‘It’s been lovely having a parents’ support group for families with autism in Hartlepool,’ Michelle smiles.
Michelle had a difficult birth with Sophia, now ten, who had to spend time in special care and from an early age she had a suspicion that there were some issues, ‘Sophia never slept well, she still doesn’t but she is very energetic and extremely sensory – she would have a meltdown if you took her into a supermarket and she struggles being around a lot of people.’
As Sophia reached two-and-a-half, Michelle was aware that she was not talking and communicating like other children. She suspected autism but was concerned that it is quite often harder to get girls diagnosed.
‘Sophia was started on the diagnosis pathway at four years old when she started primary school. Michelle explains, ‘Her communication wasn’t good, she wasn’t putting sentences together and her vocabulary wasn’t varied. It was at a meeting at school that it was mentioned she should undergo an assessment for autism. I started reading up about it. Sophia has a lot of sensory issues, anxiety and difficulties with social interaction, communication and repetitive behaviours so I could see the traits of autism. A year later she received the diagnosis of ASD.’
When Michelle and Scott had their second daughter Aimee, now seven, they did worry that she may be autistic too but while they can see that she can be quite anxious, they have come to the conclusion that she is not on the autism spectrum.
The family first visited Daisy Chain’s Saturday activity days. Says Michelle, ‘As well as being something for the children, it gives you a chance to meet up with other families and talk to other parents about their experiences. You realise that you are not alone. The girls’ favourite part is the farm – they love petting the guinea pigs. Horses, pigs and sheep. We bought two guinea pigs from Daisy Chain for them because they enjoy them so much.’
Michelle attended the parent support group Links when it started a regular Hartlepool group every Monday during term time at West View Resource Centre. ‘It has been really helpful. It’s good to know there is somewhere that you can share experiences, get support and education.’
Michelle admits she still feels emotional so the support and networking opportunities remain important. ‘We have challenges. Sophia does struggle a lot socially and it has taken a long time for her to build up friendships. Also because of her sensory issues and anxiety she can become frustrated and angry, it’s difficult for her to regulate her emotions. As she gets older some things get easier but other things get harder as she tries to deal with her emotions around growing up and developing. We feel that Sophia can and does mask a lot – she knows she is different but she doesn’t want people to see that or see the struggles she has. As she is more aware of her differences, her anxiety can build up.’
Michelle is seeking support from Daisy Chain to proactively prepare Sophia for the transition to secondary school. ‘You want the best for your children and that can be hard to achieve with an autism spectrum disorder which can be invisible in many situations. Sophia’s struggles may not be seen at school but then she will come home and explode with the effort of spending all day masking how she is feeling. Her social and emotional needs may not always be met. At home, she can tell me if she is getting overloaded and needs time to process things.’
For Michelle and Scott, Daisy Chain was the starting point on their journey to learning how to handle autism and family life. ‘We knew nothing at first and that is so frightening. Daisy Chain was the friendly, supportive place we started to find out what we needed to know.’