Published on 12, July, 2020
Hey everyone
just wondering if we have chosen to do the right thing really.
my 9 yr old son is HFA (sorry if that term offends anyone but it’s just what’s been communicated to me. We have been given a referral for an assessment with a community paediatric. We was going to get a private assessment as it’s suspected his needs will be quite minimal but was told that he may not get the support he might need if we go down this path. we were told by the Gp that waiting lists in our area are 6-12 months and that we would be wise to stay with that going forward.
We are struggling to know if we are doing the right thing for him and just wondering if any of you had any advice please?
Thanks for reading
Thank you. Duly noted.
i just spoke to his therapist today and she said that the community paediatrician is probably just to triage, and as he’s not having significant problems right now he would then go onto another waiting list as he wouldn’t be a priority. I think that I will stick with the NHS approach but may also get a private assessment just to make that transition a little smoother, hopefully then like you said if anything does happen in the near future he would be covered.
Thank you so much for your responses
I think the important thing is that the diagnosis is in place before he has to make the huge transition from primary school to secondary. That's when the wheels really start falling off for many autistic children. He may appear to 'function' quite well now in the environment he is in but put him in a vastly different secondary school environment and it might be a completely different story.
The last thing you want is for the education system to refuse the support he will need at that stage because they don't recognise a private diagnosis. To be on the safe side I would say stay on the NHS list even if that means waiting a year. That waiting time is still substantially shorter than many adult lists.
At some point in the future your son is probably going to need special treatment or special allowances to be made for him because he’s autistic.
even if the diagnosis doesn’t translate into support right now it might be really important after there’s been an incident or a problem that people didn’t foresee happening.
people tend to put the same expectations on high functioning autistic people that they do on everybody else including the expectations to navigate social situations without causing offence or upset or having their own mental breakdowns. Because high functioning autistic people appear as intelligent as everybody else it’s really helpful to have a piece of paper that says ‘with regards to social skills you have to modify your expectations of this person.’
Getting an assessment as an autistic person isn’t just about the support. We have a strong set of anti-disability discrimination laws in the UK. Getting that diagnosis makes it a lot easier to rely on those laws if you ever have to enforce your rights.
say hypothetically down the line your now 15-year-old son gets into a misunderstanding with someone at school caused by his autism. The school takes the incident so seriously that they expel him. It’s going to be very hard to bring up disability discrimination as a factor to try and fight that expulsion if you don’t already have the diagnosis.