Where's the help????

Hi all!

Just after a bit of advice from the more experienced autism parents out there.

I've known my son was autistic from 15 months old. He's now 3 and a half and is quite severe, non verbal,  no understanding severe sensory issues etc etc. 

From all of my own research all your hear about is the importance of early intervention,  blah blah blah, so when he was diagnosed bang on 3 years old I was relieved as believed we would now be inundated with these interventions and help I'd constantly read was sooo important. 

How wrong I was!

Since diagnosed 5 months ago there's been nothing. All he gets is a speech and lang appt every 4 months. 

Where's the help?

It's like they kind of go "yes your child is autistic,  he may or never talk may or may not need care for most of his life, bye have a nice life!"

Oh,  and a few leaflets. 

Now I know some parents are happy to just ride out the autism train and let their child progress naturally and don't feel the need to intervene in their child's autism, and I respect that.

I, on the other hand, feel as though I am failing him by not trying to get him all the help and intervention I can. I want him to have as normal life as possible,  and while I know we will never "cure" him, I can help him come into the world a little bit. But I don't know how.

What treatments/therapies are out there that are accessible?  I've an American friend who's child has weekly OT, music therapy, swimming therapy,  ABA so on. So many interventions she has trouble fitting them in! I'm not naive enough to know the NHS would provide all that but do they really offer absolutely nothing?

Not one therapy or treatment? 

So I figured ok, I'll try and pay for something.  I can't even find anything to pay for! It's like there's nothing in this country,  or am I not looking properly? 

Sorry for the rant but can't find anywhere else to ask!

Parents
  • Is there a parents group (Local NAS or independent) in your area? Even if it is not immediately local they have support and resources you may be able to utilise.

    On the NAS Home and Community pages you'll see in one corner a red/pink map of Britain. This provides means of searching for local services in your area. The search engine isn't always helpful, in that you may keep getting London based services at the top of a list even when you are searching the other side of the country, but if you scroll down you'll usually find something.

    Even if you find a group that's too far to reach, ask them as they may know of a support group more local to you.

    The benefit of a parents group is you can meet other parents, share advice and experiences (which you can do here but sometimes it is slow to start). Some parents groups run training sessions, and they wil have lists of support services both free and pay for.

    With autism it really pays to network, and a parents group is a good start. Meantime hopefully you'll get more replies. Start of school holidays in some areas; I guess its just a little quiet just now.

Reply
  • Is there a parents group (Local NAS or independent) in your area? Even if it is not immediately local they have support and resources you may be able to utilise.

    On the NAS Home and Community pages you'll see in one corner a red/pink map of Britain. This provides means of searching for local services in your area. The search engine isn't always helpful, in that you may keep getting London based services at the top of a list even when you are searching the other side of the country, but if you scroll down you'll usually find something.

    Even if you find a group that's too far to reach, ask them as they may know of a support group more local to you.

    The benefit of a parents group is you can meet other parents, share advice and experiences (which you can do here but sometimes it is slow to start). Some parents groups run training sessions, and they wil have lists of support services both free and pay for.

    With autism it really pays to network, and a parents group is a good start. Meantime hopefully you'll get more replies. Start of school holidays in some areas; I guess its just a little quiet just now.

Children
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