Autism – the ‘Lost Generations’

Artwork by Maria Zeldis

Artwork by Maria Zeldis

Our  societies system of assessing and coordinating services and supports to families and young adults with disabilities has been developed on the basis of a significantly misinformed analysis of what certain types of disabilities actually are and how they occur.

In short this system is fundamentally flawed at its very core. This in turn has caused the denial of services to those with  misunderstood conditions such as Autism and Asperger’s Syndrome, particularly for women and girls.  But it’s not all rosy for boys either, many of whom still miss out on receiving vital medical, educational, financial and workplace supports due to the fundamental errors this system makes in defining and deciding the level of  functional severity required to qualify for support.

As a society we like to think that greater levels of recognition will create greater levels of support and understanding but  in the meantime… we are now facing the largest en mass wave of young adults with Autism and Asperger’s ever to enter into our communities and those young adults need support services now.

It’s not good enough to say that we either don’t qualify for, or have to wait years for support. We need support services now otherwise we as a society will have to own up to knowingly  creating  “Autism’s Abandoned Generations”….

Those whose differences are noted  by professionals yet not considered severe enough, by more professionals,  to warrant  the support that many parents and young adults  with Autism themselves declare that they need.  As parents many of us of have been shouting from every corner of the globe trying to raise awareness of  the ways in which our children and young adults have been made to suffer the ignorance’s  and intolerance’s of a system gone so completely wrong.

We encourage our young adults to speak for themselves and many of them now are, and have been, for quite some time….

The problem is… they are not being listened too any more than we  as parents were listened too when we first spoke up and out for our children.  Politicians and medical professionals continue to ignore the immense and continuously growing body of literature on Autism and Asperger’s written by adults and parents.  It seems that the experiences and understandings of adults with Autism and the parents who deal with the needs of autistic children on a daily basis and who are more often than not well-informed and well-educated, are still not being heard.

The only time professionals seem capable of changing their opinions is after the personal experience of having a family member diagnosed with Autism and even then, for now at least, those brave enough to admit to it, remain either in the minority or are ostracized.  So what will it take to amend this problem and why is there such a horrendous  level of resistance toward acknowledging the diagnostic mistakes of the past (Refrigerator Mothers & other Autism Myths)? Do any of us really believe that  reframing the method or manner of diagnosis within the new DSMV will do anything to address this?  I for one think that it’s time that our young adults and their parents heard the words “Sorry… We got it wrong……What can we do to help”…..  Wouldn’t that be nice?

(P.S.  Yes I know… globes don’t technically have corners!)

 

About these ads

105 thoughts on “Autism – the ‘Lost Generations’

    • My pleasure entirely. The more voices we have advocating for change the louder our message becomes… The louder the message the greater our chances of beign heard.. I thank you for al that you are doing = ).

  1. It’s amazing how the medical and educational communities remain blind to this problem. You are right – autism is on the increase, and not just because it is being more frequently/correctly diagnosed. (I grew up in the ’60s and autistic children were not diagnosed as such; they were simply labelled mentally ill.) Little, if anything, is being done to help these children and as you say, the problem only hits home when autism becomes a problem in the family. It is gaining some traction in the news, but policy changes are needed to help these children and their families.

    I noted this on CNN http://www.cnn.com/2012/04/25/us/new-jersey-autism-bullying/index.html?hpt=hp_c3 .

    Best wishes to you and your family. It has to be hard.

    • Thank you so much for your comments Eloise. Every time someone reads and expresses an understandng of what’s happening to children and adults with autism and their families within society awareness grows. So thank you. Seventh

      • Most welcome. I remember reading an article in the New Yorker about a family with three autistic children http://www.newyorker.com/archive/2003/12/01/031201fa_fact_sheehan . It was some time ago, and you may have read it (2003, which by now is old history).

        I did live in an area that was known for its medical facilities and the community addressed education of the autistic in a forward-thinking way; my next door neighbor was the teacher for all of the autistic children in that town. Unusually advanced, I’d say.

        I’ve also read “Born on a Blue Day” by Daniel Tammet, a high-functioning autistic. Amazing story. He is a savant who was able to remember the digets of Pi to some 20 thousand decimal places. Amazing. His brother was also a savant.

        I’m rambling here, but the difficulties of autism hold my attention. I did work with a volunteer group that worked with autistic children – not high-functioning. I have some notion of your situation but it would be presumptuous of me to say that it is anything more than that. I have not lived in your shoes.

        And as you say, what happens when these people become adults?

        Best wishes.

  2. Touche! Its very difficult to explain to people who do not have a cooking clue that a condition such as this and how it affects the persons value of life. Like you say though, it will take a politician who is personally affected to lobby in parliament for anything to be done to improve the situation. I even volunteered for any studies but the neurologist said there is no one in the UK conducting studies of my conditions right now.
    Depression is about the only mental condition the government really recognises or understands. We just have to hope things will improve and try live our lives as best we can until they do.

  3. Hi seventhvoice. Thanks for following my blog.

    You may have seen on my About page that I have Asperger’s. I can only imagine how different my life would have been if I’d had help when I was young. I didn’t even know what was wrong with me until I read an article about Asperger’s about 10 years ago. It’s sad to see people who need help not getting it.

    • I can only imagine how difficult life must have been for you. I agree that it is so sad to know that there are wonderful people like you out there who have missed out on vital support. I thank you so much for taking the time to respond to this post.

  4. Thought provoking and well written I have shared on fb as I know I have a couple of people with or with relatives who are effected by austism and the lack of intelligent information out there.

    thanks for stopping by my page and following

  5. Hi Seventh Voice, Wow, you write so much, I wish I had time to read it all. The posts I have read are so relevant. I am currently working on an episode of our own story that highlights exactly some of the issues you raise in this post about the issues of identifying, diagnosing and labeling, but after that there is very little resource to actually help until the child, young person or adult apparently ‘fails’ in terms defined by the rest of society. What people need is support and understanding to prevent this. I find it so depressing that my Son does not get support at school because his academic performance is above average. There is no recognition of the other difficulties he has at school and because he does not express his anxieties at school and bottles them up they overflow in other ways at home which is then not picked up or supported by any profession or assessment because it supposedly doesn’t impact on the rest of society. All the professionals tend to sit in their own little boxes without realising how much things are linked together and you can’t just isolate one lot of support from another.

    Thank you and thank you for reading and following my blog. Sorry its taken so long to reciprocate.

    • Thank you for your response Violet. I agree with you whole heartedly. So much more support and understanding is needed when it comes to helping those on the spectrum. I’m really enjoying your blog. Thanks so much for dropping by. Cheers Seventh

  6. So interesting to see so many of my own sentiments articulated here, even though I am operating from the teacher’s side. The school where I am employed has absolutely no services for children with learning, developmental, and/or emotional difficulties. Teachers are left to figure out by themselves which instructional methods work best, and as a result feel frustrated and lost. No one is trained in Special Education. Furthermore, parents often hide crucial information about their children when they apply to the school because their families believe that a privileged private school education will “fix” them. In actuality, many of these kids would find more help in public schools. I do feel that the presence of these students’ struggles has grown into more of the norm than the exception. But it would be nice to have some support.

    Thanks for following my blog!

    • Thank you for responding to this post. I agree with you that more effort in teacher training in the area of special needs is desperately needed. I’m not so sure that parents hide information about they’re children because they think any particular school will “fix” their children’s autism. I think it’s more the case that parents want their children to have an equal right to attend a private school and experience has probably taught them to be cautious regarding how much they reveal about their child. One of the key problems for private schools is that they’re funding and support systems operate in a very different and much more restrictive way than public schools do. This limitation creates a double bind for private schools who have to justify their expenditure to others. However, perhaps a greater issue in regard to this that needs to be looked at is the manner in which the education system, through it’s differentiated structures, positions children with ASD at a distinct disadvantage on all levels.

  7. Thank you for stopping by and subscribing.
    I have a friend whose son was diagnosed with autism only after she trekked around the world to find a doctor who could put a name on his condition. This was some 45 years ago when autism was only just being recognised. This is the only interaction I have had with autism so I was very interested to read this post.
    I love how the blogosphere educates us. Thank you.

  8. Reblogged this on little box of books and commented:
    I fully support the need to explore the effects of not supporting autistic children/adults and their families. The cracks are already filled with many other aflictions that never got support. You probably see one or two on the way to work each day.

  9. Thank you for dropping by my blog and following. I admire you and am happy to see another voice out there trying to help these innocent victims suffering from autism and Asperger’s. A woman I worked with once had 3 children with autism and my heart just went out to her. So much more research is needed. Best of luck to you and your family and thank you for educating the rest of us in whatever way you can.

    • Thanks K… not sure I’m comfortable with the term “victims suffering from autism”….. they are people with or experiencing autism. It’s society that paints them as victims by denying them the support and understanding they require.

      • I’m sorry. You’re right. Poor choice of words on my part. We are only victims if we choose to be victims and these people do not choose this affliction. I hope causes, cures and treatments can be found soon so this disorder can be eliminated forever.

  10. Hi, thanks for visiting my blog. I have a young relative with autism, and this post really strikes home. Fortunately hehas a wonderful support network in his family, including a mother who teaches special needs children. But there is so much research that must be done.

  11. I am really fascinated by people that have autism or who are autistic for they have the most amazing minds but I wondered if anyone could help me out on something – does their seem to be more and more people on this spectrum or is it because we are more aware of this different way of thinking.. I don’t know much to be honest but I would love to learn more, my friend has a slight aspergers and she generally will not accept anything and will question everything I think that’s something quite beautiful in a sense.. I really would love to work with children one day, who think differently and join them on their journey because I feel that maybe we start to see the world through different eyes and in these times it is much needed. I would more then anything love to research more about the mind and see if really it is changing – maybe evolving? It would be so interesting to find out.

    • Thank you Electric B… it’s wonderful to hear that you are so interested in learning more about Autism. I too share your wish to more fully understand those on the spectrum. As both a parent and a researcher I would be happy to offer you whatever information I can. There are lots of theories circulating out there about what Autism is, what causes it and how it works within the body. Genetic research is slowly providing a picture of Autism that indicates the involvement of both chromosomal deletions and replications. Neurologists claim that there is a difference in the brains structure of those with Autism. Some promote the notion of a cure whilst others promote the need for creating a reality that accepts and validates neurological difference. Currently Autism is defined medically as a neurological disorder. All of these different theories make trying to navigate a genuine understanding of Autism tricky. It does seem to me that there are more people with Autism in society now than there ever have been before. The many explanations for this are ultimately linked to whatever you believe most defines Autism in the present day. It really is a case of different strokes for different folks and until we have a definitive and quantifiable understanding of what Autism is and how it works… there will be no right or wrong answers. I agree that those with Autism view the world in a different and at times simply amazing way. I for my part choose to follow the path of acceptance and activism both with and on behalf of my son.

      • Thats ok, I think Its just something I fell into maybe because there are many films and books about it so in that it makes it more real and personal for everyone else, rather then in the past people would have turned away simply because they didn’t understand. I’m glad I got yourself for advise because at some point in my future this is a path I definitely want to take in order to understand more and my explore my theory that children born with this different way of thinking are meant to be and are a gift.. I’m not anyone professional and I am not so good at looking into facts but instead always learn from observation, I just have this niggling thing that I have to find out. The way I look at it, from previous knowledge of how humans evolved from bacteria to now, we know it was all based on a mistake in the gene so if we were the outcome of this mistake it can’t be so bad! Sorry I find it hard to articulate what I say! Maybe what I’m trying to say is its not a mistake or error as such it happens for a reason, my example would be me, I suffer ( I think) from dyslexia which is a wide spectrum again not just mispelling of words it can be many things however it means I find it really difficult to follow rules and I can only learn things my way, it means that when I write I can only go with the flow if someone tries to make me follow a pattern I screw up. I think this error in my brain makes me see things for what they are, for example I don’t look at a piece of art and look at the technique as I just cannot see but I see what I feel in a sense I see beauty without rule, a wild beauty. So I want to discover if these brain malfunctions are there for a reason and are mistakes that were supposed to happen as part of evolution.

        So I think your on the right path, and I hope you enjoy all the new things that you learn along the way and hopefully gain a new exciting perspective on life!

      • Thank you Electric B…. You are not alone in thinking as you do. There are many people, adults with Autism, researchers and parents alike, now exploring the evolution theory of Autism. I really like your concept of “beauty without rule”….. I think you may well be right.

  12. Sad that things have not changed much in all these years.

    Thanks for stopping by my Blog – the double Hiaiku “I Tried” was one of many written about my daughter (multi-diagnosed as hyper, learning disabled, borderline Schizophrenic, in and out of treatment centers, and group homes, which insurance did not pay for, etc.) She was born in 1967, and it’s been a rocky ride. She’s been in a group home environment since she was 14., medicated beyond ever having a semblance of a normal life. I must accept what I never was able to change. We talk once a month, and she is a stranger who now lives in memory.

  13. Pingback: Exploring The Personal, Professional and Social Impacts of the Increasing Rates of Autism « seventhvoice

  14. such an informative piece of writing.
    trust me i never knew about austism and might not even know if i would’ve never read your blog.
    keep up the great work of adding more to the peoples’ information! :)
    stay blessed

  15. sadly, so very true.As you say, iIt is only when a person of position/authority suffers or experiences something that they are prepared to make a difference.

  16. Hi there,
    I’m a fan of Missus Tribble. She’s a great honest blogger – so had to drop by and see you too. This article was good. I do agree with you. I have a friend whose son has Aspergers syndrome & I don’t see her any more at all. She’s entirely taken up with him, caring for him & seeing professionals & on & on what’s required. She misses out on her friendships of the old days, for love of her son understandably, but I do think there needs to be greater awareness & regard for the autistic. They’re not completely lost. I think we’re growing more aware.

    Cheers to you
    Noeleen

    • Thank you Noeleen for taking the time to read this.. Yes people are growing more aware but a lot of that awareness is being shaped in extremely specific and highly stereotyped ways.

      The real truth of the autism experience is constantly being drowned out in favor of a sugar coated version of reality that denies the daily struggles that so many go through. Greater levels of support are so desperately needed, yet still, so rarely being given.

  17. A really difficult problem – and you are right about medical professionals – they are so rushed (because of how their practices are set up), they do not truly understand what’s up, unless faced with it personally. k.

    • Thank you so much. I am truly honored. Have just posted a reply on your blog. There are a few typos in it… as always I’m trying to do too many things at once. Please feel free to edit out any repeated words and thank you once again for the Sisterhood of the World Blogging Award. You’ve made my day = )

  18. Much of the problem, as I see it, isn’t just in the handling of this situation, but also in the society’s ability to take ownership of the problem as something that it needs to address. Without that ownership, it remains the problem of the individual/parents.

    The society also has so many “critical” issues to address, such as who to blow up next, that a simple and straightforward issue such as this slips down the slope of rapidly shifting media news stories. This same mentality of government and capitalism has relegated many crucial social issues to a graveyard named “Not Now” and spun off on tangents purely of a political nature. Since none of these neglected issues have a political flavor, they aren’t likely to be served up on Congressional plates in the near future.

    This is the nature of the beast that stands growling at the door of social change for the benefit of all citizens. It is a beast which attacks its own rather than find value in the maintenance of the species. It has been this way for as long as the bottom line has existed and not likely to change in the near future from a political point of view. Lip service is about the only offering that management will allow.

  19. Pingback: little box of books

  20. What a wonderful blog. I am a follower now and I look forward to your next post. Thanks for liking my blog I appreciate your support. cheersJudy :)

  21. Thank you for your post. One of my sons has Aspergers. He is doing really well now and overcoming some of the things that used to be issues when he was younger but I still worry about when he is older. He has dyspraxia too and his handwriting, I’ve been told, is unlikely to improve much, though recently it does seem to be getting slightly better.

    • Hi Ruth, thank you so much for sharing. My son has dyspraxia as well. He’s hand writing is still at a grade 3 standard but he can now spell his name…. Yay…. And I do make him sign for his own choice of movie at the DVD store, just to get him into the habit of doing so. I’m sure the staff there think I’m mad and completely delusional about his writing skills but it’s all good practice. His dyspraxia also affects his speech severely and he has an attaxic gait…. so if you don’t know better you’d think he’d been drinking…. He’s now almost 6ft tall so lots of long limbs going in all directions…. I’m so glad to hear that your son is beginning to overcome some of his issues. I hope that you both have all the support that you need.

  22. Our nephew and his wife (in their 50s) are raising a severly autistic grandson who their young daughter was not emotionally equipped to raise. During his waking hours they cannot let the boy out of their sight for ONE minute (let alone five). Our heart breaks for all of them. As you have so well championed in today’s post, MUCH more support needs to be provided for these families.

    –John R.

  23. Very well put! The lack of services and opportunities for adults with Autism/Aspergers and those transitioning from teen to adult, is going to have a devastating effect on society. Everything from jobless rates to the homeless population, jails and mental facilities will be adversely affected by generations of men and women who have untold promise, but no way to see it to fruition. It takes intense dedication from parents, siblings and advocates to help each individual choose and work toward a positive, productive future. Here’s to our kids fulfilling their promise.:)

  24. As the father of a ten-year old boy diagnosed with autism, I couldn’t agree more. We are told by the authorities that mainstream education will cater for all his needs when it most obviously does not. So, in order to get him into a school that specialises in teaching ASD kids, we are having to fight our local council tooth and nail. The most annoying thing is, it is so obvious to us that the so called ‘experts’ we have to argue with, know absolutely nothing about autism – worse, after years in their position they still have not bothered to find out.

    • I agree with you completely Leander. If you get the time my posts on Autism and the way it is being defined in our society might also interest you. Thank you so much for responding to this post.

    • And sadly it will never change. School districts care about one thing—money–and our kids equal lots of cost to them and they will pretend to be experts, lie, deceive and do whatever it takes to give the least amount of services possible. Due process is typically the only way to eventually let them know your child WILL be educated properly.

  25. Hi, I can relate to this struggle, as I have mental illness myself! If anyone would listen, I could tell them the exact medicines and doses to treat my diseases, but no one would listen! I can’t understand why there isn’t a patients bill of rights?! This debate troubles me deeply! Thank you for the follow! Keep the fight going strong!

  26. I read your blog with compassion. I know a few people who struggle with “fitting in” with these 2 disorders. Thanks for speaking up about it all. And thank you for visiting my blog.

  27. I was involved in a class called Interpersonal Skills in my high school, where Mentors would mentor “Mentees” who had things like this. It really raised my awareness. Of the class, I was involved in an even smaller class of Drama Therapy with four boys with autism or aspergers. (We weren’t technically allowed to know what they had.) I can say that these people are no different from us. They have trouble interpreting things, but they are humans like us. They want friends like us, and girlfriends and boyfriends like us, they have dreams like us, they have weird interests like us, and all they need is help in a patient and loving environment to learn how to handle their differences. I wish classes like this were all over the United States. We had a kid, he was my friend. He never spoke a word for the majority of class. However, by the end of the year, we had become friends. He liked the same video games that I did. His parents were so grateful that the class had helped him to open up. It was really an environment like none that I had ever felt, so full of love and fun. The Mentees taught the Mentors more than we taught them. We learned so much. I wish this was everywhere.

  28. What a great post! While I don’t have so much experience with autism specifically, I am always amazed how much of a difference support and early intervention can make in mental health and how little the government puts into these things. I am a swimming teacher, and I once taught a 6 year old boy with autism. He was such a beautiful boy and it was so remarkable to see how much success he had by the hard work from his parents and support!

  29. You hit the mark with this! It’s so sad and frustrating. Then there’s the bit for us Americans who are facing a whole new definition of autism that eliminates Aspergers and raises the bar drastically for diagnosis. That’s how we’re solving our problem: redefining the diagnosis to kick kids out of line for services.

  30. I stopped attending ASD-specific therapies and social skills things with my children (Aspergers) because I could see the therapists just did not get them and instead, would lump my children in to their “one size fits all” box. They would provoke my children in to stressed/anxious behaviour and then tell me my children had problem this and problem that. They really refused to believe they were the cause of the problem and that they were only seeing my children for one hour a fortnight. We now do our own thing that cover all those kinds of therapy areas and both my children improved drastically in their challenge areas, when we did things our way.

    I’ve mostly been on the receiving end of good attitudes from people like friends and neighbours. The bad attitudes have come from the ‘systems’– educational, medical, ASD-specific.

  31. Hi, just wanted to say thank you for following my blog :) Thank you also for posting so eloquently on the subject of autism – my younger brother is severely autistic so I can identify with a lot of your posts and points. I agree that fighting for the necessary support networks can be incredibly frustrating, and it’s a fight hard-won; but the victories are all the sweeter when they do come – and they will. Best of luck :)
    Liz

  32. Hi, thanks for writing this seventhvoice. I’m already concerned over what could happen in the UK following the changes in the DSM. I’m worried on behalf of my unborn child, as Asperger’s seems to run in the family. I had a horrible time growing up without a proper diagnosis but I’ve heard people say that treatment and support post-diagnosis is similarly poor.

  33. I’m afraid I have not yet thanked you for visiting my blog site. Please accept my belated but very sincere thanks! Thank you also for giving me the chance to see your blog site. You are doing some wonderfully informative work here. I will visit more. In the meantime, the best in your blogging!

  34. Sorry I haven’t been around much lately, but my book, The Bellman Chronicles, will be FREE to download on Sept. 10 – 11! Check it out on my Amazon Kindle page.. You won’t be disappointed. And if you can slip me a review, I’d be forever grateful…

  35. Thankyou for following my blog and thankyou for this post. :) I do not know a lot about autism awareness but your post really shined a light on the issue. I was shocked when i came across an article in the Australian yesterday about a change to autism diagnosis rules, which meant thousands of those diagnosed could lose thousands of dollars in federal support and other subsidies. http://www.theaustralian.com.au/national-affairs/health/autism-diagnosis-rules-to-change/story-fn59nokw-1226463496296

    • Yes it’s an incredibly challenging time for those of us living with and trying to navigate the ever changing understandings and diagnosis of Autism. I don’t think families are as yet fully aware of all the implications that the latest round of diagnostic changes will bring. Too many are being told that these changes will bring greater support to families when instead the changes will simply end up disqualifying those who are already on the borderline. Thank you so much for comment GeorginaB and for adding your link.

  36. Pingback: Autism – the ‘Lost Generations’ | kamelkaka

  37. Pingback: Blogging Blind. How my first experience of blogging nearly made me give up on the blogosphere. | seventhvoice

  38. Pingback: Blog 2012 The Year in Review | seventhvoice

Share with me......

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s