Karen: Fighting for a diagnosis

Karen and JakeI’m 33 and live with my husband John, 31, in Luton, Bedfordshire. Our son Jake is four and has autism, and Lucy our daughter is two.

As a baby we always knew Jake was very different to my friend’s babies. You couldn’t take him anywhere because he’d just cry. I couldn’t take him shopping or to baby massage, he was always looking around worried.
At four months old we went to Ireland for a wedding and Jake screamed the airport down. We told people it was colic, we didn’t know what else to say. When we got to the hotel we couldn’t go down to the bar and join John’s family because Jake was still crying, he made himself sick. He seemed to adjust to the hotel but he screamed when we went outside so my mum stayed with him so I didn’t miss the wedding. John’s auntie said, “He doesn’t like our faces”. She was a speech therapist working with autistic children although she didn’t say so at the time.

Wondering what was different about Jake

At about a year old, when other children were getting words, he was very babbly. At 15 months I Googled “15 months old and not speaking” and what came back was “autism”. At the time I didn’t realise the extent of autism and just thought Jake was speech delayed. All the online forums I looked at talked about the importance of earlier intervention but I didn’t panic as Jake was on par with everything else, he sat at six months, walked at 13.

By 18 months I’d spent three months looking at different sites. I watched Jake and he never played with his toys, he only liked ones that were loud. He liked lights and spinning around, he’d watch the telly and flap like mad with excitement. I thought, “My little boy is autistic” but I didn’t understand very much about autism. John thought the same but I don’t think we realised what autism was, we thought it was a lack of language and that it’d come later.

We went to a health visitor clinic and he was running around. The health visitor looked at him and said, “No, you’ve got nothing to worry about”. I said to her, “No, he’s not speaking” and she said “Lots of kids don’t speak until they are two”. She said come back after his second birthday for a check up. In June 2009, his second birthday, I rang the health visitor and a nursery nurse and the health visitor came to my home to do a check up. I really had to stress that Jake didn’t have any words but they weren’t concerned. They asked if he lined things up and he didn’t. The check involved puzzles and Jake is really good at puzzles and he got through them in minutes. I was half thinking it was positive news but within 24 hours I thought it wasn’t right. They agreed to refer Jake to a speech therapist but they wouldn’t refer him for a multi-disciplinary assessment.

Disagreeing with the professionals

Six weeks later we went to the speech therapist, who I’d been badgering to give us an appointment. I raised my concerns and she was quite patronising, asking if I did picture boards with Jake but I knew he wasn’t interested in what a cow was. She wouldn’t refer him for a multi-disciplinary assessment. Then it was panic stations because I was reading about the importance of earlier intervention and no one would refer him for an assessment. I knew the exercises the speech therapist had suggested weren’t going to work at home so we rang a private speech and language therapist and she came to the house. She tackled it differently and came with bubbles, dolls and furry-feeling toys. It was all about texture. Jake shied away from everything. She spent an hour playing with him and taking notes and at the end said he was showing autistic traits. She wrote a report saying he should have a multi-disciplinary assessment to rule out any underlying reason why he wasn’t speaking, such as autism.

I showed the health visitor the report and she still disagreed with me and wouldn’t refer him. I went to see our local speech therapist again with the report and said we had to see someone senior but she didn’t agree Jake had autism. I wasn’t going to leave her office until I had a referral to a paediatrician so she referred us. We were relieved finally we’d know what a paediatrician thought about Jake; we’d lost faith in everyone else.

Jake gets diagnosed

In February 2010 we saw a paediatrician for two hours. When I walked in I said I was concerned Jake had autism and she assessed him and confirmed he was on the autistic spectrum. It ripped my heart out. John was with me and I broke down, even though it wasn’t a surprise. I felt she was aware of the fact we were anticipating the diagnosis and the problems we had incurred. Me and John were both raw and dazed and immediately had to meet people from the early years team to talk about what to do next.

That September Jake started a local mainstream nursery when he was three. It was a local nursery and I met the special educational needs worker and felt relieved. He knew all Jake’s little traits. Jake’s doing really well, he’s got a few words like “I want bubble”, “tickle” and “daddy”. The nursery’s been fantastic and Jake’s so happy to be there. His SEN worker helped get him statemented. Jake leaves the nursery in July and we’ve not found out if he’s got a place in the special needs school in Luton but we are hopeful.

We used to go to Cambridge to get private speech therapy because Luton doesn’t offer it. I read in our local paper about our MP, Graham Shuker, doing surgeries so went to see him in November 2011. I told him about the problems with the lack of speech therapy and he was very civil and compassionate, he wasn’t intimidating and he didn’t seem to think we were victims, which I appreciated. Gavin Shuker wrote to all the agencies involved and everyone wrote a report about Jake. We did get a speech therapy review but at the end of the appointment she said she couldn’t take Jake because she felt he would do better using PECS and learning to communicate in the home/at school environments.

How Jake's diagnosis has changed me

I’ve become more confident as a person because with something like this you have to get out there. It’s changed me; I’m very protective of Jake. It does test your marriage as you have all these problems that you didn’t before, so it makes you stronger and weaker at the same time. As a couple we really appreciate a night out now. I speak to my mum and dad a lot about it, they’re very close and they live minutes away. My grandma watches programmes about autism and tells me about them. I go to local support groups, they’re lovely and informal and we have a giggle. I used to shy away from such groups and think, “I’ve got my own friends” but they really are good.

Jake’s so close to Lucy and they have little tea parties. She’s got a fierce temper and he’s very passive so it’s often her taking the lead! He’s a lovely little boy and Lucy’s really brought him on, he looks and smiles at her when she talks.

I’d like to be a mum who wouldn’t change him but I would take away his autism. If I could live here forever with Jake I would but I’m not going to and I don’t want his sister to have to look after him as I know it’ll impact her life. I feel like he’s missing out on a whole world of excitement and it’s heart wrenching to see your child being anxious because you’re taking him to a theme park. I do feel proud of him because he’s overcome so much and he’s come such a long way, he’s done us really proud.

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