Published on 12, July, 2020
I was wondering if it is all about my bad luck or it is just reality. My son is 4 years old and has been diagnosed with ASD. He has sensory processing difficulties too. I remember that after a diagnosis what we received was a leaflet with information about the disability and nothing else. Luckily we have S&L therapy sessions but it is every three months?! Today I read that: "Experts believe that the first 5 years of the child's life are the most crucial and that is why intensive help before school is important, although intervention at any age is beneficial.". My question is: who is responsible for that intervention in this country? Rich parents who can afford private treatment? I fight for better life for my child and NHS specialists say that they cannot help me because of long cues or lack of government funding.. Does it mean that this country leaves us with no choice? I am so disappointed and do not know what to think about it whether it is a problem that we are not British or it is the same for everybody living here in the UK. Maybe I am wrong, but I feel that you fed up with immigrants and it is understandable. On the other hand everyone should be treated equally because it is not our fault that our child experiences such difficulties. Every parent wants to have beautiful, healthy children..
Hello, I'm sorry that you are facing such an anxious time.
I have been on this forum about 3 months now and regularly hear from parents all over the UK who are frustrated with the services provided for their children, many of whom wait years to obtain an official diagnosis in some parts of the UK. I can understand why you might begin to believe that, in your own case, this long period without support and guidance is related to your immigration status but please be assured that it is not. Many parents are facing the same frustrations.
It tends to be the case that people who are better informed of their rights and who fight for those rights are the ones who have more success navigating the system. To that end, it would make sense to arm yourself with as much information as possible so that you know exactly what your (and your son's) rights are.
Have you tried phoning the NAS helpline? Or one of the other autism helplines, perhaps one based near where you live? They should be able to advise you of the interventions your son can access at his age and they may be able to suggest organisations in your area that can help and support you to fight for these things.
The Citizens Advice Bureau (or CAB) should also be able to offer you support and guidance and can direct you to other organisations.
This NAS website also has lots of information pages on things such as local parent support groups, just search it to see what is available in your area. I think it would be of enormous help for you to meet other parents in your area, not least because you can gain knowledge and support from other parents but also you will get a clearer idea of the difficulties other parents face. Not everyone in the UK is "fed up with immigrants" and I hope you do find the support you deserve.
Thank you for support and kind words. I have been to my local CAB and asked for help in terms of EHCP but they did not know what it is and even were not able to spell the abbreviation correctly. They started looking for some information about it on the Internet and were asking me a lot of questions to find out what it is. Honestly, I wasted my time there..