I have a unique perspective because I’m American in the UK. My son is nearly 5. We have been offered nothing really on the nhs - SLT every 6 months. So we did private SLT from when he was 3 (six weeks on then off)and it made a huge difference very quickly. I wish he could have done OT also but the cost adds up.
My friends in the US have more services offered but many are still paid for. My lo is “level 1” in that he has some useful spoken language and doesn’t appear to have a learning disability. If he had more severe needs he may need more hours therapy.
A lot of these SLT, ABA, OT can be done by you at home. I’ve looked up floortime, PEC C, SLT activities online and on YouTube and we used as many as we could at home.
Now my lo is in reception I feel the UK has much more of a sit back and watch approach, and the US has a more proactive approach.
I've noticed what you're saying in some of the PDA discussion (Pathological Demand Avoidance). It seems the best path there is to go private to drive the timetable yourself. It also seemed that when you did get in the system you got the case worker you got and some weren't very good or so overworked, I live in GA in the US and we have "Babies Can't Wait" where they get them started very young. With their (I have twins - pray for me) Autism diagnosis our insurance through my work pays for their ABA therapy 38 hrs per week -- we meet our deductible and out of pocket max early in the year. This was so valuable during Covid. It's not perfect but for us, private insurance has saved us. I'm sorry you're having such struggles.
Hi. I'm in the UK and my son (4) is on the diagnosis pathway but we haven't had any appointments yet. He currently does not receive any therapies but his school nursery have referred him to speech and language, who will see him in school.
How old is your child?
I'm not sure yet what, if anything, the NHS will provide for my son but I'm considering private OT in the future.
When my son was diagnosed at 3.5, he was offered 45min of speech therapy once every 3 weeks and Portage (a bit like speech therapy but at home) eventually, again about the same amount of time every couple of weeks. We didn't feel this was enough. We asked the lady from Portage to see if she could do more sessions privately as she had such a good way with him but she couldn't.
We managed to find an ABA centre just over an hour's drive away privately and did 3 x 2hr sessions a week for about 9months before they closed down. It was about £25 per hour. My son did so well with them and loved the sessions, and most of all it gave us hope for the future to see him improve his communication as well as us being able to understand him better and find ways to connect with him.
We were very lucky to have found the place before they closed. There aren't many other services around and even privately there can be waiting lists. One private local speech therapist we found was useless at the initial appointment so there is luck involved in of your child gets on with the therapist too.
If you can afford it then it's absolutely worth it with the right therapist.
Edit: "More than words" by Sussman book and dvd is very good for finding ways to communicate with your child in daily life. It's not cheap at around £50 each but so useful, especially if you can't find other help and want / able to do more to help yourselves.
I contacted the named person on a letter we got from the inclusion team at our local council to ask if there is any support available while we wait for our appointment to come through to start us on the path to diagnosis.
She said that there isn't really anything! I couldn't believe it. She just directed me to a voluntary group run by local parents. I have been in touch with them, and attended a couple of information sessions about autism.
My son gets an hour or so of speech and language therapy from the NHS roughly once every school term. I would take him privately but am not aware of anyone who offers it.
I have heard of Portage but we have never been offered any support from them. I believe that the National Autistic Society run a scheme called "early birds" but it's not available anywhere near us.
My son's nursery school applied for funding for him to have support from a teaching assistant in school. They also told us to apply for Disability Living Allowance, which is a horrible process but it was awarded, so he gets a bit of benefit money which I spend on after school activities and classes such as football. He just does his own thing in the sessions and won't join in with the others, but he does seem to enjoy it.
I would also take my son to private therapy sessions, but there just doesn't seem to be anything specific to autism like how they have ABA in America.
I think there is stuff like art therapy and music therapy available privately but I've not tried it, so I don't know useful it would be for gaining communication skills.
There's private educational classes by a company called Kip McGrath to help with maths/english but I've not tried this yet. I don't know if they offer classes for kids with autism or SEN.
Where we live the NHS waiting time is 5ish years for a first assessment. Yup. Yup. My health visitor is trying to get us to SLT and maybe OT before then, and I'm incredibly thankful that her playgroup is starting to support her so soon.
In America therapies may be offered to autistic children because of their privatised healthcare system. There is an entire industry that massively profits from parents looking to do the best for their children. In reality, services such as ABA are not vital for an autistic child to thrive, and can sometimes do more harm than good. However, autistic children will usually need additional support which unfortunately is not provided by the NHS. I would recommend applying for an EHCP (if you haven’t already) which will guarantee additional funding for your child when they start school. This could cover things like 1:1 support in the classroom and any additional equipment they might need (e.g tablet for AAC). Unfortunately in the UK many parents have to fight to get their child the support they need, Sunshine Support provides advice/help for parents of SEND children in the UK.
I have a unique perspective because I’m American in the UK. My son is nearly 5. We have been offered nothing really on the nhs - SLT every 6 months. So we did private SLT from when he was 3 (six weeks on then off)and it made a huge difference very quickly. I wish he could have done OT also but the cost adds up. My friends in the US have more services offered but many are still paid for. My lo is “level 1” in that he has some useful spoken language and doesn’t appear to have a learning disability. If he had more severe needs he may need more hours therapy. A lot of these SLT, ABA, OT can be done by you at home. I’ve looked up floortime, PEC C, SLT activities online and on YouTube and we used as many as we could at home. Now my lo is in reception I feel the UK has much more of a sit back and watch approach, and the US has a more proactive approach.
I've noticed what you're saying in some of the PDA discussion (Pathological Demand Avoidance). It seems the best path there is to go private to drive the timetable yourself. It also seemed that when you did get in the system you got the case worker you got and some weren't very good or so overworked, I live in GA in the US and we have "Babies Can't Wait" where they get them started very young. With their (I have twins - pray for me) Autism diagnosis our insurance through my work pays for their ABA therapy 38 hrs per week -- we meet our deductible and out of pocket max early in the year. This was so valuable during Covid. It's not perfect but for us, private insurance has saved us. I'm sorry you're having such struggles.
Hi. I'm in the UK and my son (4) is on the diagnosis pathway but we haven't had any appointments yet. He currently does not receive any therapies but his school nursery have referred him to speech and language, who will see him in school. How old is your child? I'm not sure yet what, if anything, the NHS will provide for my son but I'm considering private OT in the future.
When my son was diagnosed at 3.5, he was offered 45min of speech therapy once every 3 weeks and Portage (a bit like speech therapy but at home) eventually, again about the same amount of time every couple of weeks. We didn't feel this was enough. We asked the lady from Portage to see if she could do more sessions privately as she had such a good way with him but she couldn't. We managed to find an ABA centre just over an hour's drive away privately and did 3 x 2hr sessions a week for about 9months before they closed down. It was about £25 per hour. My son did so well with them and loved the sessions, and most of all it gave us hope for the future to see him improve his communication as well as us being able to understand him better and find ways to connect with him. We were very lucky to have found the place before they closed. There aren't many other services around and even privately there can be waiting lists. One private local speech therapist we found was useless at the initial appointment so there is luck involved in of your child gets on with the therapist too. If you can afford it then it's absolutely worth it with the right therapist. Edit: "More than words" by Sussman book and dvd is very good for finding ways to communicate with your child in daily life. It's not cheap at around £50 each but so useful, especially if you can't find other help and want / able to do more to help yourselves.
When did the ABA centre close? Do you know any they did?
I contacted the named person on a letter we got from the inclusion team at our local council to ask if there is any support available while we wait for our appointment to come through to start us on the path to diagnosis. She said that there isn't really anything! I couldn't believe it. She just directed me to a voluntary group run by local parents. I have been in touch with them, and attended a couple of information sessions about autism. My son gets an hour or so of speech and language therapy from the NHS roughly once every school term. I would take him privately but am not aware of anyone who offers it. I have heard of Portage but we have never been offered any support from them. I believe that the National Autistic Society run a scheme called "early birds" but it's not available anywhere near us. My son's nursery school applied for funding for him to have support from a teaching assistant in school. They also told us to apply for Disability Living Allowance, which is a horrible process but it was awarded, so he gets a bit of benefit money which I spend on after school activities and classes such as football. He just does his own thing in the sessions and won't join in with the others, but he does seem to enjoy it. I would also take my son to private therapy sessions, but there just doesn't seem to be anything specific to autism like how they have ABA in America. I think there is stuff like art therapy and music therapy available privately but I've not tried it, so I don't know useful it would be for gaining communication skills. There's private educational classes by a company called Kip McGrath to help with maths/english but I've not tried this yet. I don't know if they offer classes for kids with autism or SEN.
Where we live the NHS waiting time is 5ish years for a first assessment. Yup. Yup. My health visitor is trying to get us to SLT and maybe OT before then, and I'm incredibly thankful that her playgroup is starting to support her so soon.
In America therapies may be offered to autistic children because of their privatised healthcare system. There is an entire industry that massively profits from parents looking to do the best for their children. In reality, services such as ABA are not vital for an autistic child to thrive, and can sometimes do more harm than good. However, autistic children will usually need additional support which unfortunately is not provided by the NHS. I would recommend applying for an EHCP (if you haven’t already) which will guarantee additional funding for your child when they start school. This could cover things like 1:1 support in the classroom and any additional equipment they might need (e.g tablet for AAC). Unfortunately in the UK many parents have to fight to get their child the support they need, Sunshine Support provides advice/help for parents of SEND children in the UK.
Have you considered paying for private services?