#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.

[clickToTweet tweet=”The #Truth about #Autism that the world needs to understand. @hollyrpeete @autismsociety” quote=”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 “]

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.

 




27 Comments

  1. 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 do more.

  2. 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.

    • I happen to be among those who can at least get some things covered by insurance. So many people can’t even get that. That said, even though some things are covered by insurance, actually obtaining those services can be next to impossible because there are very few places actually providing these services.

      it’s quite common to see waitlists over 6 months long. There are no support groups for parents or play groups for kids. There are major issues within the education system for kids on the Autism Spectrum.

      Kids with developmental disabilities like Autism and their educators are held to the very same standard as their typically functioning peers. Schools are then punished for lower test scores.

      There’s also a massive shortage of therapists who specialize in Autism. It’s almost impossible to find a psychiatrist for kids with Autism because there simply aren’t enough to go around.

      Things like sensory friendly movie nights are unavailable in most areas but are if you’re willing to make a longer drive.

      This is just a quick sharing of my thoughts. My brain is fried at the moment but I hope I answered your question.

      • Some of what you’re talking about is largely dependent on your geographic location. In some areas there are countless programs, services, etc. It’s really the same as other medical issues – if you want the best treatment/services you have to go to where the best doctors are, and sometimes that means you have to travel.

        I get what you’re saying though – how it is possible, with something that has become so prevalent like autism, that there aren’t enough doctors/therapists/services/support groups, even in less populous areas? If there are 6 month waitlists, there is obviously an overwhelming need. Let me ask this though – is there a waitlist if you wanted to see a non-participating provider? If not, then it’s more of an insurance/economic issue, as the resources are there. Still a big problem, but a different one.

        Some of these things – at least the nonmedical ones – can become available if people get together and ask for them. If there is a need for sensory movie nights, the local movie theatres will have them – it costs them very little, if anything (if there is truly a demand for it, it’s a moneymaker if they want it to be) and it allows them to promote themselves as “autism friendly.” Local hospitals will sponsor support groups if there is a need. Support groups can be formed at local libraries, etc. Doesn’t have to cost anything except someone’s time to organize them.

        The school issue that you mentioned is a tremendous problem, but then again, those school issues are not limited to kids with disabilities – kids with socio-economic disadvantages, etc. Also, getting back to the geographic issue – the school problem might be seen now as more of a state by state issue, as the Every Student Succeeds Act, seems, at least from my understanding, to give more accountability to the states than did its predecessor, the No Child Left Behind Act. These things can and will vary wildly by state.

        What it comes down to is that change for many of these issues can probably be best effectuated on a local level.

  3. 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 way to make that any cheaper or easier.

    • I’m not sure of any public schools dedicated to kids with special needs. If you’re referring to the boy’s school, it’s a private charter school. You are correct that at least we have those. smile

  4. 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 emergency support.

    Eventually a private company was found that could give him the 2-1 support needed at great expense in a sole use building that had to be sourced and fitted out just for him. This took two years in total to attain. Now we have a day service from 9-3 during the week.

    Sadly now there are no respite companies available through our NHS or local council/social services that can give me any kind of overnight or weekend respite. My son has never accessed any kind of respite where I have been able to get a rest or a break. There is simply nowhere for him to go with his level of Autism or challenging behaviour that our services can find or pay for. As a single mum of two children with disabilities I am horrified by the local goverment cuts and attitude towards Autism. The future does look bleak for our young adults sad

    • Thank you, Hilary, for sharing. I know so many people face similar challenges and that’s exactly what I’m trying to show the world. I wish you the very best of luck and hope that you continue to share your insight and experience.

  5. 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.

  6. 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 what solution do you have? You certainly can’t force someone to become a therapist or psychiatrist for autistic kids. I guess I’m confused as to why you think these should be Government issues. I understand that the autistic community is growing and important, but so are lots of communities. Cancer, MS, Parkinson’s, Myesthenia Gravis, HIV, lupus, Alzheimer’s, arthritis, COPD, cystic fibrosis… every diagnosis out there grows in numbers as the population grows, and none are more or less important than the others. As a cancer patient, I’d love to have some Government help in paying off my $50k in medical bills, but that will never happen.

    And if I’m honest, I find it almost insulting that you think there isn’t enough help out there. The very existence of your family depends upon Government help and programs. You have a wife and two children who receive disability, and the entire family gets free health and dental care. I have no idea how much you earn with your other endeavors, but I’m sure it can’t compare to the amount of money the Government spends on your family. If you want to see change, then follow Gandhi’s advice and be the change you want to see in the world.

  7. It’s important to understand that before too long, neurotypical people will be in the minority. I know there are a multitude of or health issues out there but I’m focusing on one right now, so please don’t take offense.

    Also keep in mind that we are talking about children and the future of our society. The better we do at a younger age, the better we do when they are older.

  8. 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.

    • Kim,
      You’re missing the point. I’m also not talking about just my family but rather a community of parents raising a child with a condition that is growing at epidemic proportions.

      Per Autism Speaks

      Did you know …

      Autism now affects 1 in 68 children and 1 in 42 boys
      Autism prevalence figures are growing
      Autism is one of the fastest-growing developmental disorders in the U.S.
      Autism costs a family $60,000 a year on average
      Boys are nearly five times more likely than girls to have autism
      There is no medical detection or cure for autism
      National Institutes of Health Funds Allocation

      Total 2012 NIH budget: $30.86 billion
      Of this, only $169 million goes directly to autism research. This represents 0.55% of total NIH funding.

    • If you have nothing nice to say then sometimes it is better to say nothing. You have no idea what a family goes thru with a child with autism. And the fact is that the hard truth is coming out that most autism is caused by the vaccines themselves. So I do feel that the government should help families care for these children. And please believe me the services are typically substandard at best! Which for most parents is heart breaking that we are placed in the same category as welfare recipients. Which is a discriminating place to be all the time. I am also struggling with a cancer diagnosis, before you say I can not understand your plight, I can! And you have NO idea what we go thru wondering what on earth will happen to our beautiful children if something happens to us parents. So please stop judging if you can because we deal with it all day and I think it senseless that we have to deal with it online in a group where we are supposed to find some comfort and support and peace! And until you have walked a mile in someone’s else’s shoes…..
      have a great day!

      • My heart goes out to you and I pray for only the best. What you said is something I think most Autism families can relate to. While I don’t agree with the comment about vaccines, as the science actually definitively proves the contrary, I do respect your right to believe that.

        We don’t have to agree 100% in order to be empathetic, supportive and compassionate to our fellow special needs parenting counterpart. We’re all worried about many of the same things and we all want what’s best for our kids.

        Thank you for sharing your thoughts. It was really nice to meet you.. ☺

  9. 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*

    • If that’s what you’re finding where you live, count yourself lucky.. That’s definitely a good thing.

      • Just add on to Braden’s point, a “private charter school” isn’t really a thing — in most places. Typically charter schools are publicly funded and don’t charge tuition. They’re run by private entities, but if they don’t comply with the terms/performance standards of their charter, public assistance is cut off, and the school, in all likelihood, will be closed. In most instances, they have to employ licensed teachers (private schools don’t). However, Ohio is a weird state when it comes to charter schools – there are many ways for Ohio charter schools to avoid government accountability. Unfortunately Ohio is notorious for large numbers of its charter schools squandering tax dollars, and acting without any transparency, but Ohio law makes it very difficult to shut down charter schools.

        So when Rob is calling the boys’ school a “private charter school” my guess is that he calls it that because it’s privately run and with a lot less governmental oversight and transparency than one might typically expect to see from a charter school in other areas. Now that I think about it, that probably ties into the bizarre way they dealt with the bullying situation which thankfully seems to be resolved….

        Sorry – just happen to know a little about charter schools and how they operate in different states…

        • Correct. Charter schools are considered alternative learning institutions that are often privately funded with very little government oversight. Things like common core still apply, as do educational standards and state testing requirements. Some charge tuition and others are free. There are two other Charter schools for spectrum kids but they run roughly $15,000/year…

  10. 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)

  11. *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 shy? Must be Autism. He likes the feel of sticky stuff on his hands? Must be Autism. She can do math in her head and likes to line things up? Definitely Autism. Based on the current criteria, I have little doubt that I would fall somewhere on the spectrum if tested, and I’d bet money that you would too.

    So, are Autism diagnoses up? Yes. Is it being over-diagnosed? I would also bet money on that and I’m not the only one. I can’t figure out how to add a link, but I found several things of interest when I did a search. These are both from 2015:

    http://www.nbcnews.com/health/kids-health/study-suggests-autism-being-overdiagnosed-n450671

    https://www.disabilityscoop.com/2015/10/27/government-study-autism/20907/

  12. *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 shy? Must be Autism. He likes the feel of sticky stuff on his hands? Must be Autism. She can do math in her head and likes to line things up? Definitely Autism. Based on the current criteria, I have little doubt that I would fall somewhere on the spectrum if tested, and I’d bet money that you would too.

    So, are Autism diagnoses up? Yes. Is it being over-diagnosed? I would also bet money on that and I’m not the only one. I can’t figure out how to add a link, but I found several things of interest when I did a search. These are both from 2015:

    http://www.nbcnews.com/health/kids-health/study-suggests-autism-being-overdiagnosed-n450671

    Government Study Suggests Autism Overdiagnosed

    • Do you know how incredibly difficult it is to get a child on SSI for Autism? Very difficult. It’s not automatic…..

    • We don’t always agree but I’m not sure you have any idea what raising a child with Autism is like. They estimate the cost per year, per child to be $60,000… Your comment is full of stereotypical assumptions and frankly, your comment has nothing to do with this post. This is one comment that you and I will not agree on.

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