Caring for a Child with Autism
Autism is a condition that affects one in every 100 people in the UK, and there are varying symptoms across the autism spectrum. Autism can cause speech and language problems, learning difficulties, or in some cases above average intelligence. The condition can have a significant impact on the sufferer and the lives of affected families.
Elaine Pearce, 36, cares for her five-year-old son, Ryan, who has autism, epilepsy and hypermobility of the joints. Ryan’s complex health conditions mean that he needs constant care and attention.
Early Signs of Autism
Symptoms of autism can become clear during infancy if parents notice low levels of interaction and speech. However, some sufferers can reach adulthood without a confirmed diagnosis.
Elaine first noticed something wasn’t quite right when Ryan was six months old, and further symptoms developed over time.
“We first became aware that Ryan was a little different when we realised he wasn’t progressing as fast as his twin brother. We went to see health professionals, where we were dismissed and told not to compare the children.
“We went back when Ryan was 18 months old and struggling to walk. We were told he had over extending joints, which would improve by the time he was five, so again he was discharged. By the time Ryan was two-years-old his symptoms had started to progress; he wasn’t talking much, and he had his first seizure.”
Ryan’s autism, combined with his epilepsy and hypermobility means he can never be left alone. His symptoms vary from day-to-day and are enhanced by stress and new situations.
“Ryan is epileptic, which means he suffers from convulsions and absence seizures. The symptoms of his autism are far more complex and can vary depending on the situation.
“He finds eye contact difficult, along with expressing his emotions correctly. He dislikes loud noises, lots of people, busy places, hot environments, and water in his face. He is very sensitive to touch and will only wear certain types of clothing due to the feel of the material.
“The stress caused by these situations can manifest in different ways; the most common and noticeable is a complete meltdown. This involves screaming, grunting, punching, biting, kicking and smashing up anything he can lay his hands on.”
Managing Autism on a Daily Basis
Taking care of Ryan has changed Elaine’s life dramatically, as she juggles daily tasks like getting him dressed, with his strict routine and medication.
“Ryan’s conditions have a massive impact on daily life. Everything has to be planned in advance and put on his yearly, weekly and daily picture planners, as he can’t deal with sudden changes in routine. He takes much longer to get dressed and eat breakfast as he has no perception of time, and we have to use an egg timer to make him aware that time is passing. He struggles with verbal communication because he cannot recall the words he needs to explain things, so even a simple discussion can take longer than usual.
“Sometimes we have to go and observe new places before we can visit them. When out and about Ryan finds it very hard to eat and pick food from a menu if it doesn’t have pictures, so we have to consider this. When he is stressed, he can need the toilet at very short notice, so we always need to know where one is. We have to ensure we have his ear defenders with us, as he cannot stand the sound of the hand dryers. He also cannot walk for long periods as it hurts his legs and he gets tired.”
Going to School
Most five-year-olds love going to school, but it’s one of Ryan’s major challenges, as it’s an environment he has not got used to yet.
“He hates school. It can take us a very long time to get him ready and get there. They have to restrain him physically to get him to stay, which breaks our hearts every morning.”
Elaine and her family need to take several precautions to ensure that Ryan is cared for correctly in school.
“We need to make sure that he has all of his sensory aids with him to help keep him calm. The school also have a special procedure that they have to follow if he has a seizure.”
Receiving an Autism Diagnosis
Elaine has received help with Ryan’s autism from his local GP, who has written referral letters to different departments of the NHS to obtain an official diagnosis.
“The health professionals only started to take notice of his sensory and behaviour issues after a serious incident at home. There were so many opportunities for them to intervene and assess him sooner but they were all missed.
“He still has no formal autism diagnosis from the NHS; they have refused to see him on four separate occasions, despite numerous referrals from various health professionals. However, we do have a private diagnosis, as we needed to know what we were dealing with.”
Elaine has had to do her research to find out what additional support options are available to Ryan.
“Unfortunately, we’ve never been given any information about the condition or what grants and benefits may be available to him. We’ve found out all that we know ourselves. In the last couple of months, we’ve been on a course, which helps parents deal with autism and its difficulties.
Ryan’s autism symptoms have a huge impact on his life, but he has plenty of interests and hobbies that make him happy.
“Ryan enjoys going to theme parks, and he loves roller coasters; the bigger, the better.
“He loves Spider-Man, and everything he owns has to have him on it. He also has a fascination with dinosaurs and goes to bed with a book about them every evening.”
Medical Jewellery to Alert Others
Medical ID can be incredibly useful in emergency situations. Ryan wears products from The ID Band Company to alert others to his health conditions.
“We bought a red silicone toddler medical ID bracelet. We’ve had the band engraved to show that Ryan has epilepsy and autism, as well as the medication that he is on.”
Ryan also wears key fobs/bag tags from the new Allermates range as an extra precaution to display his conditions.
“We have attached the tags to the zip of his school fleece, bag and also his coat. They display that he has epilepsy and on the back explain that he also has autism.”
These medical ID products give Elaine and her family peace of mind when they are out and about, and they also make Ryan feel safe.
“Ryan wears his band 24/7 and has a panic attack if he can’t wear it. He loves his band very much, especially because it’s in Spider-Man colours.
“We would highly recommend the ID Band company. We found the customer service great, and they are very quick to reply to comments and dispatch the items.”