"I feel heard and understood". One mum's fight for her daughter


R is seven years old and has a diagnosis of autism. R was diagnosed during the lockdown in 2020 so there was no support in place. This was very hard, and mum, F, felt incredibly isolated.


How things were before

Prior to getting the diagnosis, F was taking R to a baby group. F noticed that all the other children would sit down, listen to songs, and take part in activities. Her daughter was not able to focus or participate and would run off. It was clear to F that her daughter was different to the other children and she did not know what to do.


She approached the staff running the group to discuss her concerns about her daughter. There was a drop in session with a health visitor and they suggested that F ask the health visitor for advice. In 2019 R was referred to a paediatrician. An appointment was scheduled for April 2020, but then in February the country went into lockdown. The appointment had to be cancelled and rearranged for a later date in autumn.


Meeting Autism Independence for the first time


It was during this time that F heard about Autism Independence. She was given a number for one of the team. As the office was closed due of the lockdown restrictions, the team could only offer support remotely.


When the time came to go to the appointment with the paediatrician, someone from the team accompanied F. F does speak English but feels overwhelmed in appointments and having the team there to translate for her in Somali helped her understand what was happening.


In the meantime, F’s daughter was attending nursery, but nothing was in place to support her daughter’s needs. When F’s daughter started reception, she came back to Autism Independence for support. She would come to the office once or twice a week. It was a safe space to come to and she felt heard and supported.


Getting the EHCP right


The team was consulting with school the school SENCO.  F’s daughter’s needs could not be met in a mainstream school, but they could not find a special school for her to go to. The Education Health and Care Plan (EHCP) had not been updated since R was in reception. No one did anything in year one and there had been no communication from the school. F did not know what an EHCP was, and she was not aware that the school had applied for one. They had gone ahead with the application without consulting with the family. The school had sent a letter, which F signed, but with no understanding of what any of it meant. The team advised her that she needed to be Involved in the EHCP process. Everything was new to F and she found it confusing.


“It Is a whole new world and I have no knowledge of It.” F, Bristol mum


F found that it was, and still is, a constant battle. Without Autism Independence she would not know about the special schools. She learned about her rights, about what an EHCP is, and what to include in this. Since working with Autism Independence, she has had support with appointments at the school and with the doctor. There are always so many appointments and it is overwhelming so the support she has had with these has made everything so much easier.


Finding a school to meet R’s needs


There has not been much advice about schools. R currently goes to a resource-based school. This is usually for children who can eventually transition to a mainstream school. F was told there were no places at other schools, so she felt she had no other choice but to accept this. The family is giving this a go, but R’s needs have increased.


F does not think that R will ever be able to go to a mainstream school. Autism Independence has intervened and it is looking for a special school for her to go to. With the team’s support R has had psychology and Speech and Language Therapy (SALT) assessments. The SENCO will support R’s transition to go to special needs school, where she will need 1:1 support.


The Annual Review is coming up. All reports have been completed in preparation for this. Through the review F, with the support of Autism Independence, will be challenging the current provision and requesting she is given an educational placement at a special school.


There have been a lot of challenges along the way which have slowed progress. R’s case worker left earlier this year and had not finalised the EHCP. Instead of waiting for the previous one to be finalised the team arranged for new reports to be done to accelerate the process of getting her EHCP in place. There is still no new case worker assigned so the team has stepped in, continuously chasing and pushing to move things along.


Getting support in other areas


R’s behaviour can be erratic, and she has no road sense. F then started to take taxis to keep her daughter safe. There were also problems at times with this. If the taxi took a different route R, due to her autism, would not be able to cope with this change to her routine.


F went to her GP to get a supporting letter to send to the council to help get school transport in place. Initially the application, which had been completed by the school, was rejected. There was an issue with the distance being travelled and it did not fall within the approved threshold. Since Intervening Autism Independence has managed to secure school transport so that R is able to travel safely to school.


R was getting the lower rate for Disability Living Allowance (DLA). With support from Autism Independence she reapplied and secured the higher rate. They also supported F to apply for Carers Allowance.


The Impact of working with Autism Independence


F says that when you come to Autism Independence your eyes are opened, and you find out about a lot of important information you did not know about before. These are all vital to help your child get the support and educational provision they need.


F says that R Is only seven years old and is just at the beginning of her journey. Since working with Autism Independence, she feels like she is on the right path and that her knowledge about autism has increased. She thinks that in the long run this will be invaluable in her being able to support R herself. She thinks that without the help she has had things would only get worse. There are still challenges to overcome but things are slowly improving.


“It is different when you are on your own with no support – you feel lost. When you are with Autism Independence you feel like you are no longer on your own.” F, Bristol mum.