My son, Max was recently diagnosed with autism and I think I’ve just about got my head around that, but what happens next? Where do we go from here? What help, if any, is available to us?
At the end of Max’s assessment last week we were given a little bit of information on what will happen next and we were also given some leaflets, which was helpful as everything was a bit of a blur by the end of the appointment.
The first thing that happens is that the Autism Nurse will come and visit us at home to answer any questions that we have. I already have a pretty long list of questions so I’m eagerly awaiting this visit. I’m not sure when this appointment is yet as we’re waiting for them to contact us to arrange a date.
We have also been booked on to two autism workshops, which I’m hoping will give us some helpful advice, but these aren’t until June. The first workshop is about social interaction and looks at social problems and ways to help your child with their social skills. The second session is about behaviour and covers routines, rigidity, obsessions and ways to help your child with these things.
I know that social interaction is a big problem for people with autism and it can be for Max, but he is doing well at school and is making friends so at the moment this isn’t too much of a concern for me. Our main problem is and always has been his behaviour, we are desperate for help with how to control his meltdowns and his obsessive behaviours. Some days are OK but others can be absolute hell and I just don’t know where to turn. So hopefully the second workshop will be a big help to us.
One of the leaflets we were given at his assessment was from the National Autistic Society. I had already heard of them but have since started following them on Facebook and Twitter and I’m finding it very handy. The leaflet is actually pretty helpful with lots of information on what autism is, education, benefits and dealing with diagnosis. There is also an Autism Helpline which is good to know about, and its free!
We also plan on applying for DLA (Disability Living Allowance), I’m not sure if we will be eligible but its worth a try. I wasn’t sure how I felt about this as I don’t really see him as having a disability, he’s just Max. I questioned whether I thought his needs were greater than that of a neurotypical child but after a lot of thought I feel that they definitely are.
The extra money that DLA would give us would allow us to take him out more and keep him occupied. He can become very frustrated when he’s stuck in the house all day and its very difficult to keep him busy as he struggles to entertain himself, he needs a lot of guidance. It would be lovely to take him to swimming lessons or dancing lessons for example.
I don’t think there will be much change at school because he seems to be doing quite well at the moment. His teacher is aware of his difficulties and seems to deal with him very well. I imagine that in the future if he does start to struggle at school there will be additional support available to him, but at the moment it isn’t necessary.
We do have a parents meeting at school on the 16th March, this is with Max’s teacher and the school SENCO (Special Educational Needs Coordinator). It will be good to get up to date with how he’s doing in School and ask them a few questions that I have.
Thank you for reading.