad end, but it takes years to accept it. It takes lots of energy to swallow it and try to  find ways to help, as no proper help is readily available. We new only very little about autism at all, almost nothing, so had to read and find out what to do.  We had to rule out all treatments advertised on line – dolphin therapies and food therapies, food supplements made from see weeds and so on. And it is everyday life to cope with tantrums and eating nothing, door banging, no sleep, poor sleep. It took few years to accept that most likely he will be like that. That's how he is. And we love him even more.

This book I wrote when Tomas was about seven, Lukas friends used to come round or play in garden and stay for tea, we had to meet other kids in school summer fairs, outings, parks – I realised it is not  clear for kids, not even for adults, as if it would have been to me before Tomas why is that – why he is screaming and shouting, why he is eating so strangely and why he is allowed to do that, why we cant accept invite to party in swimming pool, why mum looks too tired – all that.  Autism  is invisible disability.  You have to explain a lot. Why why  why? When he will talk ? Will he grow up and will be normal? In the book i tried to explain things through Lukas point of view – using simple words and lots of illustrations.  About everyday life. That's it- we live with Tomas and life is a bit different because of that. We do not know what future holds for him and us, but no one knows. So I just hope that this book will be helpful and will give more understanding about families affected by autism.

 We also rise money from this book  for NAS Stafford branch and, as this playgroup was the place were we could turn for advice- they try to find whats around and having opportunity to meet other families in same situation is priceless. No judging looks at your child there too.

And yes, if you see a child in the park running quickly to you to fetch your bottle of drink paying no attention to any protests (and mum running after him) that might be someone just  like Tomas. Be patient, be aware that autistic kids and they families exist, and they go to parks too..and they try their best to behave! Do not tell them off.

Tomas mum,  Egle Gelaziute-Petrauskiene

This book will be available from our new website when it launches next week www.speechtherapyactivties.co.uk