Diagnosis of autism is not a magic key

In the second of our blogs published during Autism Awareness Week, we are featuring another mother talking about her autistic son. Like Maggie’s blog on Monday, Suzie has some really insightful experiences to share:

“My eight-year-old son Jacob has High Functioning Autism.

“Jacob was 18 months old when I first took him to the GP to voice my concerns about his development. Finally, three years, and many appointments later Jacob had an ADOS assessment. The same day we were called in to meet with his paediatrician and were given the news that Jacob had Autism.

“The news didn’t come as any surprise to me and in many ways – I was relieved to finally have some answers. Our paediatrician said that Jacob would benefit from some occupational therapy for sensory issues and advised that there was an Occupational Therapist that specialised in children with Autism. However, she also advised that while she would put him on their waiting list immediately, it would likely be a one year wait before he was seen.

“During that time, Jacob had several bouts of illness and whenever we visited the doctor I would mention that Jacob had autism. It’s important because he doesn’t feel pain in the same way that we do. So, for example we were once driving him to hospital as he was having an asthma attack, and as we drove past our local park Jacob started pointing and through his laboured breaths saying ‘Park! Park! Can we play?’.

“I was amazed at the reactions of the doctors when I mentioned autism. Many questioned it and one even asked if I had self-diagnosed him! I was told by one doctor that, “He’s not autistic because he made eye contact with me.” It surprised me that the doctors didn’t understand how broad the spectrum of autism is and I found the comments they made very upsetting.

“I contacted Occupational Therapy after a year to see how far along the list Jacob was and I was told that the specialist OT had gone and there was no funding to replace them. In addition, occupational therapists were not taking on people with Autism due to their complex needs.

“Meanwhile Jacob’s sensory issues were becoming problematic at school and he was starting to fall over a lot and wasn’t putting his hands out to stop himself. Because of this, Jacob had several head injuries. This resulted in four visits to A&E in six months.

“One head injury caused vomiting and a concussion and one broke his nose and scarred his face. We were regulars at A&E and were becoming increasingly upset and worried about it. The A&E nurses were consistently fantastic when we mentioned Jacob’s autism, and always put us in a quiet room to wait so he didn’t become distressed.

“The A&E doctors recommended Occupational Therapy to us, but we explained that the NHS wouldn’t provide it. As a result, they wrote a report to our GP requesting Jacob be referred to physiotherapy instead as a compromise.

“After four months, we were assessed by a Physiotherapist. The Physio made a comment that Jacob did not appear autistic during the session. Whilst we had heard this many times, this time it was said in a very positive way. She advised that as Jacob did not initially appear autistic, we could use this to our advantage.

“She referred Jacob back to occupational therapy for issues around his balance, but didn’t advise about his autism, as the issues weren’t directly linked. She told us that she would let the OT know informally that Jacob had autism, but how it ‘didn’t present itself in a clinical setting’.

“After a further two months, we were seen by an OT. After Jacob’s initial assessment, I was told he would receive occupational therapy sessions to help. A couple of weeks after this appointment (before any therapy sessions had occurred) I received another phone call to say that funding had been granted for a specialist. This meant Jacob’s caseload would be being transferred and he would be put on a new waiting list to see the specialist OT.

“Nine months later I had a telephone consultation that lasted almost two hours and was incredibly in-depth. I couldn’t help but be sceptical about whether Jacob would receive an assessment, or if funding would be pulled before he reached the top of the waiting list again.

“Finally, three months after our phone consultation, 12 months since our previous OT session, and almost three years after Jacobs initial referral, we had an appointment. Jacob’s assessment was carried out by a lovely OT that really knew how to interact with him.

“It was very clear during this meeting just how much Jacob struggled with simple tasks involving writing and coordination. She commented that for Jacob the simple task of sitting in his chair at school would be like us sitting on a gym ball after three gin and tonics.

“I was advised that therapy would be very beneficial and Jacob was put on a four-week programme with other children aimed at helping his core stability. At the end of this he had another assessment and I was given the news that this was the end of his therapy as the NHS had only provided funding for four sessions per child to clear their waiting list.

“I was provided with exercises that we were to complete at home, but couldn’t help reflecting on three years of appointments, phone calls, hospital visits, tears and tantrums (from me!) for just four sessions of therapy.

“On a positive note, the exercises we were given have helped, though I can’t help but wonder if I could have saved a lot of time and effort by looking them up myself online. We have also now found a great GP that is fantastic with Jacob and supportive of us and any needs we have.

“Maybe I was naive when Jacob was diagnosed. I believed that the diagnosis was a magic key that would help us access all the help Jacob needed. Unfortunately, this is not the case. Whilst most health professionals have been great with Jacob and have the desire to help, there is a lack of funding and understanding surrounding autism that unfortunately lets the system down.”

Suzie – from Essex