I now feel heard and understood
One mum shares how Autism Independence has helped her get support in place for her daughter.
R is 7 years old and has a diagnosis of autism and is non-verbal.
Prior to the diagnosis
Prior to getting the diagnosis, F was going 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, so would not participate and would run off to different places. It was clear to F that her daughter was different to the other children. She did not know what to do.
Whilst going to the baby group, she approached the people running it 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 they referred her to a paediatrician. An appointment was given for April 2020, but then in February the country went into lockdown. The appointment had to be cancelled and rearranged for a later date.
Working with Autism Independence
The family struggled on until autumn when they had the first appointment. It was during this time that F heard about Autism Independence. She got a number for one of the team, but the office was closed because of the lockdown restrictions, so the team could only offer support remotely.
When the time finally came to go to the appointment with the paediatrician, the team came along. F speaks English but feels overwhelmed in appointments and having the team there to translate for her in Somali has helped her understand what is going on. This was a huge help. They also helped with benefits, securing the higher rate of Disability Living Allowance (DLA) for R and helping F get Carers Allowance.
During this time F’s daughter was attending nursery, but nothing was in place to support her daughter’s needs. When F’s daughter started reception, F came back to Autism Independence for support. She would come to the office once or twice a week. She felt heard and supported here and it was a safe space to come to.
Understanding the EHCP process
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 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 1 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 says that when she first came to Autism Independence her eyes were opened, and she found out a lot of important information she did not know about before. These were all vital to help her child get the support and educational provision she needs.
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 coming here, 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 been invaluable.
How school transport has kept R safe
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. This has meant that R now travels safely to school and the family no longer has to pay £400 per month on taxis.
Ongoing need for the right educational placement
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. R’s needs have increased though and F does not think that R will ever be able to go to a mainstream school. Autism Independence has intervened and 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 and 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.
The impact of working with Autism Independence
F says that R Is only 7 years old and is just at the beginning of her journey, so there is a long way to go.
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 without the help she has had things would have 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.