How an Autsim profile can help if your child is struggling at school: A First Hand Account
Finding support for children with Autism
There are so many things I want to write in this blog post to share about my daughter who has Autism and our journey trying to get the right support. I actually think I could write a book and she is only 12 years old!
About Poppy
Poppy had lots of issues as a baby, mainly her reflux. She used to scream all day and I had to carry her around in a baby carrier throughout the day. Thankfully she did sleep at night. Growing up, we noticed that she didn’t really interact with other children: she would go and play on the slide that no one was on. Poppy was happy if another child approached her but she would never approach them. Poppy always liked to copy what I did, for example if I was hoovering or changing her sister’s nappy she would like to do the same thing. She mostly enjoyed messy play in sand and water. Poppy loves the outdoors and favours blues over pinks. At primary school she enjoyed playing with boys rather than girls, climbing trees and playing football. Poppy had an obsession for Spiderman and would have hat, scarf, gloves and the dress up outfit. This was all ok until girls picked on her for wearing them as they got older and started to ask her if any of the boys were her boyfriend. So she stopped wearing the clothes she liked and stopped playing with the boys. Poppy is a people pleaser and always does what others want her to do.
Sensory Issues
Poppy has a lots of sensory issues. She cannot stand things touching her skin, like leggings, and knickers or seams on socks. As a young child she always used to take her shoes and socks off and much preferred to walk around bare-footed. Poppy cannot stand me brushing her hair. We have lots of arguments everyday. Even if I am very gentle, it still hurts her. Noise is a big issue for Poppy. She cannot stand the sound of people chewing and I remember when she was a baby she would cry when she was in supermarkets covering her ears. Poppy struggles with smells. When her father cooks spicy food it will make her cough. We had to have her excluded from the cooking club at school because she could not stand the smell and it gave her headaches. Poppy has a food phobia. She likes very bland food and it has to be separated on her plate, if we ask her to try new foods she will almost vomit when she puts it to her mouth almost like she is afraid of eating it. But when she was younger she used to eat things like Play Doh, paper, Lypsyl, creams, etc. Even now I can’t trust her with creams and Lypsyl as she will eat them.
Showing Emotions
Poppy has always struggled to show her emotions and share her feelings. She is very close to her family and loves cuddles but she doesn’t like to cry in front of anyone. If she ever hurts herself or she needs something she won’t speak out or will run away and hide. This is still an issue because Poppy wont talk to her teachers about any concerns she has at school or ask for anything she needs. She lacks confidence and has very low self-esteem.
Misunderstanding
Poppy misinterprets what people say. This has been a problem throughout her life and has caused her huge anxieties. It is also something that we didn’t properly pick up on until recently, but this actually has been one of Poppy’s main issues (I will come on to this). If Poppy was spoken to by a Teacher she would come home from school distraught and I would phone school to find out what had happened and Poppy would have completely misunderstood what the teacher had said to her. Poppy wouldn’t understand what she had to do for her homework and I would think she has been distracted in her lesson. Or Poppy would have friendship issues because she wasn’t playing games properly and they would make out she was cheating. But the reality was she didn’t understand the rules.
Receiving an Autism Diagnosis
Poppy was diagnosed with Autism in 2021. Previously a cognitive assessment in 2017 revealed that Poppy was highly likely to have Dyspraxia and Dyslexia. She had failed both her phonics tests in school and was behind her peers in Maths and English as she struggled to read and write. It took a long time for me to get a diagnosis of Autism (as I’m sure a lot of Parents can relate to) due to Poppy masking in school. I had to be her voice constantly, sharing all her issues she displayed and shared with me at home. The response I always got from school was, ‘we just don’t see it!’, or ‘this relates to her dyspraxia!’
Mental Health
Poppy’s mental health was declining, she was struggling at school, she wanted to kill herself, she self harmed, she had meltdowns, she struggled to do her work, she didn’t eat properly. We had so many assessments done: Ed Psychology, Speech and Language, SENIT, our local cluster emotional support (which Poppy wouldn’t engage in because she doesn’t like to share her feelings with anyone). We had lots of interventions in place at school but nothing really helped her. A referral was finally done and accepted by CAHMS as I kept pushing and we waited over a year for an assessment. Poppy was diagnosed with Autism and it was noted in the report that it was highly likely that Poppy also has ADHD - but noted that we would have to go through the process again for a separate assessment which we are currently waiting for.
During this time high school was looming which Poppy was becoming very anxious about. I decided if Poppy was going to have a chance at mainstream high school she would need an EHCP. This process was mentally and physically draining. The application was initially declined (I will save this for another blog post) it took 8 months in total before it was accepted.
Asking Aspiedent for Help
I decided I needed to find help to get to the root of Poppy’s issues so she could cope with high school. I reached out to Dr Elizabeth Guest and asked her to complete a profile on Poppy. The results were life changing: out of all the assessments and reports that had been completed no one had ever been able to understand and pick up on Poppy’s real issues. Poppy’s main problem is processing information. Poppy only picks up on key words and phrases when someone communicates with her and then she tires to guess what is meant. This means she quickly reaches information overload. It was also noted that Poppy relies on patterns to cope visually. There was lots of other information to do with Poppy’s sensory issues and how she has Exposure Anxiety. Exposure Anxiety is a form of anxiety that results when you expose something about yourself, especially if that is some kind of need – such as a needing to go to the toilet. This is why Poppy finds it impossible to ask for something or share information about herself. Poppy overthinks to the point where she doesn’t sleep. With this, and the added issue of Exposure Anxiety, Poppy feels there could be an anxiety backlash if she exposes anything about herself.
Everything suddenly made sense: why Poppy had been confused about what teachers and adults had said to her; why she didn’t understand her homework; why she struggled with friendships; why she couldn’t ask to go to the toilet at school. I was now armed with a detailed report that explained Poppy’s issues with recommendations of the right support that was needed to be put in place at home and at school tailored to Poppy’s needs.
EHCP
Poppy was relieved that finally someone understood her. She regularly put all her issues down to being stupid as she felt she was a failure at everything. We talked through all the interventions that I had added to the EHCP based on Dr Guest’s report such as: Poppy has access to a laptop at school with assisted software to support her with her Processing issues and information is presented to Poppy at school in small chunks using pictures and diagrams. Poppy has 1-2-1 time and specific Lego therapy sessions to help build a relationship with a trusted adult to help increase her confidence in being able to communicate her issues in a safe environment. These are just a few of her interventions in the final EHCP plan with the new recommendations.
Autism Support at School
This is what has really helped with getting Poppy to go to school. For years I have fought with getting her out of bed and physically having to dress her to go to school. It was as if a weight had been lifted from Poppy’s shoulders and she felt like she was going to get the help she needed and it wasn’t going to be such a struggle at school.
Poppy has just finished her last term of Year 7 mainstream High School. There was a period during the first couple of months of starting High School while her plan was being embedded when I was looking at other options such as homeschooling or a SEN school. However these are not needed. Now all the teachers are engaged in her plan and it is being fully utilised. Poppy is going to school everyday and it’s working for her. Poppy is still behind in some of her lessons because she struggles to read and write, but she is making slow progress due to her 1-2-1 lessons and the use of diagrams and assisted technology to help her process information. Whilst in her EHCP plan it is noted that Poppy should be not selected to answer a question unless she offers. School now report that Poppy has started to put her hand up and engage in lessons, this is a huge step forward for Poppy to actually speak and answer a question not being sure if it is the right answer or not. Poppy has managed to make some friends and while she does spend a lot of time in the Nurture Room during breaks and lunches away from the noise and busy times, that is what works for her. She has found her own way and she is much happier and settled.
Autism Support for Family’s
At home we understand how to communicate with Poppy when she is having a major meltdown and how best to plan and prepare for any change such as holidays and days out. We now know that Poppy uses organisation as a coping strategy as she overthinks everything that could happen or go wrong. We find if we encourage Poppy to ensure she is organised this helps with her anxieties. Poppy has schedules in her room to show what she needs to do each day. This also helps to stop me overwhelming her with instructions. When we go on holiday, we share information about where we are going and what the steps are for getting there. Poppy still needs help with dealing with her emotions: she is not very good at this. What is crucial for us is that we now know how best to deal with certain situations and what strategies to use at home to try and stop things spiralling out of control. We encourage Poppy to reason things through by asking questions and finding solutions to problems together. This helps to build her self-esteem by showing Poppy that she can find solutions when she gets stuck, if she takes time to think things through. Poppy now enjoys playing Football for a club and Table Tennis with her Dad. She has previously tried every type of sport/club and given up because she felt she wasn’t good at anything. We have never been able to make her understand that in order to be good at something you have to keep going and learn how to be good. If she wasn’t instantly good at it she gave up. We now advise people how to communicate with Poppy in order to include her properly and help build her confidence.
Gestalt Hearing
Poppy wants to do what other 12-year-olds do and have her independence. The problem is that as part of her sensory issues, Poppy also has Gestalt hearing. This means that she struggles to separate background noise from foreground noise and therefore struggles to hear someone when there is background noise. This is something that came to light in the assessment completed by Dr Guest. We had never heard of this before. It means that Poppy will be unable to learn in a noisy environment as she will be too distracted by background noise. However, it also makes Poppy vulnerable when outdoors as she may struggle to hear cars when she is crossing a road if there are other noises present. Also because of her processing issues, Poppy’s navigation skills are poor. In order for her to spend time outdoors, we have taught her how to use maps on her phone and we make sure she is always with a buddy to help her cross the roads following the recommendations in the Aspiedent report.
Life Changing Results
I learnt so much about Poppy from one single report, following numerous assessments throughout her years at Primary school. This has now given her the freedom to be herself and also provided her with the same opportunities as her peers. She now feels more supported, included and her confidence is increasing now the barriers to learning have been removed. There is no reason Poppy cannot progress in school.
If your child is unhappy at school or their behaviour at school is negative, from experience, I would suggest that no one has ever got to the root of the actual problem and therefore the suggested interventions may not be working. Having a profile completed by Dr Guest at Aspiedent CIC has made such a massive difference to Poppy and our family life. I was constantly being told that Poppy needed to make changes to fit in or Poppy needed to adapt to school life but It was always obvious to me that it was school that needed to make the changes and Poppy should be allowed to be herself and still be able to thrive. This is happening now and Poppy is growing up learning more about herself in an environment where she feels safer and happier.
Update about how Poppy is settling at school following an Autism Profile from Aspiedent
Progress at school
Poppy is now in Year 9 of mainstream High School. Although she will say she doesn’t like school if you asked her, she is doing well on her reports academically. Poppy is going to school everyday, and it’s mostly working for her. Poppy still struggles in her lessons because of her dyslexia which impacts her reading and writing skills, but she is making progress due to her 1-2-1 lessons. Her processing issues still cause problems and no doubt always will. However, we are aware of this due to the assessment with Aspiedent and are able to get the right support in place to help Poppy manage this. The use of diagrams and assisted technology help Poppy to process information. Regular meetings at the start and the end of the week with a known teacher to check her understanding mean that Poppy can share her worries without having to ask (although this still needs more work). What Poppy finds most difficult is coping with change or teachers occasionally forgetting to adhere to her support plan.
The EHCP (Educational Health Care Plan) has been vital for Poppy to have all the right interventions in place, I have regular meetings at school where the teachers tell me this is a girl who doesn’t need interventions and they tell me that they want to take them away. But I have to remind them that this is a girl with all the right interventions in place and she is thriving because they are working. Take them away and she will no longer be able to cope in a mainstream school. The example I use is that if a blind person learns to navigate the outside world with the aid of a guide dog or a white stick you wouldn’t take that away from them. So just because Poppy is showing signs of coping and developing, it doesn’t mean that the plan needs to be removed: on the contrary, it means the plan is working.
Poppy is able to navigate the school building well and knows where all her classrooms are. Her teachers all report that she is a very lovely girl whom they are very proud of. She has started to put her hand up and answer questions in class which is a big achievement for her to be engaging in lessons. She spends break and lunch times in the Nurture Room because she doesn’t like crowds and the strong smell of foods. Isolating herself likely prevents Poppy from widening her friendship group, however she is happy in this quieter room and the Nurture staff are really supportive.
Poppy has made a couple of friends at school, she likes to keep school relationships and home life very separate and still finds socialising very difficult, but it’s been a huge step making friends and makes going to school much easier. Last school year has seen her go up a level in PE and Mathematics and this has really boosted her self-esteem. We still have challenges: timetable changes or change of teachers can set Poppy back until she settles in to a new routine. Poppy is also easily distracted by disruptive classmates or noise which impacts her learning. But we understand Poppy more and Poppy understands herself and how to self regulate if she hasn’t gone past melting point and this is making a big difference!
Making lists each day so Poppy understands what tasks she needs to complete has made a big difference, so she doesn’t become overwhelmed with multiple instructions. Poppy now knows what she needs to do when she gets up and can organise herself better without daily meltdowns before school. If we do forget to print a list, her routine goes wrong and she is not able to do all the things she needs to. We have interventions at home as well as at school and we must stick to them to make sure she has structure. Things will inevitably change which she always finds difficult, but as long as we explain things to her clearly and slowly in a way she understands she does manage even if sometimes she can be very upset with change.
Diagnosis
We fought so hard to get a diagnosis for Poppy, there were so many signs that she was struggling at school and at home but school did not see everything that we did, I had to be Poppy’s voice because she didn’t have one and we constantly faced barriers to obtaining support. The system took us round in circles through tick box exercises of family support and emotional support for Poppy which she couldn’t engage in because she doesn’t like to share her emotions. Eventually I took on a self referral, documenting all of Poppy’s issues and requesting a CAHMs assessment for Autism. This was a hard task for me although I’m used to completing forms in my day to day job. We had to wait nearly 2 years for an assessment and then Poppy was diagnosed with Autism and highly likely ADHD. But we were informed we would have to go through the whole process again to get the ADHD diagnosis. We have currently been waiting two years for the ADHD assessment and I understand the waiting lists are increasing.
In May 2021 we finally we had a diagnosis of Autism, but what did that mean? School started listening to us and did try to put additional support in place, they sought assessments from Educational Psychologists and Speech and Language Therapists to create a plan for Poppy, but these didn’t really help her. The CAHMs assessment teams referred us to websites and suggested books we should read to understand more about Autism, but we found these very generic. They didn’t really provide any specific advice. Poppy did feel better about the diagnosis, it was like she could put her struggles down to something and a weight had been lifted from her, but her struggles did not improve, her mental health was impacted and we didn’t know how to help her.
EHCP
The next step was to apply for an EHCP as high school was looming and I wanted to make sure that Poppy had all the right interventions in place as she wanted to go to the same mainstream school as her sister. This was also a very difficult process: what should have taken 20 weeks took 9 months because I had to appeal in court. The decision was overturned in the first 5 minutes of court and Poppy was given her EHCP. What I had learned throughout the months and years that had passed and through meeting Dr Guest from Aspiedent was that Autism can be so different for everyone. The EHCP would have been pointless if we didn’t understand Poppy’s Autism properly. A diagnosis is irrelevant if you don’t get to the root of the particular issues.
Following the Aspiedent profile for Poppy, it was like a light bulb moment and everything started to make sense. Now we understood more about Poppy’s Autism: for example her processing issues. We knew exactly what support she needed and could make sure we had all of these put into her personal EHCP plan. I had to make many amendments to the generic draft EHCP report that was issued initially, but I had the information I needed to ensure it was personalised to support her properly. This is why Poppy is thriving at school: her plan is an individual plan that caters for her specific needs and her positive reports are testament to the fact that its working.
We know that Poppy would find school easier if she was in a more relaxed environment, with smaller class sizes and with teachers that are more experienced and focused on providing individual support. For this reason we are looking at an alternative provision for year 10 where she can have additional support to prepare for her GCSE’s and to successfully study her desired vocation. As Poppy is now able to recognise her strengths and weaknesses better, she is able to talk to us about her preferences for her future education and career. We are proud of the way Poppy has begun to accept her differences and navigate her life the way that suits her. This has been testament to understanding ‘why’ Poppy was struggling and what support she needed at home and school.
