#Autism: The Unpleasant Truth



I’ve been connecting with so many new Autism or Special Needs parents lately. While this is such a cool thing for me because connecting with others in a similar circumstance is a positive thing.

At the same time, it’s heartbreaking because there are so many people out there who are isolated, scared, overwhelmed and feeling hopeless.



What’s become clear is that, based on my personal experience, as well as interactions with parents from all over the globe, there isn’t enough support, services, understanding or even compassion. Frankly, it’s not even almost enough.

When someone with Autism turns 18 years of age, there isn't some magical fairy that comes along and removes all the challenges they've faced up until that point in their lives. Many if not most of those challenges are life-long in nature and these people need help. - Rob Gorski Click To Tweet

Somethings wrong when the fastest growing childhood developmental disability in the world doesn’t have some national/international infrastructure that directly helps families seek out and obtain early intervention services. There’s something wrong when parents burn out because raising a child with Autism is 25/8/366 (sometimes for the rest of a parent’s natural life) and things like respite are not available or affordable to everyone.

There’s something seriously wrong with a society that seemingly abandons kids with Autism once they cross that arbitrary age of 18 and enter into adulthood.

When someone with Autism turns 18 years of age, there isn’t some magical fairy that comes along and removes all the challenges they’ve faced up until that point in their lives. Many if not most of those challenges are life-long in nature and these people need help. Things like housing, employment, and support services are almost nonexistent in some cases.



That’s a travesty.

These aren’t isolated incidents either. These issues cross local, state, national and international borders. I have readers in almost every country around the world, and there are common threads in everyone’s story.

The point is, these problems are universal. Sure, some places are better equipped than others. Some people are blessed to live in places where services may be widely available, but this by no means represents the whole of the worldwide Autism community.

I’ve gotten away from really sharing my thoughts on things like this but hearing all these stories has helped me remember that I have a voice that carries weight in this community. I want to focus more on speaking about things that need to be spoken about.

Are there issues that you are concerned about or that impact your family directly? Please take a minute and share the things that concern you in regards to being an Autism parent or a person with Autism.

I’m happy to publish guest posts and help you be heard by the community. We’re all in this together and if there’s anything in the world worth coming together for, it’s our children.

Let me know how I can help.

 

Related posts:

Leave a Reply

25 Comments on "#Autism: The Unpleasant Truth"

Notify of
avatar
Photo and Image Files
 
 
 
Audio and Video Files
 
 
 
Other File Types
 
 
 
Member
We didn’t know Jacob was high-functioning autism until after he had a disastrous year in college. He is so intelligent that he tried to act like us. That masked his disability. Now, in Ohio the Bureau of Vocational Rehab does some help. It’s not specific to autistic people, but helps all disabled people. Jacob finally has worked for a couple years but in a since, it’s a tragedy. His intelligence is so high! If only he could sit still in a class. He can’t tolerate ADHD meds, either. So I’m proud he’s functioning well, but I still hope he can… Read more »
Braden
Guest

Using your family; Could you offer up some specific things that are needed that are not provided?

I feel like the awareness is quite high at this point and with one in under 70 being considered on the spectrum, I’m curious what is being missed.

Braden
Guest
I guess I feel a lot of that (movies, quiet times at stores, support and play groups) should be on the parents to organize and seek out. As far as schools…I’m sure if can get better (it always can), but the fact that they have public schools SPECIFICALLY for special needs children is leaps and bounds above what it once was…that didn’t exist unless you went private not all that long ago. As far as insurance. I don’t know how to address that…doctor visits are expensive. Period.. it sucks if you need to go frequently, but I cant envision a… Read more »
Hilary
Guest
Hi just thought I would share what we are missing in the UK. My son has just turned 19 and to say the the transition into adult services has hit me like a brick is an understatement. Firstly his behaviour has deteriorated to such a degree that his school could no longer cope and despite a year of searching the local area the local council could not find a placement for him that could deal with his level of challenging behaviour, he was excluded from school and I was left to care for him full time with only 21 hours… Read more »
Dotdash
Guest

It is, sadly, going to get worse, not better. When Medicaid coverage is switched to block grants to the states rather than reimbursements by the federal government, there will be less money and more people competing for it. When insurance companies aren’t forced to provide coverage, you can bet that they won’t. This election has dealt an enormous blow to anyone who was hoping our country would provide compassionate care based on needs.

Kim Gebhardt
Guest
I read this earlier today but was out all day so this is the first chance I’ve had to reply. I’m curious what you want to see happen. You mention play groups and sensory friendly movies, but those are things that you can ask for or get started on your own. Get a group of parents together and try to offer respite care to one another. Talk to the parents at the boys’ school and start a play group or support group- these are things that have nothing to do with any infrastructure. You mention a shortage of therapists, but… Read more »
Kim Gebhardt
Guest

I’m not taking it personally, but you really do come across as though you believe that the Autism community deserves special treatment over groups with other diagnoses. It’s like you have no idea how much the services your family gets would cost if you weren’t getting them for free through Medicaid.

Braden
Guest

Charter schools are public. As in paid for with tax dollars and do not charge tuition. Other areas have special needs speciality centers within the school. I have lived in multiple states and the availability of the services are practically a given at this point. Which is a good thing, they just need to qualify for it.

*’Added as a new post because reply doesn’t work*

Braden
Guest

I think your comment about ‘neurotypical’ people being in the minority soon is more an indictment on society and our need to have something medically wrong if we aren’t perfect.

And I will add here since comments aren’t working for me….to respond to me being lucky with the services offered in my area, to second an earlier post, I think a lot of if this is more socio economic than it is awareness.

Anyway, my two cents (or 6-7 cents by now)

Kim Gebhardt
Guest
*Cannot reply to posts so I’m posting this as a new post* I feel like the 1 in 68 number is inaccurate; part of it is because the spectrum is ever-changing. There are newer studies which suggest that Autism is being over-diagnosed, and part of that is so that parents can get SSI for their kids. It is especially true in lower income areas and there is always a doctor who will say that a child has ‘X’ and then prescribe ‘Y’ so that they can get some Government assistance. What used to be Asperger’s is now Autism. Kid seems… Read more »
Kim Gebhardt
Guest
*Cannot reply to posts so I’m posting this as a new post* I feel like the 1 in 68 number is inaccurate; part of it is because the spectrum is ever-changing. There are newer studies which suggest that Autism is being over-diagnosed, and part of that is so that parents can get SSI for their kids. It is especially true in lower income areas and there is always a doctor who will say that a child has ‘X’ and then prescribe ‘Y’ so that they can get some Government assistance. What used to be Asperger’s is now Autism. Kid seems… Read more »
wpDiscuz
30 Shares
Buffer13
Share8
Tweet3
+13
Share2