Wednesday, 16 January 2019

What Teachers Need to Know About Teaching Children on the Autism Spectrum

When teachers view the behaviour of children on the autism spectrum through typical lenses, their view is often distorted. To teach children with autism you need to know autism inside and out to have the clarity that allows you to teach children the way they learn, to interpret what the child is communicating and to respond appropriately. Here are some helpful hints and tips to help school life be a more comfortable experience for the teachers, the child and the class.

1. The most important work thing is to build trust. Without that, they may be too anxious to do what is asked, Make every effort to win them over e.g. take notice of what they like or is important to them. Dinosaurs, space, Minecraft, learn about them so you have something to talk to them about and often use it to your advantage.

2. Many teachers have told me, they cannot give a child support because it would be unfair to the other children in the class. Explain to the class about autism and the extra help an autistic child needs to allow their other children to help support. This will teach the other children about autism, compassion and patience.

3. Never label a child’s behaviour “naughty,” “difficult,” “oppositional” or “rude.” You may not know the cause of the behaviour but if you understand autism and the child you can often work it out. If not observe, do an ABC chart this will provide you with vital information. There is always a reason behind the behaviour you just need to be patient and work it out.

4. Acknowledge the parents who have been raising their autistic child as knowing their child better than you do.

5. Find opportunities to raise the child’s stature in the classroom and the school. Is he great at magic? Let’s do a magic show! Is he an expert on dinosaurs? Let’s create an incredible dinosaur station and he can be the curator! He’s a great reader? Let him read stories out loud for the class

 6. The autism-related difficulties are not parenting issues. Autism is a pervasive development disorder, and that means autistic students may have some differences in every area of functioning across the curriculum. Executive functioning is often a weakness so try find other ways to help the child. E.G. visual representations.

7.Children with autism need patience and understanding. Give them that.

8. Teach children with autism the way they learn often this is visually.

9. If the child is having a difficult time, don’t insinuate or suggest there are problems in the home. Parents need my understanding and support, they have their child 24/7 and are often very stressed.

10.Celebrate the successes and the attempts and teach to the gaps in understanding and skill without directly pointing out mistakes. Demonstrate, model and practice until they get it.

11. I know that a lifetime of being corrected makes a child afraid to take a risk. Therefore, create safe and supportive environments where risk-taking is applauded. Let the children know that as an adult you get nervous taking chances, too!

12. If an autistic child tells you they are being bullied, believe them and act on their information. Sometimes they may feel they are being bullied when it is not bullying, explain it to the child with autism help them understand.

13. Many children with autism are tired — of course they are! A number of them have sleep disorders. They can’t settle down until late into the night. The diurnal rhythms of these children can be off by three to four hours, so they may be awake until well past midnight. If they are awake so late, it is no wonder they can be very groggy in the morning. Mornings can be tough on them, so watch what see what they are like first thing in the day. In the a.m., prepare lesson plans with preferred and alerting activities for those who need the extra time to be fully awake.

14.They often have slow processing speed. So, know that rushing a child who takes 20 seconds to process what you have said will literally slow him down and potentially make him anxious.

15. Autistic children may need help with organising, prioritising, managing their emotions, being flexible in their thinking, starting their work, coming up with ideas, remembering, and managing their time. These are brain-based differences. This is executive dysfunction. If you want a child to learn these things, you have to teach, not chastise and dictate what they need to do, but demonstrate the value of these skills so they master them.

16. I know stimming helps some of these children focus, regulate and/or manage anxiety. Never, shame or humiliate them by calling attention to their stim and insist they stop because they are bothering their classmates. Look for other ways they can do their stimming that is not disruptive. However, if this has been discussed with the class, I have found the children to be understanding and helpful towards the child.

17. If a child believes in themselves, they can do anything. Create opportunities for them to see their potential, and for peers to see it, too.

18. Consider the reality of anxiety. All roads can lead there: bullying, sensory overload, social alienation, slow processing speed, volumes of homework that seem impossible to keep up with. keep that in mind when creating lessons and homework for the children. Often homework is a bone of contention as they may consider school work to be done in school and home is different. As many do compartmentalise consider allowing them to do their homework at school. Maybe in a lunchtime homework club.

19. Don’t insist the need to look at you in order to pay attention to the lesson. In fact, looking away and doodling may be how they can pay attention. Often, they can look at you or they can listen to you, but not both. honour their sensory needs.

20. It’s hard for children to learn from teachers they do not like. If they like their teacher, they’ll have a good year. If they don’t, they won’t. How you treat the child determines if they like you or not.

21. Many children with autism have empathy — lots of it. Your cat died? He told you a joke to make you laugh because you look sad — not because he is cold and heartless. He may not know how to respond to what he sees or feels. That’s why it’s really important to create social/emotional development goals that can teach autistic children what to do in these situations. Don’t chastise or humiliate them for responding in ways that others feel are inappropriate. If there’s a clear gap in the child’s understanding, it means now we know what we need to teach it to them.

22. Being verbal doesn’t mean ASC children know how to communicate. Autism is a communication disorder, so try to find out what that means to each of your autistic students. Just because they are precociously verbal does not mean they can find the words to say what they need, express what they are feeling or understand all I am asking.

23. Many autistic children must be taught that 93 percent of communication that is nonverbal: facial expressions, tone of voice, body language, context. Work in activities that will help teach them that. These skills are so important in social success. E.g. My dog died the child with autism may laugh and this would cause upset. They are not laughing because they find it funny, they may not know how they should react appropriately. They may even find one of the words funny without understanding the context

24. check in for comprehension, not by asking, “Do you know what to do?” But by saying, “Tell me how you’re going to answer that question, Bobby.” And if Bobby is on the wrong track, don’t tell him he’s wrong, praise him for his effort and keep discussing until he understands.

25. Many people expect nothing of nonverbal autistic children (though many are bright) and too much of our highly verbal autistic children. Try working to understand the strengths and needs of them. I personally have worked with nonverbal children who are highly intelligent and understand exactly what you are saying to them.

26 let them know everyone makes mistakes. I will make mistakes. When I do, I will apologise to the individual children affected.

27. “No” can be a trigger for many children on the spectrum. Try and find a way to make them feel understood, and work hard to find a way to say, “Yes.” “Yes, Johnny. You want to play with the Lego. I will let you do that. First, let’s finish your math, then you’ll play Lego.” Finding another way to say no’ is not ‘giving in’ to bad behaviour. It is being mindful that this child feels less anxious when he or she has some semblance of control over the day, or when engaged in activities they feel comfortable and competent in doing. Use first/then visuals and schedules to help the child see when he can do his favourite things.

28. Be aware the ASC child who is a model student may have frightening meltdowns and express extreme anxiety at home related to the school experience. When social, sensory and academic demands become too much to cope with, the child will let it all out where it is safe to do so: with his family in his house. Give the child 15 minutes at the end of the day with something that relaxes them and helps them cope.

29. Behaviour issues are often a result of lack of training, lack of understanding, and lack of communication issues. Don’t tell parents their child was rocking in his seat, sitting at his desk not doing any work, or looking out the window while I was teaching the class. He has autism. He’ll rock to calm himself. He may not know how to start the work because he forgets the steps or didn’t understand the lesson, and he was looking out the window so he could pay attention to the lesson

30. Don’t wait for things to fall apart before you act being proactive is better than reactive for you, the child and the rest of the class.

31. Many autistic children do not like to be wrong, to be corrected, to be told they missed something, forgot something, or have to edit their work. Break work into small achievable chunks and check in for comprehension every step of the way. Teach the value of making mistakes and let them see you tolerate making a mistake.

MOST OF ALL ENJOY TEACHING THEM THEY HAVE LOVELY SIDES TO THEIR PERSONALITY AND CAN BE A LAUGH.

Collated by Karen Horner
Autism Consultant

Saturday, 8 December 2018

Can your child HEAR speech sounds?


When I see a child who is unable to make (articulate) accurately, the first thing I ask myself is - Can the child hear the speech sound? 
We use lots of different sounds in the English language and for these to be produced correctly children need hear the difference between them first. This is known as phoneme discrimination e.g. Did I say s or sh?
Some children cannot hear the difference between sounds for example:  I may say ‘take a sip’ and they hear it as ‘take a ship’. As you can see, this inability to hear the difference between ‘s’ and ‘sh’ changes the whole meaning of the word they hear!

Why can’t my child hear the sound?
This is a question I am asked a lot. Sometimes it may be due to a hearing problem such as glue ear (Otitis media) either in the past or presently – this is why we always recommend a hearing check. A hearing problem will mean that the child is perceiving the sound differently to us and therefore cannot make the distinction.
 However, there are many children who have perfect hearing but cannot make the distinction, unfortunately there is not a clear answer but it maybe that when they were developing their early speech skills they made an ‘error’ and stored the sound incorrectly.

Sound perception research
Newborn babies can perceive all the speech sounds of the entire world’s languages (about 600 consonants and 200 vowels!!). At about 6 months of age, they start to lose the ability distinguish between many sounds that are not used in their language. So, for example, a child who mainly hears English loses the ability to tell the difference between different types of ‘t’ sound (e.g., a dental /t/ and a retroflex /t/), whereas a child exposed to Urdu would retain this ability.
This phenomenon has been called perceptual narrowing or perceptual reorganisation (Werker et. Al. 2012).

Ideas to support the distinction of sounds
·         Can they tell you which sound you are saying from a choice of 2 or 3?  Younger children often enjoy relating speech sounds to pictures or actions rather than letters, e.g. Using the Jolly Phonics pictures and saying “s” when you see the snake. 
·         Ask the child to clap, bang a drum or press a buzzer when they hear a specific sound e.g. “we are going to listen for ssssss, hit the drum when you hear sssss” proceed to say a sequence of speech sounds including the target. E.g. ‘t, sh, s, m, k’.
o   If they don’t hear it repeat and say ‘I heard sss, we need to hit the drum!’
o   You can provide them with a picture card so the child can remember what sound they are listening for.
·         Expose the child to the sound as much as possible!

Remember!
In these games you are focusing on the sounds, not the letters e.g. kite and carrot begin with the same sound even though they are different letters.

Sophie Harding

Speech and Language Therapist 
BSc (Hons) MRCSLT MHCPC PROMPT-Trained

(Werker, J.F., Yeung, H.H., & Yoshida, K. (2012). How do infants become native speech perception experts? Current Directions in Psychological Science, 21(4), 221-226.)

Monday, 26 November 2018

How Reading to Cats Can Help Your Child Develop Confidence


Guest blog post by Emily Cline


You've got brains in your head
You've got feet in your shoes
You can steer yourself any
Direction you choose!

- Dr. Seuss, The Cat in the Hat

Do you remember what it was like learning to read? Your early experiences of learning how words are written and spoken may have been with a parent or a sibling. Later on, you may have participated in group activities in school. You may have found it easy or you may have found it hard and that you needed some support.

Do you also remember the bond you had with a family pet when you were a child? A family cat or dog is often, in a sense, a child’s first friend. They learn to how to interact with another living being. They also get their first taste of unconditional love, friendship, and companionship. You may have spent hours in each other’s company, happy to just “be”.

When you are learning to read, doing so by speaking out loud what you are seeing on the page helps with your learning. But it can also be a daunting and intimidating experience! How people respond to what they hear you say can make or break your confidence – big time! When you’re taking your first baby steps developing confidence is vital. The same goes for reading and speaking the written word, a non-judgmental response helps build confidence.

Enter the cat for confidence!
Cats and kids – Dr. Seuss got it. So did the creators of classics such as Slinky Malinki and Puss in Boots. Many children have a natural empathy and bond with cats. They will often both connect, curled up in the corner, in their own world together.

For kids learning to read, the act of reading to a cat can help with developing the much-needed confidence to continue. This is especially kids who are not strong readers. There’s just quiet acceptance of what’s being said and no judgment at all. Reading aloud to a cat (or dog) gives kids a safe environment to practice this skill in their own time and without interruption. Aside from the cat that wants to sleep on the book, of course!

How reading with a cat is clever!
Reading to a cat is a confidence booster. It is also a clever strategy to help kids with both literacy and life skills in many ways. How so?

Self-confidence
One of the ways we learn how to become self-reliant is by making our own choices and decisions. A child reading to a cat, who has been able to decide on the book they will read, has taken one step to learn to be self-reliant.

Another way to learn is to make mistakes. As a child read aloud to their feline company, they may stutter and stumble over words. With an unbiased feline audience, they can self-correct unselfconsciously in their own time.

Practice makes “perfect”
When you are learning to read repeated letters, words and phrases gradually build your skills. Learn anything through repetition, and after a while, the skill or behavior becomes second nature. Reading fluency is one of those areas that benefit from patience and practice.

Many kids have a favorite story that they like to hear over, and over again. If this sounds like your child, they may love to share their favorite story, read by themselves over, and over, to their cat!

Social skills
Given some cats can sleep for up to 16 hours a day, admittedly the time to socialize is limited! However, this means your child begins to understand they may need to consider when it is a good time for both them and their cat to sit down with a book. They are then learning the art of compromise.

The cat alley here goes two ways too. Most cats love the sound of a human voice and being talked to. If they are a cat with a timid nature being read to quietly is a good way for them to spend time and be socialized into the company of people. It’s a win-win.

Cats you can visit

You don’t necessarily need to have a cat in your own home for your child to read to either. There are many organizations that have reading programs for animals. Some are dedicated to the benefits the company of a cat can bring to developing reading skills.

Schools and libraries often run reading programs in conjunction with volunteers from assistance animal groups. These good people will bring in a super kid-friendly feline or two and find a quiet room for the kids and cats to read together.

Many rescue shelters have times when kids can come in to visit and spend time reading to their cats. This very worthwhile activity helps children with reading skills, and with socializing cats waiting for new homes.

Cats you can call your own
If you are considering bringing a cat into your home think about the ages of your kids and their readiness to handle an animal safely. You also need to take into consideration where you live and whether it’s pet-friendly. And don't forget the costs of looking after a cat including their food, vaccinations, and health checks.

Cats are relatively low-maintenance. However, they still need places where they feel safe and comfortable to sleep, eat, and toilet. You will make the day of most cats if they have somewhere where they can get up high, be in a room with a view, and/or have toys to play with!

Cats are not only a popular choice as a family pet; they are also a popular companion for people with emotional support animals. Emotional support animals (ESAs) can be of benefit to people with a range of emotional and psychological conditions as part of a treatment plan.

If you are wondering about ESAs for kids under 18, talk with your child’s own health professional in the first instance. Emotional support animals have been found beneficial for kids with anxiety and autism. But always work with your health provider to establish whether an emotional support animal is a good option for your child’s condition. It is important to know everything about
emotional support animal registration.


Emily Cline


Wednesday, 21 November 2018

Small Talk in Sandwell, Dudley, Walsall, Wolverhampton and Birmingham


We are delighted to welcome a new speech and language therapist to our fabulous team: Denise Bain who can cover Sandwell, Dudley, Walsall, Birmingham and Wolverhampton for both assessment and therapy. We have known Denise for a while now and have been impressed with her positive attitude, desire to learn more and her obvious skills: 

I am Denise Bain, offering the Small Talk Speech and Language Therapy service in Birmingham and its surrounding areas. I am excited to join the Small Talk team and share in their commitment to ‘helping children reach their true potential’. I believe this can be achieved through early intervention, creating environments conducive to learning and individualising interventions to meet specific needs.

I have a degree in BA (Hons) Speech and Language Therapy and qualifications in Linguistics and Early Childhood Development. I am trained in Palin Parent Child Interaction and Camperdown (approaches used with children and young people who stammer).

I am fortunate to have experience working with children, young people and their parents/guardians a range of settings and capacities.

I work with children who find communication challenging or difficult: struggling to understand or use language or speech effectively at home, school or elsewhere.  These children include those with stammers, developmental language disorder, delayed speech, learning disabilities e.g. Down’s Syndrome, and social communication difficulties like those associated with ASD.

I can offer assessments and therapy interventions customised to the needs of child and family. I offer training, support and collaboration with families, teachers and other professionals so that we can work together towards positive outcomes for children with SLCN.

I can also offer pre-school communication groups an early intervention approach that can be utilised in early years settings.

Please don’t hesitate to contact me. I have flexible working hours and I am available in and out of term time.

Denise Bain




Sunday, 4 November 2018

My saddest case: helpless 10 year old child with ASD/PDA/ADHD

The story of Bethany has been in the news recently and even Parliament are at last asking questions about the treatment of children in Acute Treatment Units (ATU). It reminded me of something that really upset me last year:

I was asked to assess an in-patient on a mental health ward in an NHS hospital: a 10 year old boy with diagnoses of ADHD and ASD. We'll call him Paul. Paul also had many signs of PDA, although this hadn't been explored further. He had been at a special school for children with ASD, where he had been getting on reasonably well for a while but his anxiety levels had been rising. One weekend his melt-down at home had resulted in his mother feeling at at total loss as to what to do and she had been persuaded by her partner to call the police.

A child who is having a meltdown is not able to be reasoned with, they have moved beyond any basic reasoning plus.

  • A child with ASD will not be able to understand reasoning at the best of times as it's  a higher-level language skill, never mind the worst moments. 
  • They may not have any idea that you have to adapt your language or behaviour for different people in different situations, so even when calm, will not see that they need to be 'respectful' to the local policeman who walks through the front door.
  • They may have sensory issues which means when that policeman fails to reason with them and decides to remove them from the situation, they will automatically react in a defensive  manner

Then, they're in the secure ward 'for their own and others' protection' because no-one really knows what to do. This was 'just for the weekend'; in Paul's case.

Paul was scared, worried about  his mother, still angry (because the initial problem was still there and his sense of justice is huge), in a strange place with strange people; so how is he going to react? Will he calmly listen to reason, apologise profusely or will he more likely go into self protection mode? Just like a cornered, terrified animal would! How will this change when he is just 10 with no idea of what is happening, why he's there, why he can't go home to his mum, why he can't go to school.

The demand avoidance meant that he could not do as they directed while appearing more socially able than he was. He could also use language to try manipulate those around him and if that didn't work he would try to shock them into getting what he wanted.

Go forwards 3 months and I walk in:
Paul had nothing but a TV with no remote, as that's a potential weapon, and a settee. The ward was just a room with a wall of glass where the staff could observe at all times. The nurse told me he'd been been smearing faeces over the glass and remained unmoved when I said I couldn't guarantee not to do the same in the circumstances after 3 months. Look what happens on Big Brother or I'm a celebrity when people are watched continuously, and they choose to be there!

Paul is sensory-seeking in an environment where there was no sensory stimulation. He had taken to satisfying this need partly by hitting the top of his head, so he now looked like a small Friar Tuck with a bald patch, he also hit his chin so had developed sores all along his jaw-line.

The other very effective way of getting his sensory needs satisfied was to provide the guards, oops sorry, nurses, to tackle him to the floor and the best way to do this was to poke any visitors in the eye. This resulted in 2 large, burly men pinning him to the floor where he then laughed manically because he had his sensory needs satisfied. This had gone on repeatedly so was a cycle of behaviour which was keeping him there. They didn't see him as an anxious 10 year old boy with needs, they saw him as a demented Damion character who was dangerous and must be contained.

They allowed me to go in to see him but weren't happy when I asked Paul if I could sit next to him, I introduced myself and  we started to talk about what he liked to do. He told me he loved football, trampolining, x-box games, school, playing tag, drawing, painting.... pretty similar to any 10 year old boy to be honest .......only he had been denied any of these for months!

After ten minutes, he (probably) wanted to get out of the situation and tried to poke my eye, I moved my head away so he just scratched my face and I calmly reminded him that I wasn't there to hurt him and that I would be polite and kind to him so would be grateful if he could do the same. One of the nurses tutted because he thought I was mad and the other said if he moved towards me again I'd have to leave. I moved to the other side so he couldn't see my scratched face, so we could move on but five minutes later he tried to poke my other eye. He was then on the floor, pinned down and I was bundled out of the door.

The staff weren't to blame as they didn't understand him, they were all agency workers who don't normally even work with children, who were doing their best. The saw him as a dangerous, deranged creature who called them names they'd never been called before, never mind from a  ten year old. The way they described him showed they didn't see him as human in many ways. They had no training on ASD, PDA, anxiety or sensory needs.

His poor mother was helpless to do anything. Representatives from residential schools came in to assess him but were given the  same warnings as me, so didn't go in and decided  they couldn't meet his needs.

I attempted to discuss how I saw the situation but quickly became aware that they were not interested as they were temps. I wrote it in the report instead. Although I had done what I'd been asked to do, I felt as if I'd failed him because I couldn't get anyone to change their views. I felt my ideas were seen in the same light as if I was proposing witchcraft!

He ended up in a ATU.


Thursday, 1 November 2018

How we use low arousal techniques to support a person with autism and Selective Mutism

Guest post by Rachel Tenacious

Low arousal can be used with any person who is having difficulties meeting the expectations of those around them as far as I am concerned but it works especially well with people who need to be in control of their life as much as possible as a way to keep their anxiety at a manageable level. Demand avoidance is a reaction to fear, facing scary situations all day every day is too much for any person, when a person is demand-avoidant it is their way of stopping the world just for a short time so they can breathe.

Our lives are full of demands but many of them can be avoided with a bit of skill and determination. When H was 5 we were told she was controlling us and we have been told this many times over the last 11 years and guess what, yes she is and yes she does but not for the reasons that most of  the so called "professionals" were suggesting. H controls her world because it is very scary. Speaking away from home became scary for H sometime after she started school and this was when she stopped doing it. We believe that she tried asking for help by crying at school but her voice was invalidated so she stopped asking.

Removing H from school allowed us to give her a break from the massively demand heavy environment that she was in every day. Learning about low arousal has helped us to give H a voice and to allow her to live a life of much lower anxiety levels.

The first and most important thing to remember is something first written by Ross Greene who wrote "The explosive child" he said "Kids do well if they can". This is the root of everything!

Before we can genuinely improve that lives of people like H we have to properly understand that. We have to remove blame, we have to believe that the person who is struggling is not making a choice, we have to have a good understanding of Fight, Flight, Freeze and most of all we have to think outside the box.

Living a low arousal lifestyle is completely different from anything else we have ever known, we have to throw away the "Traditional parent, parenting handbook" and we have to get creative. We have developed our own toolbox of strategies and techniques for getting through each day. We are led by H, we never punish, we never cajole, coerce or bribe her. If she needs us to speak for her we do, if she feels able to speak for herself we celebrate [secretly].

We have days with massive successes where she is able to order food or buy a drink verbally. We have lots of days when she can’t do those things but we step in and make sure she doesn’t miss out. We build in loads of downtime and never make direct demands about anything including speech.

We would never expect her to use social greetings but she will occasionally look at people to acknowledge them and sometimes say a quick “Hi” and we always say a general thanks, goodbye etc.

Because initiating a conversation is a massive demand for H and maybe something she never does away from home we sometimes give people information about things that she is interested in. If she is comfortable and talking about a subject she is interested in she can talk freely. And if she isn’t comfortable she can at least answer questions or nod.

We are actually ok with SM and the actually act of speaking has become a less important aim for us. We would like to get H to a place where she is able to be more independent and I think  we are already moving in that direction but whether speaking away from home will be a big part of that I don’t know.

H wants to learn to drive next year so that she doesn’t have to use public transport which is a sign she is  thinking about her future. Finding an autism/SM friendly driving instructor might be a challenge but we are used to challenge.

There is lots of info about low arousal strategies available, we particularly like Bo Hejlskov Elven because he is clear and concise and his book "Sulky, Rowdy, Rude" is easy to read. "The Explosive Child" by Ross Greene is also an amazing book but I found it a little harder to read.

I guess for me the whole basis of low arousal is making life more positive, working together to find out how we can help to overcome the anxiety that causes the challenges and respecting that actually its ok to avoid some situations, we need to look deep into ourselves and think about the things we avoid as adults that we were forced to do as a child and extend that out into our children and into our whole lives.

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.

Thursday, 25 October 2018

My thoughts on selective mutism as part of a demand avoidant profile.

Guest Blog by Rachel Tenacious


As background, H had been described as being "Unable to talk when she is anxious" by an Educational psychologist when she was 11. I went further when she was falling out of the mainstream school system and described it as "Effectively Non-Verbal when stressed". Another parent first used the term Selective mutism to describe her difficulties when I  described  H to them.

Sophie Harding and Libby Hill from Small Talk  agreed that H does have SM when she was 15.
I had begun to learn about demand avoidance and low arousal before I had heard the term selective mutism.  At fist I was unsure whether H fitted the PDA profile but I needed to gain a better understanding of her if we were ever to attempt formal learning again so I headed off to the NAS PDA conference in Brum in November 2016.

What I learned there was going to be life changing for us. The experts talked about a group of autistic people who demonstrated extreme demand avoidance but were not explosive or aggressive physically.

This was my lightbulb moment. H fitted this group perfectly and always has.
H avoid  everything that makes her anxious and everything she perceives to be likely to make her anxious. 

When she started school H did not have SM but she was massively anxious and was demand avoidant.

At preschool she never managed a whole day because it was too much for her but when school started she suddenly had no choice.

She screamed, kicked, ran away, begged, sobbed and clung onto us in an attempt to stop us from making her go. Unfortunately we didn't listen to her, she was we believe told to put up and shut up by school staff so she did.

I am not sure that H ever initiated a conversation with an adult in school ever and she certainly didn't ever ask for help.

When H is anxious she freezes, she makes it her mission in life to be invisible away from home and yet that is not her true personality. At home and with a  small group of very familiar and chosen people she is loud, funny and very outgoing.

The person that most outsiders see is not the real H, it is the H in self preservation mode. All demands are difficult and speaking is one of the most challenging.

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.]