Hello

Hi Barb, I've got lots of empathy. Are you UK based? I'm in NZ and initially I felt there was nothing but I'm finding more as I go.

Kids change over time and their needs change so I would be asking for a new assessment. Hopefully this will give some direction for support.

In the meantime, think about what things she struggles with that she will need to be able to do if independent and work with her on creative ways to learn and do these things.

My SD16 doesn't remember to do stuff. Turns out her phone alarm and post it notes are our best friend. If she needs to do 5 things in an afternoon at different times she gets 5 alarms set and 5 post it notes. She's not yet "doing it for herself" but I have a plan for the next holiday around setting up self care routines for morning and evening to help her learn to plan her own time. I've also learned to not assume she knows how to do things like apply barrier cream to prevent eczema. She argued with me over watching some videos to review her techniques, watched them ungraciously and denies that she learnt anything but she's got far fewer flare ups than before. 

We are about to do a mass kitchen labelling session before her next visit as she claims she doesn't know where to find stuff. Although she does spectacular teen eye rolls at the white boards in kitchen and living room, we catch her taking glances at them if we end up writing a reminder for us to remember something for her. Her older sister (has ADHD) now will write on them.

I guess my main thing is be creative, expect to fail spectacularly at times when you try ways to support your daughter acquire skills. We still can't get her to understand that her asthma symptoms are bad enough for daily treatment but our GP did convince her to have a 'flu vaccine.

Be prepared to teach. I still laugh remembering how SD20 said she couldn't use tampons because she was too small so I got out a toilet roll and used it to explain how far up the tampon needed to go, then got a bit of KY jelly and showed her how it was easier to push into a clenched fist. We also talked about both giving birth and intercourse and how big various parts were. My partner walked into the room as we were looking at a courgette and decided he should go out into the garden for 20 minutes. Later I explained to him what we'd been discussing and he was so grateful I hadn't been afraid to talk like that to her. Subsequently SD20 has confided in me a lot and her mother although she provided facts didn't answer any questions she thought were "dumb" and didn't offer basic support to do difficult conversations. In the next couple of weeks I will be going with SD20 for her first smear. I've promised I'll stay and I've already explained to our practice nurse that SD20 needs her to talk every step through.

Thanks for the supporting words it's been such a long process and tough for her she is amazing and always smiling she is my inspiration 

The diagnosis is not based on laboratory tests(or investigations). It is mainly based on clinical assessment of the child. There are some laid down criteria that if a child meets, he or she will be said to belong to the spectrum. I am not an expert in this field. I am only an informed parent of a child that belongs to the spectrum.

i I wondered if you could tell me how a doctor who test to see if my son is autistic. My partner seems to think some of my sons characteristics match that of a child with autism. My niece is quite low on the spectrum and he thinks that our son may have similar traits.

We have a doctors appointment booked but I just wondered what a test would entail

Many Thanks

I would advise you to get your daughter fully assessed by a team of multidisciplinary professionals(Paediatric Neurologist, Dietician, Speech therapist, Occupational therapist, etc) to ascertain her peculiar needs. This was what we did with my now thirteen years old son. It was done in Red Cross Children's Memorial Hospital Cape Town in South Africa. After the assessment, we were given several options to choose from. Do no give up, there is some light in the tunnel.