Autism Independence has given us hope

A Bristol mum talks about the positive impact working with Autism Independence has had on her son’s life.



Ifrah’s son is five years old and until recently had no diagnosis. She was experiencing a lot of problems and did not know where to turn.  Her son is non-verbal, and was not able to access a nursery placement. It did not help that the family were also moving from emergency placement to emergency placement. This meant it was difficult to be in a catchment area and get an educational placement. Her son was at home all day long. He had difficulty communicating, so he would scream a lot. He was also not eating or sleeping. It was a difficult situation to manage.


When he was three years old, Ifrah took him to the GP. She was told that he was likely to have autism and a referral for an autism assessment was made. This was a step in the right direction. With wait times for assessments high though and with limited understanding of what autism was, Ifrah felt overwhelmed. The GP had also not signposted Ifrah to any other support services. She felt very alone and continued to struggle on.


When he was four years old, her son got his first nursery placement, where they noticed that he had a support need. He was left to his own devices most of the time though as he struggled to listen and would do his own thing. The school worked with him for a few minutes a day, using Picture Exchange Communication System (PECS) to communicate with him, but this was not enough to meet his needs.


How meeting Autism Independence changed everything


Ifrah visited the Autism Independence office for the first time earlier this year. She had been at the GP and was crying. The translator who worked at the GP recommended going to Autism Independence and gave her their number.


During this time Ifrah was still having issues with housing and had to keep moving. They had lived in three homes within two years, which was disruptive for family life. Her housing support worker, not understanding the situation, was telling Ifrah that her son had to stop drawing on the walls. They were also telling her that she had to do a better job of maintaining the house. With so much going on with her son, and having other children to look after, she was feeling under enormous pressure.


The approach


As soon as the team started working with Ifrah, they helped with the housing. They spoke to the housing support officer to explain that Ifrah’s son had additional needs. This helped to give the housing team a better understanding of why he was doing this. This also helped to reduce the pressure that Ifrah felt she was under. The family have since been offered permanent council housing. This has helped to give them much needed stability, not only with the housing, but also around schooling.


Overcoming the communication barrier


Communication between the nursery and mum had not been good either, mainly because of the language barrier. Autism Independence was able to translate from Somali into English and vice versa, so both parties were able to understand each other. Neither the school nor Ifrah knew which road to take for her son’s transition from nursery to reception. To help progress matters, Autism Independence requested an Education Health and Care Plan (EHCP) assessment and within a month started working with Bristol City Council. They worked together with the case worker and completed the EHCP without a diagnosis being in place. He now has a temporary educational placement at a local primary school place.


The team then requested an urgent referral for the diagnosis to speed up the process of getting him into a school that can meet his needs. A paediatrician, an educational psychologist and a speech and language therapist all came to assess him.


Ifrah met with the Birth to 16 team three times per week and they went to the school together for appointments. When her son started reception in September, he only had three hours of education per day, as the Special Educational Needs (SEN) teacher was only available for this amount of time. This meant that once again Ifrah would have to pick him up at midday and take him home.


Autism Independence intervened again. The team asked the school to send a report to the paediatrician and to ask them to come again to carry out a further assessment. After this they managed to get everything required in place and in October Ifrah’s son received his diagnosis. They can now move on to the next steps of working with Bristol City Council to get a special school placement.


“Thank you for bringing Autism Independence into my life”- Ifrah, Bristol mum


The Impact of working with Autism Independence


The last few years have been stressful and emotional for the entire family. Ifrah has other children, and she struggles to be able to give them more attention because of her son’s ongoing support needs. They still have a lot to sort out for him. He has sensory issues and still does not sleep or eat, but things have progressed so much since she started getting support from the team.  She finally feels understood and relieved that her son is getting the help he needs.